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Chapter 5

An Examination of the Effects of Infection with HIV on Patients and their Families, including Treatment


5.1 This chapter deals specifically with the evidence given by six witnesses at the Oral Hearings on their own or their relative's infection with HIV.

5.2 The hearings of evidence on this topic took place on 7, 8, 9, 10, 14, 15, 16 and 24 June 2011. The following patients or relative witnesses[1] gave evidence to the Inquiry in respect of this topic:

  1. Christine
  2. Amy
  3. Frances
  4. David
  5. Elaine
  6. Mark

5.3 In addition, Professor Clifford Leen, a Consultant Physician at the Regional Infectious Diseases Unit at the Western General Hospital, Edinburgh and Honorary Professor in the Department of Medicine at the University of Edinburgh provided a written report to the Inquiry and gave evidence on this topic.[2] He provided a clinical view on the effects of infection with HIV on patients and their families and gave evidence on treatment for HIV.


5.4 Christine was 55 years old when she gave evidence to the Inquiry. She is married. At times she was assisted in the evidence she gave by her husband. Christine wished her occupation to remain confidential.[3] Christine's evidence was twofold: firstly in relation to their elder son's infection with HIV and Hepatitis C, and secondly in relation to her own infection with Hepatitis C, both as a result of blood products.[4] For the purposes of this chapter Christine's elder son will be referred to as 'John'. John died aged 20 in the mid-1990s as a result of his infections.

John's diagnosis with Haemophilia A and his treatment

5.5 Christine has a family history of haemophilia and as she stated, 'I have lived with it all my life'.[5] Two of her brothers were diagnosed with severe Haemophilia A and she also has a cousin and an uncle with haemophilia.[6] John was born in the mid-1970s. He was born from the breech position and was bruised from the neck down. Despite Christine disclosing her family history to the doctors, John was not diagnosed with haemophilia at that time. When he was about four months old, John developed spontaneous bruising of his right cheek. Christine informed her General Practitioner (GP) about this bruising and she believes that the GP thought that they had abused him. He referred John to the Royal Hospital for Sick Children in Glasgow (also known as Yorkhill Hospital) where he was found to have severe Haemophilia A. At the same time Christine was found to be a carrier of Haemophilia A.[7]

5.6 As a child, John was treated for his haemophilia at Yorkhill Hospital under the care of Dr Anna Pettigrew, a clinical assistant, and as an adult at the Glasgow Royal Infirmary (GRI) under the care of Professor Gordon Lowe. In 1980 the family moved to England for a few months, but returned to Scotland as they considered that the haemophilia care was better at Yorkhill Hospital than the hospital John had attended in England.[8] Initially, and until about 1980, John was treated with cryoprecipitate. Christine and her husband treated their elder son as 'a normal child' and 'we never mollycoddled him'.[9] As a toddler he had more frequent bleeds and so he needed more treatment during this part of his life. Each treatment involved John and one of his parents attending the hospital, being admitted (sometimes after a lengthy wait at the Accident and Emergency Department) and then receiving an infusion of cryoprecipitate, which took up to an hour.[10]

5.7 In 1980, when John was five years old, he received his first treatment with Factor VIII concentrate. Christine stated 'we thought it was wonderful stuff' as it could be mixed so quickly and injected there and then.[11] John was treated with both Scottish National Blood Transfusion Service (SNBTS) products and American Factor VIII. It was explained to Christine and her husband that the American Factor VIII was much better because, when being made up, it dissolved more easily and it seemed to act more effectively in preventing the bleed from getting any worse.[12] In July 1981 Christine, alongside other parents, was taught to administer Factor VIII to John so that she could give him prophylactic treatment twice a week. This helped reduce the number of bleeds that he had. If he had a breakthrough bleed, Christine gave him further injections of Factor VIII and it was only if he had a particularly bad bleed that he needed to go to the hospital.[13] When he was 14 years old, John learned to give himself Factor VIII and from then on he injected himself.[14] Both Christine and John kept a detailed record of each treatment he had, including the batch number of the Factor VIII used, and the reason for each treatment. Once completed, these records were returned to the hospital.[15]

5.8 When asked if they were warned of any risks associated with Factor VIII treatment Christine replied:

My husband did ask about risks and they said that, you know, there were risks with everything that was taken. It was just kind of brushed under the carpet when he asked about it.[16]

Christine said in her statement that they were not warned about the risk of infection with HIV or with Hepatitis C.[17] She stated:

The doctors were perceived by us to be gods. We trusted them and didn't question the treatment they were giving John. We accepted that they were giving him the best treatment available because that was what they told us.[18]

5.9 Christine said that she was never warned that there was an increased risk from prophylactic treatment (as opposed to providing treatment in response to actual bleeds). She said that had she been warned of this risk she would never have given her son prophylactic treatment.[19]

5.10 As Christine stated, what makes 'the whole tragedy' even harder to accept is that mothers and fathers may have given their own children Factor VIII infected with HIV.[20] She stated:

We thought we were doing the best thing for our children by giving them something that allowed them to live a more normal life. All the children in the training group from Yorkhill used the same batch of Factor VIII ... I think that all of the children have now died.[21]

5.11 Christina Leitch, who worked as a senior social worker at Yorkhill Hospital during the mid-1980s, spoke of the guilt some parents experienced about giving their own children treatment with infected blood products. She also described the guilt some mothers, who were carriers of haemophilia, felt at having passed haemophilia to their children. She stated:

But for many of the parents that was greatly exacerbated by the fact that they were treating their children at home, and although they had not chosen the treatment, had ... no real responsibility for what that treatment had done, I think for many of them it was an incredibly painful thing to look back and consider that, whilst they had been giving their children treatment and believing that that was for the best, in reality that's what had made them ill and which might ultimately cost them their lives. And I think that that was a terrible burden for people to have to live with.[22]

5.12 Having discovered that she was a carrier of haemophilia, Christine and her husband decided not to have any more children. They adopted a younger boy.[23]

John's diagnosis with HIV

5.13 In about 1984 or 1985, when John was about nine or ten years old, he and Christine attended one of his regular clinic appointments at Yorkhill Hospital. While they were waiting, Dr Pettigrew came and spoke to them. She apologised for the delay in them being seen by a doctor and explained that there were a lot of children there with HIV and that John was one of those children. Although John gave regular blood samples at his clinic appointments, Christine and her husband were unaware that he had been tested for HIV. Christine cannot remember who she saw after speaking to Dr Pettigrew. She remembers that she was told that the doctors did not know what effect the HIV would have, but that they would closely monitor him. She does not remember being told anything else about the virus or how John had acquired it.[24]

5.14 Christine returned home in shock and told her husband the news. As she stated, 'our world crashed down around us'.[25] They had heard that HIV was affecting people in Africa and in the gay community but that was all they knew.[26] John's diagnosis was 'devastating to the family'.[27] Christine and her husband had planned to adopt the sibling of their adopted son but as a result of John's diagnosis with HIV, they abandoned this plan. They were worried that John would feel 'pushed out' if they adopted two natural brothers.[28] They also considered that it was unfair to bring another baby into the house, not knowing what the effects of their elder son's diagnosis were likely to be. She said, 'We had to try and stabilise what we had and not add any more factors into it'.[29]

5.15 Christine and her husband were not offered any counselling or support at the time of John's diagnosis with HIV. They were encouraged by both their GP and the staff at the hospital to keep his diagnosis with HIV a secret. At the time, Christine and her husband were running their own business and they lived in a small community. Their GP was concerned that they might be ostracised. He advised them that he had sealed John's case notes so that only senior partners in the medical practice could see them. The hospital staff seemed not to know much about HIV, and seemed keen to avoid any panic and to prevent anyone being shunned. The only person Christine and her husband told was one of Christine's brothers as he too was diagnosed with HIV at about the same time as John's diagnosis with it.[30] Christine understands why the doctors thought it was right to keep John's diagnosis a secret but, as she stated:

[The secrecy] was the worst part of our lives. We always had to put on a happy front to the general public. If we could change anything we would not have had the secrecy. Why should we have stigma? We didn't do anything wrong. Other people did something wrong. But they encouraged us to keep quiet about it. The secrecy was like a powder keg.[31]

5.16 After John's diagnosis with HIV, Christine and her husband felt very isolated. They withdrew into their own family unit. They rarely went out and as a result they lost a lot of friends. When they did go out with friends, they found themselves becoming morose. She stated: 'The only person I could speak to about [John's] HIV was my husband and vice versa. The stress of only being able to speak to each other built up inside us and we took it out on each other'.[32] This caused Christine and her husband to argue with each other. Christine's husband tried to drown out the bad news by drinking too much alcohol. The stigma surrounding HIV was the most difficult aspect for them. Christine stated that they asked themselves constantly why they and John should be stigmatised when they had done nothing wrong.[33] Within a few months of John's diagnosis, Christine and her husband began to realise how serious HIV was from what they read in the newspapers and saw on the television. HIV was known then as the 'gay plague' and it was also linked to drug users in America.[34]

5.17 The Inquiry recovered some newspaper articles from around this time and examples of some of these are:

  • Two newspaper articles in February 1985 reported that both fire brigade and ambulance unions had advised their members to avoid direct mouth-to-mouth resuscitation for fear of catching AIDS.[35]
  • An article in The Sun, dated 19 February 1985, entitled 'Gays put Mrs Mopps in panic on AIDS' reported that cleaners at a theatre where gay actors were performing feared that sweeping up after a show would put them at risk of catching AIDS. The article reported that the cleaners were issued with rubber gloves and bottles of disinfectant.[36]
  • In July 1985, the Birmingham Post published an article entitled 'Killer AIDS virus has hit 10,000 in Britain'.[37]
  • On 3 September 1985 The Standard reported that the recording of a television interview with 'two AIDS victims went ahead today using volunteers after some Yorkshire TV staff refused to work in the same studio'.[38]
  • In October 1985 a letter was printed in The Sun from 'Name and address supplied'. It was headed 'So cruel' and stated 'Your report (The Sun, September 23) gives the impression haemophiliacs are spreading AIDS. This is wrong and also cruel because these people suffer enough already. People are born with haemophilia. Their blood doesn't clot and they have injections to keep them alive. Now they are taking a gamble with their lives every time they have an injection. Haemophiliacs have enough to worry about without people spreading these malicious accusations'.[39]
  • In July 1986 The Sun printed an article entitled 'Swimmers in danger from AIDS'. It reported that an expert, Professor Zuckerman, had warned that people with cuts and bruises could catch AIDS if they go swimming in badly cleaned pools.[40]

5.18 The above articles are only a very small sample of the large number of reports about HIV which appeared in the press in the mid-1980s. As Dr Patricia Wilkie stated, in the mid-1980s, 'There was never a day when the press didn't have something. And it wasn't just the tabloids, it was also the broadsheets'.[41] Christina Leitch said, 'Some of the adverts on television would have struck fear into most people's hearts. It was a time where there was almost ... hysteria'.[42]

5.19 About six months after John's diagnosis with HIV in 1984 or 1985, Christina Leitch set up a parents' support group. In her evidence she explained why she did so:

People were terrified that anyone would find out the child had HIV because of the impact that would have on the child and themselves.

So we are talking about parents who are living with an incredibly painful situation as parents and as families, but were also having to deal with this incredible fear of other people finding out, worried sick about how their children and they would be treated if they did. There were some schools that were anxious about having children with haemophilia and looking for reassurance around those things. It seemed to me that those parents were in an exceptionally difficult situation and unable to talk to anyone very much about it.

There was also a tension that had built up between the families and the hospital. Parents spoke about feeling angry. Sometimes that could be openly expressed and sometimes not, but expressed in different ways. There was a tension at times between the families and the hospital, and I think that was natural and understandable when parents felt that the hospital, the NHS, that was there to treat and care for their children had let them down, was how it was perceived.[43]

5.20 Ms Leitch stated that, as well as allowing parents to talk to other parents, the support group also allowed couples to talk to one another. She stated:

[P]arents couldn't talk about something like [HIV] when they had children about the house. There was that awful fear that they couldn't even have a conversation within their own homes at the time. So I think the importance of giving them a safe place to talk was quite important and I think the need for that gradually came to an end.[44]

5.21 Initially, Christine found the parents' group helpful, but there were only a few parents in the group and, once their children started to die, the group quickly broke up.[45]

5.22 For a few years John remained unaware that he was HIV-positive. He carried on life 'as an active boy who had haemophilia'.[46] He enjoyed sports, particularly playing football and riding his bicycle and he was a member of the Scouts. He later went on to become the youngest Scout leader in Scotland.[47] He was a sociable boy who enjoyed spending time with his friends.

5.23 Christine and her husband decided not to tell John's teachers about his diagnosis with HIV as they were worried that he would be ostracised, and might have to go to another school. Their worries were based on the difficulties Christine and her husband had, before John started school, persuading the staff that they could admit a boy with severe haemophilia. Prior to John's attendance there, his school had no experience of haemophilia and so Dr Pettigrew and one of the nurses attended to provide staff with information and reassurance about haemophilia. Christine and her husband also promised the school that, if anything happened to John, they would respond immediately. In addition, Christine usually had to accompany John on school trips. After his diagnosis with HIV, Christine was aware that the school had 'blood kits' which contained everything needed to deal with blood spills without the risk of contamination. John had also been taught from a very early age to try to keep his bleeds to himself. In 1987 there was concern about John experiencing a number of nose bleeds at school, and he was referred to a Consultant Ear Nose and Throat (ENT) Surgeon about this.[48]

John's symptoms of HIV

5.24 Until late 1985, John appears to have had no symptoms which could be ascribed to HIV. He attended the hospital regularly for monitoring of his condition. This monitoring included blood tests. In December 1985 it was noted that John had been well, apart from 'recent respiratory tract infections' and poor hearing.[49] The poor hearing was subsequently found to be caused by 'glue ear' and, in 1990, he had grommets inserted to rectify this. In 1986, John had a persistent cough from about October until December.[50] These symptoms may have been attributable to John's infection with HIV or they may have been childhood illnesses which are fairly common in children under 10 years of age. In June 1987 he was referred to a dermatologist due to a large, unsightly wart on his left middle finger which was causing him some discomfort. The dermatologist was advised that John was a 'high risk patient' and from this he surmised that John was HIV-positive.[51] The dermatologist thought that the wart was best left alone. In November 1987 John experienced recurrent tonsillitis, recurrent staphylococcal infections in his ear-lobe and dull hearing in his left ear.[52] Blood tests taken at this time showed that he had a 'healthy' T4/T8 ratio.[53] John was still experiencing recurrent tonsillitis in March 1988. At that time he also had an upper respiratory tract infection. He also continued to experience 'very troublesome' hand warts which were treated with liquid nitrogen. It was known that HIV-infected persons might be more susceptible to hand warts.[54]

5.25 In April 1989, when John was 14 years old, he was admitted to Yorkhill Hospital with a four-day history of a sore throat, facial pain with facial swelling and purulent (containing pus) nasal discharge. On admission he was found to have a high temperature. Examination and x-rays revealed that he had acute maxillary sinusitis. He was treated for this with antibiotics. Christine stated that the first time John was admitted to Yorkhill Hospital after his diagnosis with HIV he was put into a side room on his own.[55]

He was not allowed to leave the room. Everything in the room was covered in polythene so that he couldn't infect anything. The television and video and all the medical equipment were covered in polythene. The staff would come into the room wearing masks and gowns when they gave him food. They used to put his food into a disposable container before they gave it to him so that it could be thrown away when he had finished eating. One day the home tutor (hospital teacher) dropped a pencil and she refused to pick it up and a member of staff had to go and put gloves on before they picked it up. My son had to grow up like this. He was treated by the NHS as though he was a leper.[56]

5.26 Christina Leitch described a very similar episode. She stated that she was asked to visit a boy with HIV who had been admitted to hospital the night before. The patient was in a room on his own. She was told that she was expected to wear a disposable gown when she went into his room. Ms Leitch thought this unnecessary and so she refused to wear a gown. When she went into the room, the boys' parents were there. They too had been told to wear gowns. She said that the parents were very upset that their son had been admitted to hospital. She stated:

And they felt that their son was being treated as though he was the carrier of the plague. And he was sitting in bed and a nurse came in completely gowned and she had his lunch on a plate, one of the normal hospital plates, but with a paper plate on top of it, and she told him to hold out his hands and she slid the paper plate onto his hands. And I looked at the paper plate and there were - it was baked beans and mince and mashed potatoes. And I remember looking and thinking "How do you eat that from a paper plate?" And he looked and sort of laughed and said, "This is what it's been like." And while he was laughing, it was so obvious that he was deeply hurt by it. It was absolutely horrible and that incident has - it has remained very clearly in my mind for a very long time.[57]

5.27 Christine used to take meals into the hospital for John so that 'he could have his meal as a normal person rather than eating it out of this disposable dish'.[58] Christine saw other children with haemophilia being treated in the same way. Unsurprisingly, the parents complained about the way their children were being treated. The staff said that they were trying to be safe. At this time John was still unaware that he was HIV-positive. Christine does not know how he felt about this treatment, stating that John 'was a boy that just took everything in his stride'.[59]

John is told of his diagnosis

5.28 In 1989, when John was 14 years old, Christine and her husband made the important decision to tell him about his HIV status. By this time they had known that John was infected with HIV for about four or five years. During this period they had been told by someone at the hospital that John had been infected by Factor VIII. Christine cannot remember when they were told this.[60] The reason Christine and her husband decided to tell their elder son that he was HIV-positive was that they were concerned that he might become sexually active. Christine's husband discussed it with the doctors at one of John's clinic appointments and they agreed that he was at an age where, possibly, he should be told. The doctors offered to tell John but Christine's husband decided that they would tell him, as a family, at home. They were not given any advice by the hospital about how to tell him. Christine and her husband did not know any more about the virus than what they had read or seen on the television. They did not know what the long-term prognosis was for John. Christine's husband explained to John that he had contracted HIV from infected Factor VIII. John burst into tears and asked when he was going to die.[61] John had heard about HIV by this time but all he knew about it was that it was 'a gay plague'.[62] After being told his diagnosis, John was very quiet and withdrawn for a while. Christine and her husband tried to encourage him, as much as they could, to carry on as normal.[63] Christine stated that John then 'pulled himself together and did cope, and just got on with his life for a long time, which was hard for a vulnerable 14-year old'.[64] As far as Christine is aware, John never told anyone that he was HIV-positive.[65] There was no support group for the children. Christine stated that if the HIV-positive children discussed their diagnosis with each other, they kept it to themselves and never told their parents that they did so.[66]

5.29 Christine recalled that, in 1989, John took part in a clinical trial with a drug intended to fight infections of the lung. This is likely to have been a trial of Co-trimoxazole to prevent pneumocystis carinii pneumonia (PCP).[67] Christine does not know if John received the placebo or the drug during this trial.[68] In about 1990 joint clinics were started at Yorkhill Hospital which were attended by a doctor from Ruchill Hospital as well as a doctor from Yorkhill Hospital. At that time, Ruchill Hospital treated adults and children with HIV and AIDS. At a joint clinic in April 1990, John was noted to be in excellent health and asymptomatic in respect of his HIV infection. His CD4 cells remained at 'an acceptable level of 580 cells/mm3' with a CD8 count of 807 cells/mm3.[69]

5.30 The CD4 cell count test became available in the mid-1980s. This was one of the earliest tests available to assess the status of the virus. In the early days of treatment it was one of a number of factors considered by clinicians when deciding when to treat a patient. The other factors were the toxicity of the early drugs to treat HIV, resistance to the treatment, and treatment fatigue versus the benefit of treatment over a long period of time. Clinicians' knowledge and understanding of the significance of a CD4 cell count was not as good in the mid-1980s as it is now. It evolved over the years and the CD4 cell count became one of the best measures of assessing the progression of the infection.[70] Now, the British HIV Association guidelines for the treatment of HIV-1-infected adults with antiretroviral therapy 2008 recommend that treatment should be started in all patients with a CD4 count of fewer than 350 cells/uL (or cells/mm3) and in those patients with certain clinical symptoms.[71]

5.31 John's doctors considered that there was no indication for antiretroviral therapy but stated that they would continue to monitor him closely. In October 1990, John experienced an episode of discharge from his left ear. At this time, Christine told the doctors that she was concerned that John was experiencing night sweats. Although he was telling her he was not having such episodes, he was putting his sheets out very regularly for washing. John was very private about such matters and Christine did not like to press him about this.[72] She stated:

It was a difficult balance. We had a relationship that if anything really worried him, we knew he would come and talk to us but we never pushed him on it. We asked him; if he denied it that was fine, even though we had other ideas on it.[73]

5.32 When checked in September 1990 John's CD4 cell count was 380 cells/mm3. The issue of whether to start treatment with Zidovudine (also known as AZT) was discussed with Christine and John, and it was decided at that time not to commence this treatment. At the time it was difficult to know when to start therapy as there was a body of opinion that Zidovudine therapy should be started when the CD4 cell count fell below 500 cells/mm3. However, that was not the policy of Ruchill Hospital. Although staff at the hospital started therapy with Zidovudine earlier than they had done before, they were concerned about the resistant strains of the virus.[74] Christine stated that they were told that if John started Zidovudine treatment, he would have to continue with it. If he subsequently stopped the treatment the virus would become resistant to the drugs and he would be unable to use that treatment again. Christine stated that it was John's decision when to start treatment and she and her husband supported his decision. On hearing that it was not 'absolutely imperative' that he start treatment, John decided not to at that time.[75]

5.33 The development of antiretroviral therapy for HIV is discussed in Chapter 8, Knowledge of HIV/AIDS Now, paragraphs 8.35-8.40. In 1986 and 1987 there was uncertainty about the effectiveness of Zidovudine as a treatment for HIV. It caused a number of side-effects and it required to be taken every four hours. It was difficult for clinicians, like those treating John, to decide when to treat a patient who was still asymptomatic or very mildly symptomatic. Patients who were treated in the 1980s and early 1990s received very little support in adhering to their medication. Understandably, there was, and there continues to be, difficulty persuading children and teenagers, in particular, to take such medication.[76]

5.34 In the early days of treatment with Zidovudine, there was bad publicity surrounding it. A television programme showed people that it was a toxic medication and reported that clinicians were being rushed into prescribing it. As Zidovudine was not particularly effective, patients sometimes saw their friends taking it and dying and so they associated the cause of the death with the drug. This caused patients to resist being prescribed Zidovudine.[77]

John's treatment with Zidovudine

5.35 In early 1991, when John was 15 years old, he started treatment with Zidovudine. It was noted that he remained 'in general good health' but that his CD4 count had fallen to 200-300 cells/mm3 on the last two occasions it had been measured.[78] He was also prescribed nebulised Pentamidine as prophylactic treatment against PCP. The Zidovudine treatment consisted of tablets which John had to take five times a day. He had to take one of the tablets at school, but managed this without any problem. Christine and her husband encouraged John to keep taking the medication and, on the odd occasion, he needed reminding to do so.[79]

5.36 In September 1991 John was noted to be very well apart from a recent upper respiratory tract infection. He had a number of lesions and red patches on the roof of his mouth which were thought to be viral in nature. His CD4 cell count remained stable, being 217 cells/mm3.[80] Between September and December 1991, John had a sore throat. His appetite reduced and he lost about two and a half kilograms in weight. His recent CD4 count was 127 cells/mm3 and Dr Gibson, consultant haematologist, was of the view that this, together with John's weight loss, was 'a rather concerning feature'.[81] Dr Gibson was concerned that if John's HIV disease was progressing it might produce more marrow toxicity related to his Zidovudine treatment and so she reduced his dose of Dapsone[82] (which John was by this time being prescribed to prevent PCP) to minimise the combined marrow suppressive effect of these drugs.

John's treatment at the Glasgow Royal Infirmary

5.37 In December 1991, as John was almost 17 years old, he was referred to adult services and to Professor Lowe, a consultant physician, Haemophilia and Thrombosis Unit at the GRI. In her referral letter Dr Gibson noted that John was positive for the antibody to Hepatitis C.[83] Christine stated that she did not know until after John died that he had Hepatitis C. She does not think that John knew either as she is sure he would have told them if he had known. After John died, Christine asked a nurse if John had contracted Hepatitis C. The nurse replied in 'a matter of fact, off the cuff' remark, 'Oh yes, all of our boys have got it'.[84] In her referral letter Dr Gibson stated that John was 'a delightful young man' and that she would be anxious to hear how he progressed.[85]

5.38 John attended his first appointment at the GRI with his mother on 22 January 1992. There they met Professor Lowe and a doctor from the Infectious Disease Department at Ruchill Hospital. They also met the unit staff including nursing staff, physiotherapy staff and the medical social worker. John was noted to have a small boil on his right chin from shaving, wax in his ears, bilateral increase in tonsils and a few patches of redness on his palate. It was planned that he would continue to attend for monthly review.[86] In June 1992 he was noted to be experiencing sensitivity to light affecting his right eye. He was referred to an ophthalmology doctor who specialised in ocular disease in immune-compromised patients.[87] The doctor concluded that there was no evidence of ocular disease and he considered John's symptoms might be stress related.[88] Christine thought that John's eye problems were due to spending too long in front of a computer.[89]

5.39 That summer John went on holiday with his family to Spain. During this holiday he was bothered with a cough which produced green spit for about two weeks. He also suffered from diarrhoea and developed a nose bleed which caused him to cough up some blood. When he attended his clinic appointment on 21 July 1992 he was noted to have some seborrhoeic dermatitis (an inflammatory skin condition) on his face.[90] Christine took John to a Chinese Herbal doctor who concluded that his dermatitis was caused by a reaction to the ingredients of food from a burger chain which John was eating regularly at that time. The dermatitis cleared up when he stopped eating this food. With regard to his chest symptoms, John underwent a chest x-ray and tests revealed that there was a heavy growth of haemophilus influenzae (a bacterium associated with acute and chronic respiratory infections). He was prescribed antibiotics for this. In August 1992 John experienced a recurrence of sinusitis.[91] There was some improvement in his condition but he continued to be troubled by a cough. On one occasion his cough was blood-stained. On 11 September 1992 John was admitted to the GRI with lower left lobe pneumonia. He gave a history of an increasingly severe cough productive of green sputum, breathlessness principally on exertion, lethargy, malaise and occasional vomiting after paroxysms of coughing. It was thought that his infection was bacterial. He was prescribed antibiotics and was discharged from hospital when his condition improved.[92] In October 1992, John was admitted to hospital briefly and was prescribed further antibiotics as a sample once again showed haemophilus influenzae, and also candida albicans (a fungus which causes yeast infection). At this time, John also had facial folliculitis (inflammation of hair follicles causing rash, itch and pimples) and fungal infections of his thumbnails.[93] Christine described John's nails as looking as if they were rotting. John was referred to a dermatologist, who noted that, in addition to the fungal infections of his nails, John had developed a rash on both his scrotum and face. He was prescribed Terbinafine (an antifungal treatment). It was recommended that John undergo regular liver function tests while being on this medication.[94] On 12 November John was admitted to hospital with a haemophilus influenzae chest infection. Once again he was treated with antibiotics and was discharged home five days later.[95] Around this time, he underwent hyperbaric oxygen treatment which caused a great improvement in his chest symptoms.[96]

5.40 John continued to suffer from a cough and chest symptoms. He also suffered from a right middle-ear infection. In March 1993 he was prescribed Zalcitabine in addition to Zidovudine.[97] According to a letter from a consultant physician at Ruchill Hospital to Professor Lowe, Zalcitabine was 'released on a compassionate basis' for John.[98]

5.41 John was admitted to hospital on two separate occasions towards the end of March 1993. Both times he was admitted due to coughing up blood following bouts of coughing. During the first admission he was treated with high dose Factor VIII 12-hourly and, after his condition stabilised, he was discharged home the next day. The second time he was admitted to hospital, he had a high temperature. He underwent a bronchoscopy which revealed bronchiectasis (damage to the lung tissue leading to a build-up of mucus, which in turn makes the airways more prone to infection). John was prescribed intravenous antibiotics, and when his condition improved, after about four days, he was discharged home. During this admission, it became apparent that he had not been taking his anti-viral medication regularly. Prior to his discharge Christine spoke with Professor Lowe. He stressed to Christine how important it was that John keep taking his medication although he appreciated that, as he was an adult, it was harder for them to enforce this.[99]

5.42 Christine and her husband had been unaware that John had stopped taking his medication. It had been emphasised to him that he needed to take his medication regularly, and that once he had started taking it he would need to keep taking it, otherwise the HIV symptoms would return with 'a vengeance'.[100] Despite this advice, John stopped taking the antiviral medication. The medication made him feel tired and sick. Christine and her husband often asked John if he had taken his medication and he told them that he had, when they now know he had not. She believes that John did not tell them he had stopped his medication as he could see how much stress they were under and did not wish to bother them.[101]

5.43 In April 1993, John was suffering from nausea. Professor Lowe reduced his dose of Zidovudine and prescribed him Maxolon (an antiemetic medication) for this. In addition to these medications, he continued to be prescribed Zalcitabine and Co-trimoxazole. John continued to suffer from a regular cough, a rash on the right hand side of his face and neck and a fungal infection of his thumbnails.[102]

5.44 In June 1993, John left school aged 18 years. Despite all his absences from school due to hospital admissions and appointments, he successfully obtained the exam results he needed to go to college to study an HNC in computing as he had hoped to do.[103] Christine stated that at school John was 'quite switched on' and, with the help of a friend who brought work home for him, he always made the effort to catch up on schoolwork that he had missed.[104] One summer, John went to a summer camp in the USA with other boys with haemophilia from Yorkhill Hospital. They were accompanied by staff from the hospital. The trip was partly funded by the Round Table, a local charity in Glasgow, and by the MacFarlane Trust.[105]

5.45 In the summer of 1993 John went on holiday for a week to Europe with the Scouting group. He was unwell while he was there. When he attended a clinic appointment that August, he had marked facial dermatitis on the right side, looked tired and pale and had lost about 14lbs in weight. He continued to have chest problems, with a productive cough and purulent sputum. He was noted to have crepitus (crackling) and rhonchi (a coarse rattling sound) in his left lung. He had a lesion on his tongue. Dr Kennedy, the Consultant who saw John at this appointment, wrote to John's GP: 'I did not like the look of [John] today.' Dr Kennedy prescribed him a course of Erythromycin (an antibiotic used to treat bacterial infections).[106]

5.46 In about August 1993 John started the computing course at college. His health stabilised for a while and he gained some weight. He also obtained part-time work delivering meals for a restaurant three or four nights a week. He thoroughly enjoyed this work, but he found it tiring and it took its toll on him.[107] In December 1993 John went with the family on holiday to Spain. This was the last family holiday they had together. John had a cough, diarrhoea and a nose bleed while they were away but Christine stated that, despite this, he had a good time.[108] On his return he was prescribed a course of antibiotics for chest symptoms and mouth ulcers. The treatment improved both.[109]

5.47 On 24 May 1994, John was admitted to the GRI as a result of gastrointestinal haemorrhage. On admission he had a two-day history of vomiting 'coffee ground fluid' (indicative of digested blood in the stomach) associated with general weakness, lack of energy, fever and an intermittent cough. His haemoglobin was found to be low, and he was transfused with three units of packed cells and Factor VIII. He was given a course of Magnapen (a penicillin-type antibiotic used to treat bacterial infections) and oral iron. He underwent an isotope red blood cell scan which showed bleeding in the ascending colon. He also underwent a colonoscopy. He was discharged on 22 June. At discharge, his haemoglobin had increased. He suffered a cough for three days with greenish spit, and was prescribed a further course of Amoxicillin.[110]

5.48 After completing his computer course, John went to work full-time for a family-run catering business in their office. He went to work no matter how ill he felt.[111] He was keen to obtain a second job working part-time with a retail company. Christine and her husband were concerned about how tired John became working in the one job. They sat down with him and discussed the pros and cons of a second job, particularly with regard to his tiredness. John then agreed not to pursue the second job. It was apparent from Christine's evidence that she and her husband took great care to allow their elder son to lead as full and as independent a life as he wished which, in the circumstances, must have been difficult. She stated:

[W]e had to let him live his life. We didn't know how long it was going to last. We knew it would eventually - we weren't sure, we didn't know, so he had to make his own decisions. And he did appreciate our comments, when we felt we had to intervene, that we weren't nagging, that it was just constructive.[112]

5.49 John managed to work at the catering business for three months. The owners of the business knew that he had haemophilia, but did not know that he had HIV. They were very supportive of him. There were times when they telephoned Christine's husband and asked him to come to collect John as he was so unwell. At times, Christine's husband had to collect him from work and take him straight to the hospital. John's employers were very upset when they had to let him go due to his ill-health.[113] One can only imagine how disappointed John must have felt.

5.50 In the summer of 1994 John stopped taking his antiretroviral medication again, and his prophylactic Co-trimoxazole. Christine stated that, once again, he became 'fed up with having to take tablets all the time and how ill they were making him feel'[114] and 'the side effects were quite straining on him'.[115] He was trying to work, trying to just be normal and he felt the side-effects were just bringing him down. She stated:

He was fed up. I do not think that he thought it through properly when he came off the medication. We could not keep track because when he became an adult patient we lost control of managing his care. The hospital would not tell us anything. We could not search his room and count the tablets. He had made up his mind. He was very fit and went to the gym. Maybe he thought he would survive without medication. Perhaps he thought he was indestructible.[116]

5.51 John's condition continued to deteriorate. He suffered from repeated chest infections.[117] In about October or November 1994 he was admitted to Ruchill Hospital with PCP. This was successfully treated. In November John was still slightly wheezy, had a rash on his back, oral candidiasis (thrush) and a fungal skin eruption over his shoulder.

5.52 In January 1995 John was admitted to Ruchill Hospital due to vomiting and a joint bleed. He underwent a gastroscopy and was found to have developed two ulcers.[118] His lungs were badly damaged. John was told that the ulcers could be treated. A few hours after the gastroscopy, he became paralysed and he could only move his head. The doctors did not know what had caused this. By this time he had lost a lot of weight and was unable to do anything for himself. He felt degraded. The doctors told Christine and her husband that John did not have long to live and so, on 13 February, they took him home.[119]

5.53 At home, Christine and her husband made up a bedroom for John downstairs. Initially they tried to care for him themselves, but it became impossible for them to do so. He needed assistance with everything. Ruchill Hospital organised nurses to care for John overnight so that Christine and her husband were able to sleep. The only thing John asked them to do was to take him to the toilet during the night. He used a commode, and it took two people to lift him onto it so as not to hurt him.[120]

5.54 John started having nose bleeds. Christine telephoned the GRI for help, and three days later someone came to the house to see him. This person cauterised the bleed, but by this stage John had blood in his lungs. He developed a further lung infection. He needed oxygen, and this was provided for him at their home. On 7 March 1995 John died while holding his parents' hands. Before dying he said, 'Dad, just leave me, I'm ok' and he told his parents that he loved them.[121]

5.55 About two days after John's death, the possibility of a post mortem being carried out was raised with Christine and her husband. Initially they were not keen on this, but after discussions with the hospital social worker, they agreed to it in the hope that the findings might assist other patients with HIV. There was another child with similar symptoms to John and they hoped to help this child. Six months later Christine and her husband went to Ruchill Hospital for the post mortem results. They were told that the post mortem report had been mislaid. They returned at least two further times to obtain the result, but each time they were again told it was mislaid. After Christine gave evidence the Inquiry investigated this matter further. In September 2011 the Inquiry obtained a copy of the post mortem result for John, and it was then forwarded on to Christine. The post mortem concluded that John died as a result of pneumococcal pneumonia and bronchiectasis.[122]

5.56 John's funeral was attended by family, friends and representatives of the Scout Association. Nobody at the funeral knew that he had died of AIDS. They understood that he had died of pneumonia. In 1996 both Christine and her husband were tested for HIV, and were found to be negative. A few times Christine had received a needle stick injury whilst giving John his medication.

5.57 Christine and her husband were offered counselling by the MacFarlane Trust but she stated, 'it is not easy to talk to a stranger in a hotel'.[123] Their GP told them that they were the best counsellors for each other, but Christine feels that that advice perpetuated the secrecy. With the benefit of hindsight Christine feels that they were wrong not to accept counselling; especially in respect of their younger son. She stated that they had 'guilt trips' about how they had handled things.[124] She stated, 'Even now I burst into tears, when I think about the past, which may not have happened if we'd had someone to talk to at the time for advice'.[125] Christine and her husband subsequently attended five bereavement weekends organised by the MacFarlane Trust. Christine described these as weekends 'without any secrecy'.[126] She found it very helpful to meet others in the same situation, and to speak openly.

5.58 At the time of John's death, his brother was 14 years old. He was unaware that his older brother had HIV, and when John died, he was told that he had died of pneumonia. Christine and her husband told their younger son when he was in his 20s that his older brother had died as a result of HIV. With hindsight, Christine believes that they should have told him the truth sooner. Their younger son has been deeply affected by his brother's death and has been troubled ever since. He suffered from acute depression during his teenage years. He continues to grieve for his brother. He is now an alcoholic.[127]

5.59 In 1997 when Christine's younger son joined the Army, Christine and her husband were unable to envisage their future in a house without children and so they became foster parents. Since then they have fostered three children long term for about six or seven years, and cared for other children in between at weekends and overnight.[128]

5.60 About a week before John died, Christine and her husband discovered that a girlfriend of John was pregnant. Christine's husband had spoken to John about this and he told his father that he had had a sexual relationship with her, but that he had practised safe sex. This girlfriend came to John's funeral. She later had a son. Christine and her husband built up a relationship with her. She had an HIV test which was negative. Eventually Christine and her husband started to see their grandson and he started to visit them regularly. He is now a teenager. He has his own room in their home and comes on holiday with them. He has the same mannerisms as John. Christine stated, 'He is a great wee lad and it makes my day when I see him'.[129] She believes that he and their foster children have helped them cope with their immense grief at the loss of John.

Financial impacts of John's infection with HIV

5.61 In the early 1990s Christine 'tried to top up my life insurance policy'. Her GP refused to sign the application form to enable her to do this. She believes that the GP was concerned that she too had acquired HIV. Eventually the matter was cleared up but it was 'a very long, drawn-out affair'.[130]

5.62 John received two payments from the MacFarlane Trust. He received the first payment of £20,000 in 1990 when he was 15 years old and the second payment of £20,000 in 1991. In order to receive the money, John had to sign a waiver saying that he would not take any further action against the UK Government in respect of contracting HIV. He had to sign this form at a solicitor's office and neither Christine nor her husband was allowed to be present when he signed the waiver. The money was to be used to buy him a car. The rest of the money was put aside for John and was used to buy something that he wanted or needed. John wanted his parents to use the money. John also received monthly payments from the MacFarlane Trust while he was alive. Christine cannot remember how much they were. Christine's grandson now receives £250 a month from the MacFarlane Trust and will continue to do so while he is in full-time education.[131]


5.63 Amy was 49 years old when she gave evidence to the Inquiry. Amy is separated and has two sons. She gave evidence about her elder son's infection with HIV from a blood transfusion. For the purposes of this chapter Amy's elder son will be referred to as 'Luke'.

Luke's blood transfusion

5.64 Luke was born in Ninewells Hospital, Dundee in the mid-1980s. He was born at 42 weeks' gestation by emergency caesarean section due to foetal distress. At section, the fluid was blood stained which was suggestive of possible placental abruption (condition in which the placenta partially or completely separates from the lining of the uterus). At birth, Luke was seriously ill. He was 'rather flat with an Apgar score of 1 at one minute'.[132] He was ventilated and admitted to the Special Baby Unit. In the Unit he was noted to have signs suggestive of cerebral irritation and convulsions. An ultrasound of the skull suggested cerebral oedema (excessive accumulation of fluid in the brain). He was managed with ventilation, fluid restriction and medication. He was given a loading dose of Phenobarbitone, an anticonvulsant medication. Due to low blood pressure, he received a transfusion of plasma protein solution. He was also given fresh frozen plasma. He developed a bacterial infection and then renal failure. During this time, Amy and her husband were aware how seriously ill Luke was. They were told that he was living only on a 'day-to-day' basis.[133] His condition improved with treatment and, 16 days after he was born, he was discharged home on medication. He was provided with a heart monitor for use when he slept or was in the pram at home.[134]

5.65 Luke continued to recover at home. At a review appointment in November 1985, he was noted to be making excellent progress and Amy had no concerns about him. He was smiling, laughing, gurgling normally and was alert and lively.[135]

Luke's diagnosis with HIV

5.66 Some months after Luke's birth, his GP arrived unexpectedly at their home. Amy was there with her mother and Luke. The GP explained to Amy that Luke had been infected with HIV from the blood he had received at birth.[136] Amy was numb with shock and she could not believe what she was hearing.[137] She found the news 'really devastating'.[138] At that time the fact that Rock Hudson had AIDS was a big news story and that was what Amy knew about HIV. Her GP did give her some information about HIV but Amy cannot now remember what he told her. She remembers that he told her that Luke should attend hospital appointments. The GP then left the house, and Amy had to tell her husband when he came home from work. The news was particularly devastating for them given all they had been through since Luke's birth. She stated that, having watched their son improve after his difficult birth, they reverted to being concerned for his future. They were aware that medications for HIV were not good at that time.[139]

5.67 Luke's GP referred him to a Consultant Paediatrician at Ninewells Hospital. In his letter of referral he wrote that Amy and her husband were 'naturally ... upset and anxious about the future'.[140] At Luke's first appointment with the Consultant Paediatrician on 1 April 1986 he was tested for HIV and found to be positive.[141] Amy and her husband were told the result of this test at the next hospital appointment in May. The doctor had the impression that they had accepted Luke's diagnosis 'extremely well' and had 'a realistic understanding of the problems'.[142] Amy remembers that, around this time, they were advised to be careful to avoid secondary infection. They were told to use gloves and bleach.[143]

Luke's early childhood

5.68 From May 1986 onwards Luke attended regular appointments at the hospital. These were between three to six months apart depending on his state of health.[144] At each appointment, Luke underwent blood tests and his glands and general welfare were checked. Amy usually took him to these appointments by bus. She had to take time off work to do so.[145]

5.69 When Luke was between two and three years of age he was diagnosed with a hearing impairment affecting both ears. Before this, he had become increasingly frustrated and had difficulty with his speech. When he was about three years old, Luke had grommets inserted. He was put to the end of the operation list due to being HIV-positive. When he was five years old he was given hearing aids. Amy was told that these hearing problems were a result of the difficulties he experienced immediately after his birth.[146]

5.70 Amy remembers that, in the early days after Luke's diagnosis with HIV, when they attended hospital they were sometimes put in a room on their own. This made her feel isolated. On one occasion, a doctor blamed Amy for having given HIV to her elder son as he had assumed that Luke had acquired the virus from Amy's breast milk.[147]

5.71 When Luke was three years old, he frequently woke up during the night and often at that time was found to be sweating excessively. Amy stated that when her elder son sweated 'his blankets and everything would be absolutely soaking'.[148] He had swollen lymph nodes on his neck and in his armpits and was thrombocytopenic (abnormally low number of platelets). As a result of this he bruised easily. At a clinic appointment in July 1988 the possibility of Luke being treated with Zidovudine, were his condition to deteriorate, was discussed with Amy.[149] She was told that Zidovudine had already been introduced as treatment for a few children, and was well tolerated by them. Amy was aware that Zidovudine was a new treatment for HIV and so the side-effects of it were unknown. She thought that the doctors would effectively be testing the treatment on Luke. Notwithstanding this, she was keen to try whatever might help him.[150]

5.72 In July 1989 Luke's care was transferred to Dr Tarnow-Mordi, a Consultant Paediatrician. At that time he continued to suffer from thrombocytopenia, swollen glands in his neck and armpit and enlarged lymph nodes in the groin area. In about August 1989 Luke started nursery. Amy was advised by the hospital that there was no need to inform the nursery of his HIV status, since any bleeding accident should be treated uniformly for all children.[151]

Luke's treatment with Zidovudine and immunoglobulin

5.73 Towards the end of 1989, when Luke was four years old, he started treatment with Zidovudine. Luke had been keeping well. Amy stated that he started treatment to sustain a better chance of living, and to improve his immune system. After starting treatment his night sweats improved slightly, and occurred only once or twice a week. He was noted to have new enlarged submandibular glands (salivary glands situated beneath the floor of the mouth).[152]

5.74 Luke did not like the taste of Zidovudine and he started refusing to take it. Three months after he had started the treatment, he had lost weight. His appetite was poor and he continued to have night sweats. His submandibular lymphadenopathy (swollen lymph nodes beneath floor of the mouth) was a little more marked.[153] With the encouragement of a star chart, Luke was persuaded to keep taking his medication and a month later he had regained some weight, and his lymph nodes remained unchanged.[154]

5.75 About this time, Dr Tarnow-Mordi put Amy in touch with another family with a similarly affected child as he thought that it would be helpful for them to speak to someone in a similar situation. Amy spoke to the mother in this family. Due to the stigma attached to the virus, Amy and her husband only told their siblings and their parents of Luke's diagnosis with HIV. They did not tell any of their friends or their aunts and uncles. They did not wish their elder son to be isolated. To this day only their immediate family know that he is HIV-positive. Amy felt that the only people she could speak to about Luke's condition were her mother and her sisters. If she spoke to them about it, she felt she placed a burden on them as they were unable to speak to anyone about it. Amy found this 'hard'.[155]

5.76 When Luke was four years old he sustained a laceration to his forehead, and it bled profusely. Amy took him to the Accident and Emergency Department of Ninewells Hospital. The nurse treating him did not wear gloves so Amy had to divulge that he was HIV-positive, so that the staff would protect themselves. She found this experience distressing. Had the nurse taken the appropriate precautions, she would have been spared having to explain Luke's HIV status.[156]

5.77 In early 1991, when Luke was five years old, he started taking nightly Co-trimoxazole as prophylaxis against PCP.[157]

5.78 Amy struggled to cope with the implications of Luke's diagnosis with HIV. She stated that she tried to put his diagnosis behind her, but every hospital visit, which she attended alone with him, was a constant reminder of his condition. She said, '[T]here would be times I would be going up there on my own and I would have [Luke] in my arms ... and I would just be crying on the bus coming home'.[158] 'I was hurting inside, unhappy, bitter and angry at all that has happened'.[159] Amy was referred for counselling in 1987 but, at that time, she was not ready for 'anything like that'.[160] So, in the early days of Luke's diagnosis with HIV, the only support she received was when she spoke to the doctor at his hospital appointments. When Luke was about five years old, Amy became unhappy in her marriage. She did not see the point in carrying on and tried taking her own life 'as I had just had enough .... Looking back I know it was the wrong thing to do but then it was like I had just given up'.[161]

5.79 In July 1991, Luke was prescribed immunoglobulin. The immunoglobulin was administered to him at the hospital by a drip and each treatment would take about two hours.[162] Initially Luke was prescribed this once a month but in 1996, as he had remained so healthy with a steady CD4 count, it was reduced to once every three months.[163] The doctors advised Amy that they wanted Luke to have this treatment as prophylaxis against bacterial infections. Intravenous immunoglobulin was widely used to treat idiopathic thrombocytopenia purpura (an autoimmune disorder causing a reduction in platelets) in the general population, as well as in those who are HIV-infected. In children there were some positive experiences with using immunoglobulin treatment. Current practice does not include the use of intravenous immunoglobulin in HIV infection, except for severe parvovirus infection (a common infection also known as 'slapped cheek disease') and, rarely, intractable thrombocytopenia.[164] Luke continued to receive infusions of immunoglobulin until 1997.[165]

Luke at school

5.80 When Luke was five years old he started school. Only the headteacher at the school knew about his infection with HIV. The school had policies and procedures in place which meant that all blood spillages were dealt with in the same way. Luke's headteacher was told about his infection for two reasons: first, to explain why he was often absent from school to attend hospital appointments and, secondly, so that she could warn the family if there was an outbreak of chickenpox in the school. Chickenpox can be severe in patients with HIV so any time there was an outbreak of chickenpox at the school, Amy had to take Luke immediately to the hospital. There he was treated with Zoster Immunoglobulin injections, which he received in the top of his legs, and he was prescribed a five-day course of oral Acyclovir (a drug used to treat infections caused by viruses, including chickenpox).[166]

5.81 Luke enjoyed school and 'sailed through' despite his hearing difficulties.[167] When he was seven and a half years old, a specialist nurse joined the local HIV multidisciplinary service as part of a community nursing team. Her remit was to provide information, care and support for HIV-positive patients and their families. She used to arrange Luke's monthly appointments for his treatment with immunoglobulin. She also saw both of them at his hospital appointments and was always contactable, even outwith normal working hours. She has been, and remains, a good support to both Amy and Luke.[168]

5.82 During his childhood, Luke suffered from polyps in his nose. Amy described the effects of this as 'it was always like he was choked up'.[169] He was referred to an Otolaryngologist when he was young for adenoidectomy but, due to his low platelet count, the Otolaryngologist was unwilling to operate. When Luke was older he underwent surgery to cauterise the polyps.[170]

5.83 In about 1996 Amy and her husband separated. Amy stated that she and her husband 'drifted apart'.[171] She believes that Luke contracting HIV was a major factor in their separation. Since their separation, Amy and her husband have maintained a good relationship for the sake of their children and the children remain close to their father and his family.

Luke's treatment with antiretroviral medication

5.84 In October 1997, Luke's immunoglobulin treatment was stopped and he was prescribed dual antiretroviral therapy of Zidovudine and Lamivudine. Lamivudine was similar to Zidovudine, in that it was another NRTI.[172] It was introduced as treatment for HIV in about 1995.[173] Luke continued to suffer from enlarged lymph nodes under his arms and in his groin but was otherwise well.[174]

5.85 In September 1998, when Luke was 13 years old, Dr Tarnow-Mordi and Luke's parents decided that he should be told that he was HIV-positive. They agreed that it would be better if Dr Tarnow-Mordi explained this to him at the family home.[175] In October 1998, Dr Tarnow-Mordi and the specialist nurse visited Amy, her husband and their sons at home. In his letter to Luke's GP about this visit, Dr Tarnow-Mordi wrote:

I saw [Luke] recently at home .... We went over the reasons for [Luke's] regular attendances at the hospital and his frequent medicines and in particular I explained the HIV virus which is inside his white cells and that the drugs he is taking is helping to control this virus and prevent it from damaging his white cells further. We emphasised the need for secrecy about his diagnosis outside the family because people have been and still are sometimes very cruel about this condition because of their own fear of catching it. [Luke] seemed to understand what was said and to accept it very well and his parents seemed satisfied that he had made a good start in understanding his diagnosis. They feel prepared to build on this beginning and answering any question he may have in the future with further assistance from ourselves and yourself whenever appropriate.[176]

5.86 Amy and the doctors felt the need to emphasise keeping Luke's diagnosis a secret due to the stigma about HIV. Amy has always told Luke that, if the fact he has the virus should become known to others, he should never feel guilty as it was not his fault that he became HIV-positive.[177] It was apparent, as Amy gave her evidence on this matter, that the stigma surrounding the virus and the need to protect her elder son from this has affected her greatly.

Luke's treatment with triple therapy

5.87 In November 1998, Luke's viral load showed an increasing level. Dr Tarnow-Mordi decided that it was appropriate to change his treatment from dual therapy to triple therapy, namely Stavudine, Didanosine and Nelfinavir.[178] It was arranged that he start this treatment in the near future. Stavudine and Didanosine are NRTIs. Nelfinavir is a protease inhibitor. Protease inhibitors became available to treat HIV in about 1995, and more generally in 1996, and were usually added to whatever treatment a patient was receiving. The era of Highly Active Antiretroviral Therapy (HAART), involving treatment with up to three drugs, arrived in the second half of the 1990s.[179] Around this time, a new laboratory technique was able to measure the viral load of an HIV patient, and this confirmed the extent of the replication of the viral particles of HIV.[180] The arrival of protease inhibitors heralded a marked improvement in the treatment of HIV. Professor Leen stated that, at the time, some patients were so ill that clinicians thought they would not survive. Some got married in the hospital as they thought they were going to die. They now have children and grandchildren. Professor Leen described it as 'an amazing time' which changed the face of HIV and AIDS completely.[181]

5.88 In December 1998 Luke contracted a chickenpox-type rash. He was admitted to the hospital for a week's treatment with Acyclovir, and was then discharged home where he took oral Famciclovir (another medication used to treat viral infections, such as chickenpox) for a further seven days. During his admission Luke remained well and his rash resolved uneventfully. While he was an in-patient, Dr Tarnow-Mordi took the opportunity to change Luke's antiretroviral therapy to the new triple regime of Stavudine, Didanosine and Nelfinavir and to increase his dose of Co-trimoxazole. Initially, Luke vomited the Nelfinavir due to its unpleasant taste, but he started taking it with milk which helped. Having told Luke about his HIV status the previous week, Dr Tarnow-Mordi found it helpful to explain to him why he was changing his medication in terms of his underlying virus condition. In his letter to Luke's GP about this admission Dr Tarnow-Mordi wrote 'I don't think he understands the full implications, but he does know that he has HIV and that we are giving him life long drug medicines to keep the virus under control'.[182]

5.89 Three weeks after starting the triple therapy, Luke's viral load showed a significant reduction, and his CD4 count had increased.[183] In September 2000, his dose of Co-trimoxazole was stopped as there was concern that this was the cause of his low neutrophil count.[184] Luke kept well and continued to attend three-monthly review appointments.[185]

5.90 Luke left school after fifth year and went to college to complete a one-year computer studies course.[186]

5.91 In January 2002, Luke attended his first appointment with a new Consultant at the Adults' Infectious Disease Clinic. He was always accompanied to these appointments by one of his parents.[187] Having had such a good relationship with Dr Tarnow-Mordi, Luke's relationship with this new Consultant was not good. Neither he nor Amy liked this new Doctor. They did not like 'his bedside manner'.[188] At this appointment Luke's blood test results were noted to be very encouraging, with a CD4 count of 682 and an undetectable viral load.[189]

Luke's non-adherence to his treatment and the subsequent deterioration in his condition

5.92 Amy stated that it was always 'a struggle' to encourage Luke to keep taking his medication.[190] She and her husband used to try to encourage and advise him to take his medication but, when he became a teenager, Amy felt that it was his choice and she could only advise him.[191] In the mid-1990s clinicians received frequent complaints from patients about the number of tablets they had to swallow and the large size of them. Nelfinavir was particularly difficult to take.[192] Some tablets could be crushed but this depended on the bioviability of each type. Others could be dissolved in a liquid, but this would involve extra time and effort, and might not mask the bad taste.

5.93 In November 2004 Luke stopped taking his antiviral medication. He found the tablets difficult to swallow, did not like the taste of them, and, at one point, told his mother that he did not see the point in taking them.[193] Luke started to miss clinic appointments. He often made up excuses to not attend.[194] In November 2005 Luke attended a clinic appointment accompanied by his father. His CD4 cell count in September 2005 was 323 cells/mm3 compared to 724 cells/mm3 measured in August 2004. His viral load in September 2005 was 15,000 copies per ml. 'Viral load' in this context, is a test that measures the amount of HIV virus in the bloodstream. The result is measured in copies (of the virus) per millilitre of blood and it can range from over 1,000,000 copies/ml to fewer than 50 copies/ml. The latter measurement is classed as undetectable. Luke did not appear to be suffering from any symptoms at that time. He was told that his immune system could deteriorate again to a level requiring antiviral treatment.[195]

5.94 In June 2006 Amy's younger son developed chickenpox. Luke felt well but in hospital received a seven-day course of Varicella Zoster Immunoglobulin and Valacyclovir (an antiviral drug used to treat infections caused by two common viruses).[196]

5.95 At a clinic appointment in December 2006, Luke told his Consultant that he was considering restarting his antiviral medication as he had suffered a few infections. At that time he had a mild seborrhoeic dermatitis on his face.[197] In January 2007, Luke's viral load was only 4100 copies/ml, indicating only fairly low replication of the virus. Luke was still keen to restart treatment and so was prescribed Truvada, one tablet daily, and Efavirenz, one tablet daily. Truvada contains a combination of tenofovir and emtricitabine, and both are NRTIs. Efavirenz is an NNRTI.[198] The principal side-effects of these medications were disturbance of renal function, and vivid dreams or even nightmares.[199] Luke had difficulty swallowing these tablets due to their size so he did not take them. In April 2007, the Consultant wrote to Luke advising him that the Truvada tablets could be dissolved in water, but the solution they made had a slightly bitter taste. The Consultant also wrote that he was trying to obtain Efavirenz as a liquid solution.[200] It seems that this did not help Luke, and he did not take these medicines.

5.96 Between April and June 2007, Luke was prescribed Kaletra (a drug used to treat HIV containing two different protease inhibitors, lopinavir and ritonavir). When Luke attended a clinic appointment with the Consultant on 19 June, Luke told him that he had not taken any of his antiretroviral medication because he could not eat meals on a regular basis and Kaletra was required to be taken on a full stomach.[201] In his letter to Luke's GP about this appointment, the Consultant wrote:

Overall, I was left with the distinct impression that he is seeking excuses for not being on treatment. This is obviously a pointer to non-adherence to prescribed therapy. In such a setting, he can only breed resistance to the drugs and this would leave him in a worse position than no therapy at all.[202]

The Consultant advised Luke to reorganise his meal times.

5.97 Luke attended for review by the Consultant on 6 November 2007. By this time his CD4 count had dropped to 87 and he remained underweight at 53 kilogrammes. The Consultant wrote, 'things are not going terribly well'.[203] He had a frank discussion with Luke. He wrote:

I have never been fully convinced that [Luke] fully understands the stark choices he faces at present. I pointed out that, in the absence of treatment, HIV could kill him in the relatively near future. However, specific treatments for HIV could prolong his life very significantly and improve his overall wellbeing. I have left him to go away and think about this.[204]

5.98 The Consultant asked Luke's GP to prescribe Co-trimoxazole on a regular basis as a prophylaxis against opportunistic infections. He arranged to review Luke in January 2008 to consider a once daily single pill therapy for HIV.

5.99 On 23 November 2007, Luke was admitted to Ninewells Hospital with breathing difficulties. He was placed in an oxygenated room and was treated with IV medication. His treatment with Co-trimoxazole was stopped on admission due to him having an adverse reaction to it. Luke was discharged home on 29 November. He was prescribed Dapsone as a prophylaxis against PCP.[205]

5.100 By January 2008, Luke had gained about 2kgs in weight. Luke reported that he was able to swallow tablets and so the Consultant prescribed him Truvada, one tablet daily and Kaletra, two tablets daily.[206] At the next clinic appointment that February, Luke told the Consultant that he had been unable to swallow any of his antiretroviral medicines. He took a couple of the tablets to the appointment to show the Consultant how big they were. He agreed that they were 'a significant size' but commented that most of his other patients were able to swallow them without difficulty.[207] The Consultant suspected that Luke simply did not wish to take the tablets, and so was coming up with a variety of excuses as to why he was unable to persevere with them. The Consultant agreed to speak to the pharmacist to find out whether the pills could be crushed.

5.101 After a clinic appointment in May 2008, the Consultant wrote that no further progress had been made. He believed that Luke had come up with a variety of excuses as to why he could not start taking the antiretroviral medication. He considered that they were all part of 'an avoidance strategy' but the underlying problem was that Luke did not wish to take the pills. Obviously, this was the Consultant's understanding of the position. Amy stated that Luke did not discuss these matters with her, and so she was unable to shed light on his thinking about this matter. The poor relationship between this Consultant and Luke will not have assisted, and the Consultant wrote:

I managed to get him to admit that in the absence of treatment he will almost certainly die fairly soon. I explained to him that taking the treatments in a half hearted manner would rapidly breed resistance to the drugs which would never work again. I told him that there was no point in us seeing him again until he is prepared to take the treatments as prescribed. I have left him with an open appointment at the clinic.[208]

5.102 After this appointment the Consultant wrote to the HIV clinical nurse specialist stating that Luke was continuing to make excuses as to why he could not take his treatment. He stated, 'I think we will all have to take a step back now and let him think it over himself without any prompting or encouragement from ourselves. I suspect we may have had too much intervention and support in the past'.[209] He advised her to wait for Luke to make an approach to them for a clinic appointment.

5.103 On 7 October 2008, Luke attended an appointment with the Consultant. Luke advised him that he wanted to recommence antiretroviral therapy, and that his mother would help supervise the first couple of weeks of treatment. When the Consultant asked Luke why he wished to restart therapy, Luke apparently stated that he had felt 'a bit poorly' a couple of weeks before.[210] The Consultant undertook to find out if Luke could crush the Truvada tablets before taking them.

5.104 In November that year, Amy asked the Consultant if Luke could be prescribed some antidepressant medication as he was feeling low. The Consultant referred Luke to a psychiatrist for assessment for a possible depressive illness.[211] In his letter he wrote of Amy's 'great frustration and anger about the transfusion in 1985 and the subsequent stress amongst the entire family'.[212] He wondered about the cause of Luke's reluctance to take treatment. As a result of the referral letter, the local Community Mental Health Services wrote to Luke twice asking him to contact the service to make an appointment. Luke failed to do so and so he had no contact with these services.[213]

5.105 Due to his failure to take his antiretroviral treatment, Luke's condition deteriorated. On 17 January 2009, he was admitted to Ninewells Hospital with a four-week history of shortness of breath. He had a cough productive of green sputum, and he became breathless on limited effort. A chest x-ray showed lingula shadowing (shadowing of a segment of the left lung). Luke admitted that he was having occasional night-time sweats. He had left-thigh paresthesia (tingling sensations). On examination he was found to be extensively cyanosed (having a bluish colouring due to lack of oxygen) in his nail beds with cold hands. A few crackling sounds were heard in the base of his right lung. An initial diagnosis of PCP pneumonia or atypical pneumonia was made and Luke was started on treatment with Co-trimoxazole at 60% oxygen and IV steroids. Luke was subsequently found not to have PCP and no cause of his chest infection was found. His treatment with Co-trimoxazole was continued and his IV steroids were changed to an oral steroid, Prednisolone. Luke was discharged home on 23 January to continue taking both these medications.[214]

5.106 During this admission, Luke sent a letter to one of the doctors treating his respiratory problems. It read:

I'm writing to you as regards myself being under [the Consultant]. I feel communication has broken down between us. I feel it hard to open up and express my feelings. I'm starting to have negative thoughts about the outcome of my visit before I've even seen [the Consultant]. I feel a change could do me good.[215]

5.107 As a result of this letter, Professor Nathwani, a Consultant Physician, started treating Luke in respect of his HIV in place of the previous consultant.[216]

5.108 In early February 2009, Luke was admitted to hospital again due to a flu-like illness.[217] His symptoms were arthralgia (severe pain in a joint or joints), fevers and feeling 'non-specifically unwell'. During this admission, Luke's liver function tests were noted to be abnormal, but they recovered. He underwent extensive investigations including tests for Cytomegalovirus, Epstein-Barr virus (both part of the herpes family of viruses), adenovirus (a cause of respiratory illness) and a respiratory tract infection, all of which proved inconclusive. Luke was diagnosed as having a viral infection which resolved without treatment.

Luke resumes taking antiretroviral medication

5.109 On 11 February, Luke attended a clinic appointment. He was noted to be feeling well and had almost finished his course of Co-trimoxazole. He continued to take Prednisolone. It was planned for him to attend a further clinic two or three weeks later with a view to possibly starting antiretroviral treatment.[218] On 19 March, Luke attended a clinic appointment with Professor Nathwani. At this time Luke had completed his therapeutic course of Co-trimoxazole, but he continued to take one tablet of it daily as prophylaxis against PCP. Luke also started reducing his course of oral Prednisolone with a view to stopping it. Professor Nathwani prescribed Truvada and Nevirapine. Nevirapine is an NNRTI. Luke was prescribed these particular drugs as they were the only antiretrovirals Professor Nathwani could find which could be taken in a liquid preparation.[219]

5.110 Luke managed to take this medication and has continued to do so. There was a marked improvement in his condition soon after starting the treatment. At a clinic appointment in April, the doctor 'was amazed at how well he [was] looking'.[220] He had gained 9kgs in weight and told her that he was 'feeling really well'.[221] He was noted to be eating well, and Amy's husband reported that he was much more talkative and outgoing. He had finished his course of steroids but continued to take Co-trimoxazole prophylaxis as his CD4 count remained below 200.

5.111 In July 2009, Luke was suffering from a widespread rash which worsened particularly over his upper anterior chest, back and shins. It was thought to be seborrhoeic dermatitis. Luke was prescribed Itraconazole liquid preparation, Nizoral shampoo and Canesten HC (all antifungal medications).[222] His CD4 count remained low.[223]

5.112 At a clinic appointment on 8 July 2010, Professor Nathwani thought that Luke was looking the best he had seen him look for a considerable length of time. Once again, Luke had gained weight and was generally feeling very well. He was tolerant of his medication, his last viral load was completely suppressed and his CD4 count was stable at 141. Professor Nathwani noted that there was a family history of cardiovascular disease. HIV treatment, particularly treatment with protease inhibitors, is associated with an increased risk of cardiovascular disease. This risk is increased by about 70% compared to patients in the same age and lifestyle group not receiving treatment.[224] Professor Nathwani asked Luke to pay particular attention to his diet and planned to monitor him from a cardiovascular point of view particularly because of his young age.[225] Professor Nathwani informed Luke that his care was being transferred to a new Consultant in Infectious Diseases.

5.113 His viral load increased to 160 in September 2010, and his CD4 count was 204 at that time. In November, once again, Luke's rash worsened over his neck, his wrists and his abdomen. It also affected his eyes. The doctor was concerned that this rash was more than seborrhoeic dermatitis. One possibility was that the rash was caused by one of his medications each of which was known to sometimes cause this side-effect. The difficulty was in establishing which medication might be causing it. Luke was prescribed Daktacort cream (a hydrocortisone cream) and was told to continue using the Nizoral shampoo. As his CD4 count had been greater than 200 on two occasions, the doctor thought that it would be safe for Luke to stop taking Co-trimoxazole in the hope that this would improve his rash. He was referred to the dermatologists at the hospital for further advice.[226]

5.114 When Luke was reviewed in the clinic on 15 December, his skin seemed 'to be a lot improved'.[227] The doctor hoped that this was due to the withdrawal of Co-trimoxazole and diagnosed Luke as being allergic to this drug. In March 2011, Luke's rash looked 'much improved' but flared up when he stopped using the Daktacort cream.[228] Luke's HIV viral load was noted to have fallen below 20 units in December 2010 and his CD4 count had reduced to 195. The new Consultant, Dr Evans, was a little disappointed that the CD4 count was so low. He suspected that the seborrhoeic dermatitis would not completely resolve unless Luke's immune system improved over the next couple of years.

The present position

5.115 Luke continues to attend clinic appointments every four months. When asked how her elder son is now, Amy said, 'He seems to be doing fine. He has put on weight, he is eating better. I think he appears happier within himself now'.[229] Generally he keeps good health.

5.116 Luke lives with his brother. He does not work. At one time, when he received benefits, he obtained gardening work through Jobseekers. The work involved carrying heavy loads on his back. Due to his low bodyweight, Luke found this work difficult and was absent for a week. On his return to work, Amy believes that he was picked on by the person in charge and so he stopped work. Luke sometimes looks on the internet for employment, but Amy does not think that he has any plans to find work.[230] She believes that Luke does not want other people to see him taking medication and then ask questions about it. Luke receives a monthly allowance from the Eileen Trust. When asked how Luke spends his time Amy stated:

He doesn't really do a lot at all. He is in the house quite a lot. If he is not with me, he will maybe be with his dad or his granddad but he doesn't go out drinking or pubs or anything like that. And he has never had a girlfriend. He just sort of keeps himself to himself.[231]

5.117 Amy worries about Luke because he does not have a job and has not been in a relationship. He once told her that he would never be able to have a girlfriend because he has HIV. He is concerned about being in a relationship as he feels that he would have to be open with the person about the fact that he has HIV.[232]

5.118 Amy stated that she is very bitter and angry about what has happened. She feels that it should not have happened. She stated that she tries to put it behind her but that her elder son's infection with HIV has affected them all. She feels guilty that she moved out of the family home and left Luke living there with his brother. She would like him to try to become independent, but Luke continues to ask her to accompany him to medical appointments, and when he has to do anything in town. She stated that Luke is very quiet and reserved: 'He is in the house all the time more or less'.[233]


5.119 Frances gave evidence about her father's infection with HIV and Hepatitis C from treatment he received for Haemophilia A. For the purposes of this chapter Frances' father will be referred to as 'James'. James was born in the 1940s. At the time she gave evidence, Frances was 41 years old. She has two younger brothers.[234] Her father died in 1990.

James' diagnosis with Haemophilia A and his treatment

5.120 James suffered from severe haemophilia, having less than 1% clotting factor. There was no family history of haemophilia and it is thought that his development of the condition was as a result of a genetic mutation. James' mother was told that it was unlikely that James would live to beyond two years of age.[235] James was always treated for his haemophilia at the Royal Infirmary of Edinburgh (RIE). Initially, he was treated with snake venom (a strange but not uncommon treatment for haemophilia in the 1940s and the 1950s), then cryoprecipitate and Factor VIII when these products became available. He needed treatment at least weekly, and often several times a week. James did not have home treatment for his haemophilia until Frances was about nine years old, early treatments having been administered in hospital.[236]

5.121 Due to his haemophilia, James was unable to attend school. At that time, schools were unwilling to accept children with severe haemophilia. He was home tutored for a while but he received no proper teaching and unsurprisingly he gained no formal qualifications.[237] His lack of schooling deprived James of the opportunity of meeting other children. He had an older sister and there were local children he knew. Despite this, James was a sociable person.[238] He was very active and had a real zest for life. He did not let his haemophilia hold him back.[239] Frances wished her father's occupation to remain confidential. Despite his lack of qualifications, James managed to teach himself a skill and use this to build up his own, successful business.

5.122 In order to try to avoid having to go into the hospital for treatment, James used to try and treat his bleeds with rest at home. In 1971, James asked his then consultant, Dr Davies, if it would be possible for him to receive prophylactic weekly injections of cryoprecipitate to see if this would mitigate the number of spontaneous bleeds from which he suffered. Dr Davies was willing to try this on an experimental basis with a dose of six packs of cryoprecipitate weekly. In his letter to James' GP about this, Dr Davies stated that James appreciated that there was a small risk of serum hepatitis or even developing an antibody to Factor VIII from the transfusions of blood products, but he thought that this would not be greater than the risk James had, at that time, from the frequent transfusions on admission following bleeds.[240]

5.123 By 1975, James was able to self-administer Factor VIII concentrate in the hospital. In a report to a life assurance company, Dr Davies reported that James was in good health except for his haemophilia. He wrote, 'Apart from his haemophilia he is very fit. Nonetheless this disorder constitutes a definite morbidity and mortality risk increase even with modern therapy'.[241] He noted that James had moderate joint deformity from bleeds, mainly of his knees and elbows and less so of other joints. Frances stated that her father's bleeds used to slow him down and they caused him pain. He did not complain of pain but he looked drawn. After he started home treatment, he would inject himself with Factor VIII and then rest. As a result of the frequent bleeds into his joints, James developed arthritis. Frances remembers that he always had slightly bent and swollen joints, especially in his knees and elbows. James received physiotherapy for his joint problems and often wore splints, including at night. He also attended orthopaedic surgeons for treatment and was offered surgical options to treat his left elbow. James was not keen to undergo surgery and so did not pursue that option.[242]

5.124 Initially, when James started home treatment, in about 1976, he treated bleeds when they occurred. Assisted by his wife, he kept a detailed record of each treatment he took.[243] Frances used to help him make the factor treatment up 'as it took ages to dissolve'.[244] James taught her how to give him an injection and, at the age of 10 years, Frances gave her first IV injection. In 1980, James had prophylactic cryoprecipitate three times a week for three weeks to try to settle a bleed in his left elbow.[245]

5.125 Frances was unable to say whether James was specifically warned of any risks associated with his treatment for haemophilia but thought that he would have asked about this. She said, 'He was big on being fully informed and wasn't afraid to ask questions. So I expect that he knew whatever risks were known at the time'.[246] It is clear from the medical records that James took an active interest in his therapy. For example, he explored the possibility of prophylactic weekly injections of cryoprecipitate in 1971, and discussed the risk of acquiring 'serum hepatitis' or developing an antibody to the Factor VIII blood products.[247] At this time it is likely that Hepatitis B was the candidate virus.

5.126 In 1980, Professor Ludlam replaced Dr Davies as the Consultant Haematologist treating James. Frances stated that her father was very happy with the care he received from Professor Ludlam and 'he had a lot of time for [Professor Ludlam]'.[248] In 1982, the family went on holiday to the United States. Professor Ludlam provided James with some Factor VIII to take with him. He advised James to try to avoid the commercial Factor VIII concentrates as 'they may well give you hepatitis'.[249] He suggested that James try to obtain cryoprecipitate for minor bleeds.

James' diagnosis with HIV

5.127 In about December 1984 Professor Ludlam told James that he had HIV.[250] Subsequent tests on stored samples of James' blood showed that his first positive HIV sample was on 20 June 1984. James had received treatment with 50 bottles of the HIV-infected batch number 0090 of Factor VIII.[251] Having looked at her old diary, Frances remembers that her father told her on 21 December 1984 that he was HIV-positive.[252] She believes that he would have told her 'very soon' after he was informed. Frances was a teenager.[253] At that time, James was running his own business. He had two business premises in Edinburgh and employed staff. Frances' mother did not work. About two weeks before her father told her that he had HIV, Frances heard a news item on the radio about people with haemophilia being affected by HIV in blood products. This meant that the news that her father had HIV did not come as a complete shock to Frances. James was 'quite matter of fact' about his diagnosis with HIV.[254] He told her the result of his HIV test, and what it meant as far as he understood it. He told her that the family would need to be tested for HIV. The risk to them all was low but there was a higher risk to Frances' mother and a risk to Frances as she had helped her father with his haemophilia treatment. He told Frances that he had to avoid blood contact with others. Because of this he moved into the spare bedroom as he used to have frequent nosebleeds. He knew that HIV would shorten his life, but was unsure about the progress of the disease. Frances recorded in her diary that her father told her that he could have five years left. James stressed to Frances that she was not to tell anyone ever about his diagnosis with HIV. He was a very private person.[255] She said, 'The main thing was the stress for secrecy. That seemed to be the only thing that was stressing him out'.[256] The family was subsequently tested for HIV at the haemophilia ward of the RIE and were all negative for the virus.[257]

5.128 Initially, James only told Frances and her mother about his diagnosis with HIV. Her two younger brothers were not told. Other family members were told later. Frances described this as 'a difficult time emotionally'.[258] Frances' mother was upset. She 'stuck her head down and didn't talk about it at all. My mum ... wasn't much of a talker...'.[259] Like her husband, she was a very private person.[260] Sometime after James' diagnosis with HIV, he and the family were offered counselling by Billie Reynolds, the Haemophilia Sister at the RIE. James refused counselling on behalf of them all. He thought that counselling was 'a waste of time and for people who were weak ...'.[261]

5.129 Frances stated that, from the time of her father's diagnosis, '[T]here was the beginning of a strange sort of role reversal'.[262] James was very protective of his wife, and there was a shift to the position where he and Frances protected her 'from the harsh reality of life'.[263] Frances used to join her father in his room in the evenings and they would talk. 'He needed someone to speak to and he spoke to me'.[264] She said, 'it was almost like I became my Dad's counsellor, I was the person he spoke to and made plans with. So it changed the dynamic'.[265] Understandably these talks took their toll on Frances. She stated:

It was very difficult because I couldn't talk to anybody about it. So ... I didn't know how to support him. I didn't know what to do. So I had this overwhelming feeling of responsibility but I didn't know how to meet it ... and I had nobody to ask.[266]

5.130 Frances' schooling was affected by this too. She had always enjoyed learning but she went from being top of the class at school to struggling academically.

James' symptoms of HIV

5.131 In about 1986 James became noticeably unwell. He lost weight and his hair thinned. On 7 September 1986 he was admitted to the Royal Infirmary in Glasgow as he had blood in his urine and left-sided ureteric colic (severe pain in the region of the left ureter). He passed some blood clots and the pain settled. He was discharged the following day and attended the Haemophilia Centre at the RIE. He gave a three-week history of feeling generally unwell with malaise and tiredness. He had intermittent sweats but no real drenching night sweats. He had shortness of breath on exertion and while climbing stairs. James continued to suffer from blood in his urine and from left flank pain. On 11 September he was admitted to the RIE for treatment with bed rest, Factor VIII and Pethidine (an opioid painkiller). He recovered with this treatment and was discharged home on 13 September.[267]

5.132 Three weeks later, on 3 October, James was readmitted to the RIE with recurrence of malaise and night sweats. He was also suffering from nausea, vomiting and intermittent shortness of breath. He looked generally unwell and had a mild temperature. He had palpable cervical and axillary lymphadenopathy (swollen lymph nodes in the armpit). His symptoms settled over 48 hours and he was discharged on 5 October. A provisional diagnosis of AIDS-related complex (ARC) was made.[268]

5.133 In about December 1986, James was referred to the Wart Clinic at the RIE for treatment of a stubborn wart on the sole of his foot. He received regular treatment with liquid nitrogen and occasionally the wart was pared. He used salicylic acid plasters at home. Despite this treatment, by March 1987 the wart had grown larger and he had developed a new wart on the sole of his foot. The fact that he had haemophilia and was HIV-positive limited the therapeutic options available. The dermatologist treating James asked Professor Ludlam if he had any other suggestion about therapy and whether surgical treatment would be an option.[269] In June 1987 James was discharged from the dermatology clinic, having failed to attend his last two appointments. The doctor noted that when he had last seen James, the warts were improving and he assumed that the warts had resolved.[270]

5.134 Between the autumn of 1986 and the summer of 1987, James suffered from intermittent bouts of malaise and night sweats. In June and July 1987 he suffered from persistent diarrhoea, night sweats, malaise, some weight loss and shortness of breath on exertion. Between July and October that year he continued to suffer from malaise, night sweats and occasional diarrhoea.[271]

James' treatment with Zidovudine

5.135 By letter dated 1 October 1987, Professor Ludlam wrote to James advising him that Zidovudine was available as a treatment and that it might be of benefit to him. He asked James to attend an appointment with him on 14 October to discuss this potential treatment.[272] James told Frances about the possibility of treatment. She stated, 'He absolutely wanted to try whatever was going'.[273] At the appointment it was noted that James had had 'longstanding liver enzyme disturbances since 1983'.[274] Non-A non-B Hepatitis and alcohol are noted as being possible causes for this. It was noted that the three indications for James starting treatment were the fact that he had developed ARC, the fact his T4 cell count was progressively declining and HIV antigenemia (the presence of HIV antigen in the blood). On 21 October 1987, James started treatment with Zidovudine, 200 mg every four hours with a double dose at bedtime, presumably so that he could sleep undisturbed for eight hours. During the first week of treatment James experienced a metallic taste in his mouth, but appeared not to suffer from any other side-effects of the medication. James continued to suffer from occasional night sweats and fatigue.

5.136 At the beginning of June 1988 James suffered from increasing breathlessness on exertion with occasional bouts of breathlessness whilst at rest. He had a dry cough. On 14 June he was seen by a Senior Lecturer in the Department of Respiratory Medicine at the City Hospital, Edinburgh. As well as describing the symptoms of breathlessness, James also told him that he had been suffering from lethargy for six months. James was investigated for pneumonia, particularly PCP, but these tests were negative. He was found to have mild airways obstruction and was prescribed an inhaler of Beta 2 agonist (a drug used to treat asthma). After taking this treatment for a week or so, James was 'slightly better'.[275] Towards the end of June 1988, he developed an upper respiratory tract infection and was prescribed Flucloxacillin for this.[276]

James' diagnosis with non-A, non-B Hepatitis

5.137 On 28 June 1988 James saw Dr Finlayson, a Consultant Physician at the Gastrointestinal and Liver Service at the RIE, having been referred to him by Professor Ludlam. Dr Finlayson noted that James was mildly jaundiced, his liver was 'very considerably enlarged' and his spleen was palpable. Dr Finlayson considered that James' symptoms were consistent with a diagnosis of chronic liver disease and he thought it was 'probably the consequence of a chronic non-A, non-B Hepatitis virus infection acquired from his blood product therapy'.[277] This was consistent with the state of knowledge about non-A, non-B Hepatitis at the time. He also considered two other possible causes of his liver disease: first, that James was developing AIDS in light of his recent respiratory illnesses and, second, that he was developing a lymphoma in relation to his HIV infection. Dr Finlayson arranged for James to undergo an ultrasound of his abdomen to look at his liver and his spleen and also to see if there were any detectible lymph nodes there. The ultrasound appearances were of diffuse liver disease but no evidence of any enlarged nodes in the upper abdomen. Dr Finlayson then wanted James to undergo a liver biopsy but he was not at all keen on this. He was aware of the risks of a liver biopsy to him, as a person with haemophilia, and could not understand what the benefits would be. In the event he did not undergo a liver biopsy until the day he died.[278]

5.138 In July 1988, James developed pain in the left side of his mouth. The floor of his mouth was tender and he had an ulcer of about 0.5 cm in diameter on the surface of his tongue. He was treated with Flucloxacillin and then Penicillin but neither had any effect. He was referred to the Department of Oral Medicine at the Dental Hospital in Edinburgh for advice about treatment.[279] He saw a consultant there. The consultant noted, on examination, that James had 'a major recurrent aphthous ulcer[280] which is one of the more common manifestations associated with HIV infection'.[281] He also noted that James showed signs of early periodontal disease which needed to be treated aggressively from a preventative point of view as it was likely to become an aggressive form of the disease. The doctor arranged for James to have routine oral hygiene care. He prescribed Corsodyl mouthwash for symptomatic relief of his mouth ulcer, which had started to heal.

James' treatment with Interferon

5.139 Without carrying out a liver biopsy, Dr Finlayson and Professor Ludlam were unable to make a definitive diagnosis of the cause of James' liver disease. They both agreed that a liver biopsy 'would not be without hazard' due to James' severe haemophilia, his prolonged prothrombin time (a measure of the time blood takes to clot) and his propensity to allergic reactions to Factor VIII. Accordingly, they decided to treat him for non-A non-B Hepatitis. In about October 1988, James started a trial of three million units of Interferon treatment, three times a week. Professor Ludlam advised James' GP that it was possible that James might 'be a little upset by the treatment and develop flu-like symptoms'.[282] He planned to reduce the treatment if these side-effects were troublesome. Frances remembers her father taking the Interferon treatment. She said, 'it made him feel quite ill and he had flu-like symptoms. He was very tired and had dreadful diarrhoea'.[283] He continued to work throughout the treatment. Frances stated that her father had a very strong work ethic and 'if he could stand up he went to work'.[284]

5.140 In about January 1989, James suffered from a bad head cold. He was prescribed Ampicillin (an antibiotic used to treat bacterial infections) for this and the cold resolved. Professor Ludlam saw James in January 1989, and noted that he had made no improvement after the trial of Interferon and so Professor Ludlam stopped this treatment.[285]

The deterioration in James' condition

5.141 In 1989 James' breathlessness, from which he had suffered since about September of the year before, started to worsen. He remained tired and lost a lot of weight.[286] He was referred to the Department of Respiratory Medicine Clinic at the RIE and underwent a number of investigations there, including a chest x-ray, blood tests and measuring of his transfer factor for carbon dioxide. In May 1989, tests revealed that James was anaemic and this was thought to be the cause of his breathlessness at that time. James was reassured that he did not have any chronic infection in his lungs, although he was warned that this remained a possibility.[287]

5.142 Around this time, James also suffered from a sore throat and a cough. He was tired and his cervical glands were swollen. A throat swab was taken and he was prescribed Cephalexin (a drug used to treat bacterial infections). On 2 June 1989 James discussed an impending family holiday with the doctor he saw at a clinic appointment. He told the doctor that he was very keen to go to Spain with his family; he considered that it might be the last holiday he would have with them. He realised that the trip would curtail investigations into his condition and that he might develop other infections or medical problems.[288] The day after this discussion James was admitted to the RIE with a 24-hour history of non-productive cough, increased breathlessness, several episodes of vomiting and a macular rash (a rash characterised by small flat spots). On admission his temperature was 40°C. James underwent a number of investigations. Bronchoscopy confirmed a diagnosis of PCP. He was treated with high doses of intravenous Co-trimoxazole. This was discontinued on 12 June following which James received a week's course of high dose oral Co-trimoxazole. In addition he was transfused with two units of red cells. He underwent a marrow aspirate and trephine (a biopsy of bone marrow sample) which revealed moderately hypocellular (containing fewer than the normal number of cells) marrow. This is a known side-effect of treatment with Zidovudine. James' treatment with Zidovudine was stopped. He was discharged home on 13 June and at that time was prescribed oral Co-trimoxazole, Flucloxacillin, Lactulose (a medication used to treat constipation) and Bisacodyl (a laxative drug). It was planned that James be prescribed a Pentamidine nebuliser as prophylactic treatment for PCP as soon as the equipment for it became available.[289]

5.143 While he was an in-patient being treated for PCP, Frances' two brothers and her mother left to go on holiday to Spain. James did not disclose to them how seriously unwell he was. A day or two after his discharge he flew out to Spain to join them. Frances remembers driving him to the airport. She did not go on this holiday as she had to sit exams.

5.144 Frances stated that she was getting on 'badly' in her courses due to her father's illness. During his admission to hospital, James told one of the doctors that Frances was sitting exams at that time. This doctor wrote a letter addressed 'To whom it may concern' at the place where Frances was studying explaining that James was an in-patient in the hospital and that Frances was under external pressure. He asked that, with this in mind, 'a compassionate attitude' be taken to her exam results.[290] Frances also spoke to her tutor about the pressure she was under. She failed the four exams she sat that year.[291]

5.145 Frances 'really struggled' with her courses.[292] She just managed to pass the exams at the end of first year, but she failed her second year exams twice. She considers that, as a result of her father's illness, she had quite a different student experience to that of her peers, and she did not lead a normal student life. She used to return home a lot. She felt separate from her peers as they seemed to be out having fun, drinking and partying while she felt 'distraught' and was trying to deal with her father's illness.[293]

5.146 In July 1989 James suffered from abdominal distension, constipation and nausea. He looked anaemic and slightly jaundiced. He developed a small abscess at the site of the bone marrow biopsy procedure. He was prescribed antibiotics for this and it improved. On 23 July, James was given nebulised Pentamidine with no ill effects. His oral Co-trimoxazole was stopped and he continued to receive doses of Pentamidine instead. He continued to suffer from abdominal distension, constipation and tiredness. He developed a further rash. It was suggested that he see Dr Finlayson again, but James was not keen to do so as he did not wish to have a liver biopsy.[294]

5.147 On 30 August 1989 James met with Billie Reynolds, the Haemophilia Sister. She recorded their discussion in the clinical notes:

Spoke with [James] today. He expressed some wishes regarding his impending demise. He does not want an autopsy, and doesn't wish his wife to be approached on this subject. He is concerned about the writing on the death certificate. Was re-assured about wording on the death certificate.

[Frances] would like a screen placed over the door of the cubicle to ensure privacy when he is very ill.

He has given his consent for us to tell any patient that enquires about him, what is wrong, when he is very ill.[295]

5.148 James continued to attend the hospital regularly for review as his condition deteriorated. On 3 October he reported that he was 'feeling terrible'.[296] He was tired and sleepy. His abdomen was more distended and uncomfortable. He developed bleeding from his rectum. He asked about re-starting Zidovudine or another 'new American drug'.[297] On 11 October he restarted treatment with Zidovudine. He asked about treatment with Didanosine, but he was told that this was not available. At the end of October James developed itchy skin and eyes; problems which were particularly marked at night.[298] He was referred for a dermatology opinion. The dermatologist considered that the rash was most likely related to his jaundice, or the Zidovudine treatment. She recommended emollient cream.[299]

5.149 In November 1989 James was admitted to the RIE for review by Dr Finlayson. His main symptoms at this time were hepatomegaly (enlarged liver), jaundice, itch and fatigue.[300] He was diagnosed with cholestatic jaundice (jaundice resulting from inability of bile to flow from the liver to the duodenum). It was suggested that James undergo an ultrasound and CT scan. He was prescribed Questran (a type of medicine called a bile acid sequestrant which works in the intestine where it binds to bile acids).[301] This improved his itch for a while.

5.150 On 27 January 1990 he was admitted to hospital with a temperature, shortness of breath and coughing. His temperature returned to normal and investigations of his chest were normal. He was discharged home the following day.[302] He continued to suffer from intermittent breathlessness.[303] On 6 June James was again admitted to hospital after suffering a reaction to the factor treatment he had received for persistently bleeding gums. While an in-patient, he had a temperature and he was started on broad spectrum antibiotics. He recovered quickly. His treatment with Zidovudine was discontinued and it was planned that he would start treatment with Didanosine.[304] In July, James developed bloating of his abdomen, and there was concern that this was caused by ascitic fluid (fluid which accumulated in the abdominal cavity).[305]

5.151 Some weeks after this, James woke one morning suffering from a bleed in his abdomen. He said to Frances' mother 'this is it'.[306] He was admitted to hospital that day. He underwent a laparotomy[307] at which the possibility of bleeding from his spleen was raised. A splenectomy was performed but no other source for the bleeding was identified. After this procedure he remained hypotensive (with low blood pressure) and it became clear that the intra-abdominal bleeding was continuing. He was treated with 20 units of blood, fresh frozen plasma, platelets, Factor VIII, antibiotics, adrenaline and dopamine. Sadly, the bleeding persisted and James died later that night.[308]

5.152 On the day James died, a Friday, Frances was preparing to sit exams on the following Monday. This was her 'last shot' at the exams. Having failed the exams a number of times before, she had been expelled. She successfully appealed her expulsion and was given one last chance to pass the exams.[309] James was aware of this and was keen that Frances sit her exams. When he developed abdominal bleeding he asked his wife not to tell Frances. However, Frances' brother telephoned her and Frances was able to reach the hospital before her father died. When she arrived her father was on a ventilator. Frances' mother asked her 'How will I know when he's gone?' and Frances said that she would tell her. Frances arranged his funeral.[310]

5.153 James' request for AIDS not being recorded on his death certificate was adhered to and no autopsy was undertaken. His death was reported to the Procurator Fiscal's office due to the fact that he was HIV-positive.[311] A liver biopsy taken at the time of the splenectomy revealed that he had established cirrhosis.[312] A retrospective test carried out on 13 January 1992 on a blood sample dated 5 January 1988 confirmed that James was positive for the antibody to the Hepatitis C virus.[313]

Specific impacts of James' infection with HIV

5.154 Frances stated that finding out he had HIV had 'a massive impact' on her father.[314] She stated that, when he was younger, her father knew he would not live a long life as a result of his haemophilia, but his life expectations changed when treatment with cryoprecipitate and factor concentrate became available.[315] Knowing that he had HIV curtailed his greatest hobby (which Frances wishes to remain confidential). It also had 'a huge impact' on his relationship with his wife.[316] Frances stated that her father was a very tactile man and not being able to share a bed with his wife would have been 'a real trauma' for him.[317] It also took his focus away from his children, and he was unable to father them as well as he had done before his diagnosis with HIV.

5.155 James was a successful businessman and was fairly comfortably off. As he had to reduce work due to his illness, there was less income for the family. When he died his business was still operational. After he was diagnosed with HIV, James took out some life assurance. He managed to find some policies which did not exclude paying out even if the death was attributable to HIV. On his death, the MacFarlane Trust made a payment of £60,000 to the family. This money, together with the rental from the shops which James had owned, and the 'money from insurance' supported Frances' mother and Frances' younger brother.[318] James had arranged everything for his wife. After his death, Frances' mother did not know how to pay the gas bill.

5.156 Frances' mother was devastated by her husband's death, she 'fell apart'.[319] She had 'totally devoted herself to [James]. Her family and her husband were her whole life'.[320] After James was diagnosed with HIV, both her father and mother started drinking. After his death, Frances' mother continued drinking and she eventually became an alcoholic. She also increased her smoking habit from about 20 cigarettes a day to 60. Latterly she drank coffee and vodka and did not eat. In 2000 she died weighing just five stone.[321] Frances was 30 years old when her mother died. At this time her younger brother was in higher education so Frances and her other brother supported him through this.[322]

5.157 The elder of Frances' two brothers was not told about his father's illness until a few months before his father died, when he was 18 years old. Up until this time, her father's illness had been downplayed. The family was used to him going to the hospital. The elder of the two brothers was unaware how unwell his father was. Frances remembers persuading her father to tell this brother about his infection because she believed that it was important that he have some warning about his father's condition. After the elder brother was told about his father's illness, he had only a short period of time to come to terms with this before his father died. He became very angry.[323] Frances believes that this brother was a little resentful of her as she knew more about her father's illness than he did. After her father died, he felt that he needed to be the man of the family but did not know how to be that man. Frances stated that he is similar to his parents in that 'he is not a talker, so we never really discussed how it affected him because he doesn't want to talk about it; but his life became smaller'.[324] Frances' brother had a road traffic accident which affected his ability to continue working in his job. Frances believes that it is likely that he is fit for other types of work but he has not worked since the accident. Frances believes that he is 'emotionally damaged. It's too big a thing to retrain. Whereas if my dad had been around, he would have had more of a push, more support'.[325]

5.158 The younger of Frances' two brothers provided the Inquiry with a statement. He recalled, when he was five years old, being taken to the blood transfusion centre for a blood test. He did not know why. When he was 18 or 19 years old he discussed the blood test with his mother and was shocked to learn that the blood test was to determine if he had been infected with HIV. He remembered that his father was often in hospital but he did not know the reason for this. His parents slept in separate beds for as long as he could remember. He thought that this was normal because he slept in a separate bedroom from Frances. He stated that once when a friend came to the house, he showed him around. His friend was amazed when he saw that his parents slept in separate beds.[326]

5.159 He stated that his father could be an angry, irritable man who, occasionally, was very mean to him. When he was about seven years old, his father threatened to throw out all his toys as he had not tidied his bedroom in the allocated time. He thought that his mother was the voice of reason.[327]

5.160 He was 10 years old when his father died. Frances was away continuing her studies and his older brother seemed 'a very angry person' at this time.[328] The older brother remained at home until he attended higher education about two years later. Frances' youngest brother considered that all his father's friends disappeared after his father died. He felt angry with them for not supporting his mother. When he was older he learned that some of the friends had tried to support her. They had tried to introduce her to other men but she was not interested. After his father died, he stated that he did all the gardening and as he got older he did more of the housework.[329]

5.161 When he was 16 years old, his mother said to him that she was proud that she had seen all her children grow up, and that she could die now. By that time, she had no appetite and was very frail. He did not recall her drinking excessively during his school days. When he returned home from school she was always interested in his day, and was not drunk. She smoked a lot. By the time he was 18 years old, his mother was drinking more. She would get up during the night and fall over. He got up then to help her back to bed. When he was 20 years old, his mother fell during the night and broke her hip. She was admitted to hospital where she died three weeks later from liver failure.[330]

5.162 After her father's death, Frances did better academically and obtained a professional qualification. She has become prone to anxiety and depression. Her father's infection with HIV and her mother's subsequent problems have played a significant role in her development of these symptoms. In April 1997 Frances attended her GP with stress, low mood and anxiety symptoms. Frances believes that this was a delayed reaction to the stress she was under as a result of her father's illness. Frances was initially prescribed Fluoxetine (an antidepressant medication). This was changed to Paroxetine (another antidepressant medication) in August 1997, and she continued to take this until the following December. In January 1998 she again attended her GP with recurrent low mood and anxiety. This did not improve by February and so, once again, she was prescribed Paroxetine. Initially Frances responded well to this, but she became of low mood and anxious again in late 1998. In January 1999 her dose of Paroxetine was increased. She was signed off work from February until September 1999. She attended a psychiatrist for treatment, and he prescribed her with Venlafaxine (a different antidepressant medication) with good effect. She continued to take Venlafaxine until October 2001.[331]

5.163 Frances' GP provided the Inquiry with a brief medical report. In it she stated:

Over the years Frances has demonstrated a very resourceful personality, coping incredibly well ... as well as dealing with her family issues. I have no doubt that her father's illness and in turn the effects that this had on her family have had an immense role to play in [these problems].[332]

5.164 Frances stated that it is hard for her to imagine what her life would have been like had her father not been infected with HIV. She believes that, had she had some support at the time 'it possibly wouldn't have had quite such an ongoing effect'.[333] She stated:

I think one of the difficult things is a sense of shame ... and I know there is not real shame but they are not neat, tidy acceptable deaths. It subsequently means that I don't feel able to talk about them. My dad had AIDS and my mum was an alcoholic. It's not, you know, 'My dad had a heart attack'. It has contributed to quite a private personality. This is - this has been quite a difficult process for me because I'm talking about things that I don't talk about. And I have done the work, you know, I have had some counselling myself, I don't share my parents' views on counselling.

I have done the work and I have dealt with it, but it's just utterly changed my life. It has affected how I relate to people. It has no doubt affected my choice of [work], it has affected my relationships. It has influenced my choices in - whether or not to have a family. I don't have children. It was just too difficult to think about, because my dad is a haemophiliac, I'm a carrier. It was too difficult to think about having a child but it was bad enough going through it with my dad. With the possibility of going through it with a son was just too hard. That makes me sad.[334]


5.165 At the time he gave evidence to the Inquiry, David was 44 years old. He is married and has a daughter. David was unemployed when he gave evidence, and he wished his previous occupation to remain confidential. David has Haemophilia B. He acquired both HIV and Hepatitis C from his treatment with blood products.[335]

David's diagnosis with Haemophilia B and his treatment

5.166 David was diagnosed with Haemophilia B when he was three years old. He has a family history of haemophilia. Five of his cousins have Haemophilia B. His clotting factor is about 13% of normal, and his haemophilia is classified as moderate.[336]

5.167 As a child David was treated at Yorkhill Hospital in Glasgow, and this is where, in October 1970, when he was four years old, he received his first treatment with blood products. After a fall, he sustained bruising of his face and a bleed in his left knee. He was treated with a rapid intravenous injection of fresh frozen plasma.[337]

5.168 David only needed treatment for his haemophilia if he had an accident, or received dental treatment. He estimated that he had such treatment about once a year. As a child his treatment for bleeds usually involved an admission to hospital for about a week. In addition to treatment with blood products, he was also treated with physiotherapy, splints and bed rest. He often used a wheelchair while he was in hospital.[338]

5.169 David recalled that, in about 1977, treatment for his haemophilia became easier. This is likely to have been when he started treatment, in hospital, with Factor IX concentrate. It reduced the time taken to receive treatment, and it seemed to be effective more quickly. As a result he spent less time in hospital.[339]

5.170 David was aware that it was not normal to need treatment after a fall so he came to understand that he was different from his friends. At school he was wary of contact sports. He would have liked to play rugby but was unable to do so. Instead he played football and sometimes sustained injuries as a result. In 1979, when David was 13 years old, he sustained a bump to his right knee while playing football. He was treated with bed rest, Factor IX, a splint, a cast and then a walking support. He missed about three months of school due to this injury. His school was very supportive of him. When he was discharged from hospital some of the teachers came to his home and taught him there. They sent him homework. David believes that his haemophilia did not have a detrimental affect on his schoolwork, or the qualifications he obtained at school.[340]

5.171 In 1981, when David was about 15 years old, his haemophilia care was transferred from Yorkhill Hospital to the Glasgow Royal Infirmary (GRI), under the care of Professor Forbes.[341] In 1982, when David was 16 years old, he started to administer Factor IX concentrate at home. At that time David had marked synovitis (inflammation of the synovial membrane) of both knees. He was instructed to give himself two vials of Factor IX concentrate weekly. He was also told to take Factor IX concentrate at the first sign of a bleed. David had a good response to the regular treatment with Factor IX and the pain and stiffness in his knees improved. In 1983 blood tests showed that David had raised serum transaminases (enzymes in the blood). Professor Lowe, a Senior Registrar at the time, noted that such results were commonly found in people with haemophilia who were on regular treatment. In keeping with the clinicians' state of knowledge at the time, it appears that non-A non-B Hepatitis was considered as a cause for this. David has no recollection of these blood test results being mentioned to him.[342] In 1984, during routine screening for Hepatitis A, David was warned of the risk of infection with this virus from his treatment. He was not warned of the risk of being infected with any other virus as a result of his haemophilia treatment.[343]

5.172 On 25 January 1985 David attended a clinic appointment at the GRI.[344] As usual he gave a blood sample. This was tested for HIV and was reported on 28 January to be negative. David told the Inquiry that at that time he was unaware that he was being tested for HIV, although he did understand that various tests were undertaken as part of routine screening at clinic appointments. David continued to take prophylactic Factor IX until about July or August 1985. By then David's knee problems had settled. He kept a record of each treatment he gave himself. This record detailed the date he administered the treatment, and the serial numbers of the bottles of factor concentrate that he used. David handed these records into the hospital at the time of further treatment.[345]

David's diagnosis with HIV

5.173 On 8 November 1985, David attended one of his routine haemophilia clinic appointments. At this time, David was 19 years old and he was working. He has worked in the same industry throughout his working life. The notes of this appointment record that David was feeling well. They also record that he was HIV-negative as at 25 January 1985 and that he was given a Haemophilia Society booklet.[346] David had no recollection of being told that a test had been negative for HIV. He gave a blood sample at this appointment which was tested on 12 November and found to be HIV-positive.[347] When David gave blood samples at his clinic appointments, he understood that these samples were being tested to monitor his haemophilia and to check for Hepatitis A and Hepatitis B. He did not know that his blood sample would be tested for HIV.[348]

5.174 About a week after the appointment on 8 November 1985 David received a telephone call from the Haemophilia Department asking him to come in to the hospital to meet with Professor Lowe. He was not given any explanation for this. Having just attended a clinic appointment, David was unsure of the purpose of the meeting. He had heard of HIV from articles in the press. He was worried about it as he knew of the risk of transmission of the virus by blood products but, as stated above, he did not know that he had been tested for it.[349]

5.175 On 2 December, David attended the arranged appointment with Professor Lowe. David was alone when he went to this appointment. He felt that, while having someone to 'lean on' would have been helpful, it would not have changed the fact of his infection.[350] Professor Lowe explained to David that he had been infected with HIV from blood products, and that he was now HIV-positive. David formed the impression that Professor Lowe was not 'entirely comfortable' speaking one-to-one with him about this and it felt to David as if Professor Lowe wished to convey the news to him and then move on. He thought that Professor Lowe spoke to him in a very matter of fact way.[351] Professor Lowe told David that the doctors did not know much about the virus, and gave David some leaflets about general wellbeing and what was known about the virus at the time. He warned him of the risks of secondary infection. He told him about the dangers of cuts, blood spills and unprotected sex. David was told that his girlfriend would need to be tested for HIV. Professor Lowe told him to lead a healthy lifestyle. He told David that he would continue to monitor his condition by the usual routine checks and that they would give him further information about the virus as it became available. As David recalled, apart from this general information, no advice, counselling or support was offered then or subsequently.[352] The notes of this appointment suggest that David was also told that he had non-A non-B Hepatitis, although he does not remember being told that at the time.[353]

5.176 It was put to David in oral evidence, that Professor Lowe's position in response to David's characterisation of his manner, was that telling him about his infection was very difficult, because of the uncertainty about the virus and its prognosis, and that he, Professor Lowe, had tried his best.[354] David made no significant comment.[355] It was also suggested that he had been offered counselling, after his diagnosis, from Dr Wilkie and/or Miriam Guthrie, a social worker at the GRI. David said that he was aware that there was a social worker, but that he had never spoken to her.[356]

5.177 David felt numb immediately after being told that he was infected with HIV. He stated that he then felt a number of emotions. He thought, 'Well, what does this mean and what does the future look like or lack of it'?[357] From what he had read in the newspapers, he thought that the prognosis for him was a life expectancy of eight to 10 years.[358] David also felt angry that he had been tested for the virus without his knowledge, and without his consent.[359] Questions of practice, in 1985, in relation to the testing of blood samples without a patient's consent are discussed in detail in Chapters 33 and 34. David was still living with his parents and after this appointment he returned home and told them about his diagnosis. They were shocked, and wanted to speak to someone at the hospital to understand the implications of this diagnosis for David. On 4 December, David and his mother saw Professor Lowe at the hospital. David's recollection is that their discussion then was very similar to the discussion he had had with Professor Lowe two days before.[360] David's girlfriend was tested for HIV. She and David attended an appointment with Professor Lowe later in December. She was advised that the result of the test was negative, but that she should undergo repeat tests.[361]

5.178 Following the appointment on 2 December, Professor Lowe advised David's GP that if David needed any blood tests, they should be carried out by the Haemophilia Unit at the GRI. He also arranged for David's dental care to be transferred from his normal dentist to the hospital dentist, so that all appropriate precautions could be taken.[362]

5.179 After his diagnosis with HIV David felt 'huge uncertainty'.[363] He stated:

[A]t that point it was a case of almost living from day-to-day, every indication at that point was you could expect a life expectancy of eight to ten years and each time you attend the unit, you are wondering 'What are my results going to be now? Is it getting any better? Is it worse? Is it stable?' You just don't know.

So there was always the anxiety and a general feeling of anxiety, just simply because you had no idea what the future would be like, and I guess being guarded as well in your relationships with people.[364]

5.180 Due to the 'huge stigma' surrounding HIV, David did not tell anyone other than his parents and his girlfriend about diagnosis with it. He did not tell his brother, sister or any of his friends.[365] His siblings still do not know that he is HIV-positive.[366]

David's symptoms of HIV

5.181 At the time David was diagnosed with the virus in December 1985, he had some 'small enlarged lymph nodes in the neck and somewhat larger lymph nodes in both [armpits]'.[367] He carried on attending three-monthly clinic appointments at the Haemophilia Unit. He often saw a junior doctor and gave blood samples. He assumed that the doctors monitored his HIV status, but this was not discussed with him.[368] In June 1986 David had a palpable lymph node on the left submandibular region (situated under the jaw bone), but was otherwise well.[369] In April 1987 he had swollen lymph nodes in the left supraclavicular (neck) and right axillary (armpit) regions.[370] In February 1988 he had no swollen lymph nodes.[371]

5.182 In November 1988, David was admitted to the GRI due to bleeding gums. He was treated with IV antibiotics and made excellent progress. A swab of his gums was taken and showed evidence of a heavy mixed growth of mouth flora. The report of the sample noted that the significance of the result was doubtful as little was known about the microbiology of dental plaque in HIV-positive individuals.[372]

5.183 Additionally, in 1988, David developed sinusitis and persistent warts on his hands. He had swollen lymph nodes under his armpits. His CD4 count remained normal. Liver function tests showed continued elevation in transaminases. In August 1989 David's general health was good. He had no swollen lymph nodes. He suffered from bleeding gums and once again this was thought to be due to a bacterial infection. He was treated with IV antibiotics followed by oral antibiotics.[373] At a review appointment in March 1990, David was found to have developed swelling of lymph nodes in both armpits. His serum transaminases remained raised.[374]

5.184 David was encouraged to attend his three-monthly clinic appointments. It was quite a challenge for him to do so as his employers were unaware of his condition. The hospital was 10 miles from his place of work. He stated that he was always vague with his employers about why he needed to go to the hospital. Also, he tried to fit his clinic appointments around a time when he would be on annual leave, or when there was an easy way to attend the hospital without having to explain why he was absent from work.[375]

5.185 In May 1990, David had persistent soft enlargement of his cervical and axillary lymph nodes which meant that he fell into the category of persistent generalised lymphadenopathy as regards his HIV infection. His CD4 count had fallen slightly to 429 cells/mm3; this was at the lower end of the normal range. He continued to have elevated serum transaminases. Professor Lowe mentioned the possibility of treatment with Zidovudine. As he felt well, David was resistant to the idea of treatment.[376]

5.186 In July 1990 David got married. Before their wedding David told Professor Lowe that he and his fiancée had a full discussion about the risk of transmission of HIV infection. They used condoms and took precautions with blood. Professor Lowe offered David's fiancée the opportunity to meet with the Haemophilia Unit social worker, or a consultant gynaecologist, but David's fiancée declined this.[377] Professor Lowe also gave David advice about holiday insurance for his honeymoon.[378] David was aware that if he declared that he was HIV-positive he would be declined cover and so he did not declare this and bought travel insurance to cover other risks.[379]

5.187 David remained well. In October that year the possibility of treatment with Pentamidine (a medication given to prevent PCP) and Zidovudine was raised with David. He remained reluctant to have treatment unless it was necessary.[380]

David's diagnosis with Hepatitis C

5.188 In April 1991 David tested positive for the antibody to the Hepatitis C virus.[381] Around this time Professor Lowe informed him that he had been infected with Hepatitis C from blood products.[382] David stated,

It felt exactly the same as when he told me I had got HIV. He was very matter of fact about it. He did not tell me much about the severity of the virus, the health implications of it or the risk of secondary infection. He told me that they would continue to monitor my liver function tests at my routine haemophilia clinic appointments.[383]

5.189 Between 1991 and 1997 David's CD4 count fluctuated between about 270 cells/mm3 and 370 cells/mm3.[384] Other than swollen lymph nodes, David remained asymptomatic in respect of both HIV and Hepatitis C. He continued to attend the GRI for monitoring of his condition. In November 1995 the responsibility for the HIV monitoring and managing of haemophilia patients at the GRI was transferred to a consultant specialising in infectious diseases.[385] Towards the end of 1997 David developed a facial rash. He was prescribed Tetracycline (an antibiotic cream) for this.[386] In May 1999, David's CD4 count was noted to have shown a very slow decline. The doctor considered that he was at risk of opportunistic infections and so prescribed him Co-trimoxazole indefinitely. David was warned of a 5-10% risk of hypersensitivity reaction to this medication. His viral load of HIV was also noted to have increased 'modestly', but David remained reluctant to start antiretroviral therapy.[387]

5.190 David was aware that once he started taking the treatment he would have to continue to do so, and it would then become part of his daily life. He felt that once he started taking medication he would be 'on a downward spiral'.[388] Instead, David did what he could to stay healthy. He took exercise, watched his diet, did not smoke and did not drink to any great extent.[389]

Family planning advice

5.191 In 1992, Professor Lowe referred David and his wife to a Senior Lecturer in Women's Reproductive Health at the Glasgow Royal Maternity Hospital to discuss the possibility of having a family.[390] David and his wife wanted to obtain more information about the options available to them at that time. David stated, 'We wanted to have a family as naturally as possible and really risk-free'.[391] David was unwilling to put his wife at any risk of acquiring HIV.[392] Having had an initial discussion with the doctor about their options, they were re-referred to her in October 1994.[393] David found seeing the doctor very helpful. She told him a lot about HIV with regard to looking after himself, the precautions he should take, the health implications of the virus and the risk of secondary infection.[394] In 1996 the doctor contacted a colleague in London to explore the possibility of sperm washing, followed by artificial insemination. She was told that, at that time, the service was not yet available in the UK and that the limited tests of the procedure in Italy had not provided proof that there was no risk of infection to the woman.[395] Having considered the options open to them, David and his wife decided that the best option was donor insemination. They attended the Assisted Conception Service at the GRI and their daughter was born as a result of this procedure.[396]

5.192 Over the years and due to his fluctuating CD4 count and viral load, there were frequent discussions about treatment. In 2000, David was found to have Genotype 3 of Hepatitis C which was known to be 'relatively favourable' to treatment with Pegylated Interferon.[397] David was given some written information about Pegylated Interferon and asked to consider it.

5.193 In April 2001, David and his wife were again referred to the doctor at the Glasgow Royal Maternity Hospital for advice about having a second child. They were interested in discussing the possibility of sperm washing and artificial insemination. By this time Dr Seaton, an Infectious Disease Consultant had taken over from the previous consultant. Dr Seaton was planning to treat David with Pegylated Interferon and Ribavirin. David was told that conception was contraindicated while taking this treatment, because of the unknown risks of congenital abnormalities.[398]

David's treatment for HIV

5.194 In July 2002, David's CD4 count 'dropped substantially' to 198 cells/mm3.[399] Dr Seaton noted that David had 'a lot of minor symptoms' but, other than a facial rash, David could not remember what these symptoms were.[400] As a result of this change in David's condition, Dr Seaton decided that treatment for HIV was more appropriate than treatment for Hepatitis C and he discussed this with David and his wife. In August 2002 David's CD4 count had risen to 319 cells/mm3. He had seborrhoeic dermatitis. Dr Seaton remained concerned that, despite this increase in David's CD4 count, starting treatment for Hepatitis C would lead to further drops in his CD4 count. David and his wife agreed that he should start treatment for HIV on their return from holiday at the end of September 2002. David was prescribed Daktacort (hydrocortisone) cream for the dermatitis.[401]

5.195 In the following September David started treatment for HIV with Efavirenz (an NNRTI), and Combivir (a combination of Zidovudine and Lamivudine, both NNRTIs). David took the Efavirenz at night time and the Combivir twice a day, one tablet in the morning and one at night time. David tolerated the treatment very well. Initially, he noticed some vivid dreams as a result of Efavirenz. He also experienced some episodes of dizziness if he got out of bed during the night.[402]

5.196 In January 2003 David's viral load of HIV had dropped to below 50 copies/ml, compared to 77,000 copies/ml in October 2002.[403] His CD4 count was 392 cells/mm3. He continued to tolerate the treatment well. He asked to defer starting treatment for Hepatitis C for a further three to six months. In October, despite excellent compliance with the medication, David's viral load increased briefly to 330 copies/ml. It then returned to below 50 copies/ml.

David's treatment for Hepatitis C

5.197 In January 2004 David started treatment for Hepatitis C. He was prescribed Pegylated Interferon and Ribavirin which he took in addition to the Efavirenz and Combivir. David found the side-effects of the treatment for Hepatitis C 'draining'.[404] In March 2004, Dr Seaton noted that David was suffering 'substantial symptoms' from the treatment. He suffered flu-like symptoms over the weekend, having taken the injection of Interferon on the Friday of each week. He deliberately took the injection on a Friday so that he could recover over the weekend and be able to work the following Monday. In the first six weeks of treatment his haemoglobin dropped by four grams; a very significant drop. He attended the ward each week for treatment with an injection of Erythropoietin (a hormone that controls red blood cell production).[405] David suffered from exhaustion, depression, nausea, loss of appetite, weight loss and fatigue. He felt like he had flu for a year. To his credit, David managed to keep working for the first eight months of this treatment, but had to stop during the last four months of his treatment due to the side-effects. In January 2005, David's GP wrote that he was full of admiration for David having persevered at work for as long as he had. David stated that the treatment is 'not something I ever wish to have to repeat'.[406] While taking this treatment, David was concerned about the effect it would have on the HIV virus. As the treatment affected him so badly, he thought that it could well be affecting the HIV virus. In fact, David sustained a good CD4 count throughout the treatment.[407]

5.198 Two months after starting treatment with Pegylated Interferon and Ribavirin, David's liver function test results started to improve. This improvement encouraged David to keep taking the treatment despite the side-effects. When he finished this treatment he was told that the Hepatitis C virus was undetectable. David was told that if the virus remained undetectable for two years, he would be deemed to be cured of the Hepatitis C virus. He spent the next two years hoping that this would be the case. Two years after completing his treatment with Pegylated Interferon and Ribavirin, David remained Hepatitis C PCR negative and he was told that he was cured of the virus.[408]

5.199 In October 2008 David's antiretroviral therapy was changed from Combivir to Kivexa (a combination of Abacavir and Lamivudine). This change was to reduce the risk of therapy-related lipodystrophy (fat loss, often from the face) which had been found to be associated with Zidovudine.[409]

5.200 David had continued to attend regularly at his HIV clinic appointments. He has remained relatively asymptomatic, and has tolerated his antiretroviral treatment to date.[410]

Specific impacts of David's infection with HIV and Hepatitis C

5.201 David stated that his infection with HIV has 'hugely' impacted on his family life. He and his wife were unable to conceive children naturally. David's daughter is not yet aware of how she was conceived. This is something David and his wife will have to speak to her about when she has the maturity to understand it. Understandably, David is concerned about the impact this will have on his daughter and how she will react to this. David has asked the hospital, and the MacFarlane Trust, for advice on how and when to explain this to a child but he has been advised that there is no specific information tailored for children.[411]

5.202 David and his wife's attempts to have a second child failed. David's wife suffered a number of ectopic pregnancies and a miscarriage. They were advised by a doctor at the Assisted Conception Service that assisted conception itself increases the likelihood of ectopic pregnancies. Had David and his wife been able to follow the natural course of having a family, they would have done so, and hopefully they would have had more children. His wife might not have suffered these failed pregnancies or their physical and emotional consequences.[412]

5.203 When asked about the effect of being infected with HIV on him and his family David stated:

[I]t's just the huge uncertainty with regard to the future and it's something that, other than taking the medication, you really have no control over and you feel that there is a lack of empowerment there because it's not something I can control, as I say, other than taking the medication, and there is the anxiety every time you attend the appointments of: am I still stable; I feel - well, I don't feel any different but I'm aware that there could be a lead-in time before any symptoms start to show. For as long as I feel well, there is always the hope that treatments are continuing to evolve and ... the carrot out there, that one day they will find a cure for it.[413]

5.204 Since his diagnosis with HIV, David has only told a couple of friends about it. As a result he and his wife always have a 'feeling of holding back with family and friends'.[414] He stated that living with a secret like that is 'not a way you would choose to lead your life'.[415]

5.205 David and his wife would be wary about moving away from the area where they live because they have such good support there. It has helped them to have their family close by. David has found the Brownlee Centre at the Gartnavel Hospital in Glasgow, where he is now treated, to be excellent and he has built up a trust with the people there. He is sure that other centres will also be very capable but he is more comfortable dealing with the people he knows. 'I have got to know them and they have got to know me'. This inability to move has affected David's employment prospects. There are more job opportunities in England in the industry in which David works, and it will take longer for him to find suitable employment in Scotland.[416]

5.206 David has not lost any earnings as a result of his infection with HIV and Hepatitis C. David and his wife funded two attempts at donor insemination, but their daughter's conception was funded by the NHS. Their attempts to have a second child were funded by a combination of David and his wife, the NHS and the MacFarlane Trust. Since 2007 David has received a monthly payment from the MacFarlane Trust. David and his wife have a mortgage, but the life assurance for it is in his wife's name. David has never tried to obtain life assurance as he did not think that it would be an option for him. He is aware that the position with life assurance has altered over the years, and so it is something he may look at in the future. His pension has not been affected by having HIV and Hepatitis C. David stated that it has only been in the last three years that insurance companies have been willing to provide travel insurance to people with HIV. Even then, the insurance premiums are double what they would otherwise be.[417]

5.207 Dr Seaton provided a written report to the Inquiry. In it, he stated that he was of the view that David's infection with HIV and Hepatitis C had 'hugely affected and impacted on David's family life' as David had described in his witness statement.[418] He further stated:

[H]aving known David since 2000, I have been hugely impressed by his stoical nature, his resolve and his determination to live a fulfilling and normal family life despite the physical and psychological burden of haemophilia and the complicating infections and treatment.[419]


5.208 Elaine was 66 years old when she gave evidence to the Inquiry. She lives in Fife. Elaine's husband had Haemophilia A. He and Elaine were married in 1964.[420] They have a son.[421] Elaine's husband acquired HIV from his treatment with blood products and died from AIDS, aged 47 years, in 1992.[422] For the purposes of this chapter, Elaine's husband will be referred to as 'Brian'.

Brian's haemophilia and his treatment

5.209 Brian was the third of four brothers, all of whom had Haemophilia A. There was no family history of haemophilia. The only surviving brother, who was the youngest of the four, also provided a statement to the Inquiry.[423] One brother died, aged 21 years, as a result of a motorcycle accident in the 1960s. The other brother died of AIDS, aged about 52 years, having also been infected with HIV from blood products.[424]

5.210 Brian's haemophilia was classed as moderate to severe. Hardly a week went by when he did not need treatment for a bleed. The severity of his haemophilia, and the treatment he received for it, were very similar to that of his surviving brother. This brother's haemophilia is also classified as moderate.[425] As a child Brian was treated for bleeds mainly with bed rest, often in hospital. He was also treated with plaster casts. There were times when three of the brothers were being treated for bleeds, each in different hospitals in Edinburgh. Their parents would have to take a taxi to try to visit each of them for 10 minutes during visiting hours.[426] Brian's oldest brother was once in hospital for about six years due to a bleed.[427]

5.211 Unsurprisingly, due to the disruption caused by his treatment, Brian only managed to attend primary school for a few years. He was then home tutored with his youngest brother instead. He did not attend secondary school.[428] The fact that he was unable to go to school did not bother him. He told Elaine that he thought that he learned more in the hour or two with the tutor, than he would have learned in the classroom. Brian loved being in the fresh air and occasionally swimming. He liked animals.[429]

5.212 Elaine remembers that, at the time when she and her husband were married (in 1964), most of her husband's treatment for bleeds was bed rest. Sometimes he stayed in bed for four to six weeks. Due to the pain of the bleed, often Brian was unable to bear the weight of the blankets on the area where the bleed was, or even the vibration caused when someone walked across the room. He was provided with a wire cage to take the weight of the blankets. Most of Brian's bleeds were in his knees.[430]

5.213 In about 1969 Brian's brother received his first treatment with factor concentrate, and it is likely that Brian received this treatment around then too. Brian and his brother thought that this treatment was a miracle cure as it shortened the time a bleed lasted. Also, Brian could often sense when a bleed was starting. When this happened, he either rested, or obtained treatment with factor concentrate as quickly as possible to keep the bleed and its effects to a minimum.[431] As the factor concentrate worked so well, Brian started going to the hospital more often to receive treatment for a bleed.[432]

5.214 During the 1970s and the early 1980s Brian's treatment for bleeds consisted of a mixture of both cryoprecipitate and Factor VIII. He also received blood products when he underwent dental treatment. He was treated at the Royal Infirmary of Edinburgh (RIE). The amount of treatment he needed varied from year to year, but it was usually at least twice a month.[433] At some time Brian started home treatment. Elaine could not remember when this was but it seems likely it was around the early 1980s.[434] Brian was warned, in general terms, about the risk of a hepatitis virus.[435] Between 7 March and 19 August 1984, Brian was treated on 11 occasions with the HIV-infected batch number 0090 of Factor VIII.[436]

Brian's diagnosis with HIV

5.215 In the summer of 1984, Elaine went on a trip to Canada. While she was there she read an article in a newspaper about a person with haemophilia having contracted HIV as a result of receiving contaminated blood products. Elaine had already heard through the media about HIV, but this was the first time she had heard of a person with haemophilia contracting the virus. Elaine cut the article out of the newspaper and brought it home to show her husband. When he saw it on her return in July 1984, Brian 'completely dismissed it'. He told Elaine that that could not happen in Scotland as Scotland produced its own blood products. He was sure that the blood product, which the person described in the article had received, was commercial blood from either drug addicts or prisoners.[437] At this point, unknown to himself, Brian was already infected with HIV. He was later found to have been HIV-positive on 29 May 1984.[438]

5.216 In late 1984 Brian received word from the Haemophilia Society about practising safe sex. He and Elaine were unsure why they were being told about this, particularly as they had been married 20 years by then. Towards the end of 1984, Brian, by himself, attended a meeting of other haemophilia patients and Professor Ludlam at the RIE. He later told Elaine what had happened at the meeting 'word for word'. Elaine told the Inquiry that the doctors at the meeting were asked by those present if HIV could be transmitted through blood products. The doctors told everyone there not to worry. 'They were still maintaining that it was coming through the gay community. The doctors said 'We are only telling you about this virus but it won't affect you.' Brian stood up at the meeting and said, 'Of course it won't affect us. Scotland makes its own.' One of the doctors told him that they had been given 'not home grown stuff'. Brian was very angry when he heard this and told the doctors 'they had no business giving them stuff from abroad'. He asked the doctors why they had not been told about this. The doctors told them that Scotland was running low and they had to give the patients something.[439]

5.217 In December 1986 Brian arranged an appointment with the Haematology Department so that he, Elaine and their son could be tested for HIV. Elaine thought that he arranged the appointment as more and more information was coming out in the press, and from the Haemophilia Society, about people with haemophilia being infected with HIV. As a result, Brian became increasingly concerned about the virus. Elaine stated that her husband was not worried about himself, only about her and their son. At the appointment in December 1986 the doctor advised them that there was no need for their son to be tested, but Brian insisted that they were all tested. About a week or two later Brian returned alone for the results of the blood tests. The doctor told him that his family was 'okay'.[440] Brian took this to mean that that all their results were negative, but the doctor said to him 'You are not asking about yourself'. The doctor then told Brian that he was HIV-positive.

5.218 The doctor told Brian that the virus might not develop into AIDS.[441] When Brian returned home after being diagnosed with HIV, he was upset, but relieved for Elaine and their son. Neither Brian nor Elaine knew much about HIV. Elaine commented, 'We had no idea what we were in for'.[442]

5.219 Brian realised that the doctors had known that he was HIV-positive before he had asked to be tested for it. This made him angry; he realised that he could have transmitted the virus to Elaine while the doctors were aware that he had been infected. When Brian asked a doctor (Elaine was unsure who the doctor was) why he had not been told sooner that he was HIV-positive, he was told that Professor Ludlam did not like telling people that they were infected and patients would be told that they were HIV-positive only if they asked about it.[443]

5.220 After his diagnosis with HIV, Brian and Elaine continued to live life as before. Brian very rarely managed to work due to his haemophilia. He was classed as disabled and had a 'green card'. They lived in a small community which meant that most people knew him. He used to try to persuade potential employers that he was fit for work, but most employers were unwilling to employ someone with haemophilia. He sometimes managed to obtain labouring work which was not recommended. Elaine did not work either, but their son, who was still living at home at the time, did work.[444]

5.221 In the late 1980s Brian was referred by Professor Ludlam to Dr Alison Richardson, a Clinical Psychologist, for counselling in respect of his diagnosis with HIV. Initially he was reluctant to meet with her, but eventually he did so. He found his meetings with her helpful. She was able to tell Brian and Elaine what his symptoms of HIV might be. Until she did so, Elaine stated, 'we were just in the dark'.[445] At one point Brian spoke to Dr Richardson about suicide. Dr Richardson was very supportive to both him and Elaine and continued to see Elaine after her husband died.

5.222 In her evidence to the Inquiry, Dr Richardson stated that during the group counselling sessions of the patients with haemophilia and HIV, a number of topics were discussed. These included anger against the Blood Transfusion Service and Professor Ludlam, suicide, wills, funerals, loved ones watching them all the time for symptoms, being irritable with family, sexual anxieties and alcohol problems.[446] She stated these patients, 'were understandably very anxious about what was going to happen to them, and of course at that time it was very, very unclear what might happen'.[447]

5.223 Elaine is unsure what her husband was told about the risk of transmission of HIV. After he was diagnosed with HIV, they stopped having a sexual relationship. She tried to reassure him, but he was so 'paranoid and petrified of infecting [her] that [that] side of [their] marriage was over forever'.[448]

5.224 A further impact of Brian's diagnosis with HIV was that, for a period of about six months, he started to drink more. Before he did not drink much alcohol, having only a whisky or a stout if they went out at the weekend. Brian used to prefer being outside and being with his animals which Elaine thought stemmed from being ill so much.[449] After his diagnosis with HIV, Brian started drinking more whisky when they went out and then 'his personality changed altogether'.[450] He became very argumentative. Elaine and their son bore the brunt of this, and Elaine found it very difficult to cope with. She realised that the excessive drinking was her husband's way of coping with his diagnosis and the fear and frustration it caused him. She stated that it was terrible to see her husband's personality change in this way, and she repeatedly reminded herself that this was not her husband. Their son also suffered as a result of this. He was still living at home at the time. He tried to be understanding of his father, but he did not wish to see his mother or his father hurt.[451]

5.225 Brian and Elaine did not know how to tell people about his diagnosis with HIV, and they told very few. Brian told one good friend that he was HIV-positive. A couple of weeks later at New Year, Brian gave the friend's grandchild a kiss. The friend told Brian never to kiss his grandchild again. Brian was very distressed by this. Elaine stated that he 'completely broke down'.[452] Brian was also concerned for his son. He worried about how his girlfriend at the time would react. Brian did not want 'anything coming back on [his son]'.[453] They spoke to Dr Richardson about this; she told them that as they lived in a small community she did not know if that would work for them or against them. After the reaction of his friend, Brian did not want to tell anyone else that he was HIV-positive.

Brian's symptoms of HIV

5.226 The Inquiry tried to recover Brian's medical records to assist Elaine's evidence, but unfortunately NHS Lothian was unable to locate them.[454] Instead, it provided two pages of data stored on a historical database.[455] Elaine and Professor Ludlam were able to provide copies of some excerpts from Brian's medical records which assisted the Inquiry. It was explained to the Inquiry that the copy records provided by Professor Ludlam came from a separate filing system, in which blood treatment records at the RIE were maintained.[456]

5.227 Elaine stated that her husband's first symptoms of HIV were loss of appetite and weight-loss. She thought that he had these symptoms for a couple of years before he was diagnosed with the virus.[457] It is possible, having seen the limited medical records available for Brian, that he may have been found to have persistent generalised lymphadenopathy in August 1985.[458] Elaine remembered that his lymph nodes were checked. As this was before Brian discovered that he was HIV-positive, it seems likely that he was not told about this. In April 1989, Brian was prescribed 'irregular' Pentamidine, suggesting that he may also have suffered from some symptoms of pneumonia.

5.228 In June 1990 Brian developed PCP. He and Elaine were supposed to be going to Ireland to stay in a caravan owned by the Haemophilia Society, but Brian had to be admitted to hospital instead. Elaine remembers he had chest problems, such as breathlessness, and that he was quite 'chesty'.[459] Brian was treated in hospital and recovered from PCP. Elaine remembers that he was told that he was lucky to recover as, a few years before, HIV patients usually died soon after developing PCP. At this time Brian started treatment with Zidovudine and prophylactic treatment for PCP.[460] Elaine was unsure if he suffered from any side-effect of these medications.[461]

5.229 Despite this prophylactic treatment, Brian developed PCP again in January 1991. He was admitted to hospital for treatment. His dose of Zidovudine was increased and he was prescribed Pentamidine. Elaine stated that while her husband was in hospital the consultant haematologist treating Brian tested him for PCP, and told him that if the result was positive he had developed AIDS. At Brian's request this doctor agreed to tell him the result of the test that night. Elaine stated that her husband 'was in pieces'.[462] Instead of the same doctor returning with the result, a younger doctor came. This doctor told Brian that he had developed AIDS and walked out of the room. Brian was very upset to be told that he had AIDS by a doctor he did not know, and in what he considered to be such a callous manner. Later the consultant haematologist apologised to Brian for not having given him the result himself.[463]

5.230 After this, Brian's condition deteriorated, and 'his body started to give out'.[464] He became very tired. He developed a rash on his face. He suffered from diarrhoea.[465] In April 1991 he was diagnosed as having HIV-wasting. In July he developed oesophageal candidiasis (a fungal infection of the oesophagus). His treatment with Zidovudine was stopped in November 1991 due to cytopenia (a deficiency of cellular elements of the blood), a known side-effect of Zidovudine. His treatment with Zidovudine was restarted in December that year.[466]

5.231 Brian developed a lot of infections. He had to have a nasogastric tube inserted for feeding. Elaine became his carer, and did everything for him. Brian preferred only Elaine to care for him. He used to say, 'I don't need help, my wife will do it'.[467] Occasionally Brian's GP came out to visit him, and the local nurse came every Monday. Dr Richardson used to visit them and give them advice. Initially their home did not have a shower, and a bath-chair was installed so that Brian could have a bath. He needed Elaine's help with bathing, and once joked to her that he would die of pneumonia not HIV, due to the length of time she took helping him into the bath.[468]

5.232 Brian became good friends with a 30-year-old man with haemophilia who had acquired HIV, and who lived quite close to him. This friend died a couple of months before Brian, and Elaine said 'his death broke Brian's heart'.[469] In January 1992 Brian returned from a hospital appointment and broke down. He told Elaine that he had been told that he only had six weeks to live. In fact he had not been told this, but he was very upset about his friend's death. He had told the nurses at the hospital that he would die next, and that he had only about six weeks to live. The nurses told him that he had at least another year. Elaine reminded her husband that he had promised her that he would keep fighting. He replied, 'I'm not giving in ... I'm tired'.[470]

5.233 Brian died at home about five weeks later on 8 February 1992. Before his death, he asked Elaine that his body be kept in the house before it was cremated. When the undertaker came to the house, Elaine felt she had to tell him that her husband was HIV-positive. At that point the undertaker said that he was unable to prepare her husband's body himself, and that his body would need to be taken away. Their son and Brian's brother put Brian's body into a body-bag and it was taken out of the house. Elaine did not know where her husband had been taken. She wished to visit him but the undertaker would not tell her where he was. Elaine stated that 'to this day nobody has told me where my husband went to'.[471] She stated:

I always have felt, and always will feel, that I broke my promise to [my husband]. [He] never asked for much - just to be with his family - and they even took that away and put him in a strange place completely on his own. It was bad enough for him to die like that but to be treated like a leper and without any dignity, he certainly didn't deserve that.[472]

5.234 After Elaine gave evidence the Inquiry carried out some investigations to ascertain where her husband was taken after he died. The Inquiry found out the details and passed this information to Elaine.

5.235 Brian had asked the doctors not to put AIDS on his death certificate and so the cause of his death was listed as septicaemia, pneumonia, immunosuppression and haemophilia.

5.236 About a year after Brian's death, Elaine asked to be tested again for HIV before she was admitted to hospital for a minor operation. The result of this test was negative.[473] Elaine felt guilty that she was not HIV-positive, 'why did [he] have it and why did I escape?'.[474]

5.237 In late 2002 Elaine heard from the Haemophilia Society that haemophilia patients who were HIV-positive were very likely also to be infected with Hepatitis C. Elaine asked her GP to test her for Hepatitis C. The result of this test was negative. At a meeting with Professor Ludlam in January 2003, Elaine was told by him that her husband had also been infected from blood products with the virus that causes Hepatitis C. A blood test result, dated 13 January 1992, had confirmed that he was positive for the antibody to HCV. Elaine is sure that her husband did not know that he had been infected with Hepatitis C; if he had known he would have told her.[475] By mid-January 1992, Brian was a very sick man and he died less than a month later from a different infectious disease. His condition at that time may explain why Brian was not informed of the test result by those then treating him. At that meeting she expressed concern that she had been at risk of acquiring the virus from her husband, and no-one had warned her or advised her of the measures she could take to avoid infection. Professor Ludlam indicated that the risk of transmitting the virus through sexual contact was low.[476] Nevertheless, Elaine felt that she should have been informed in 1992 of her husband's hepatitis diagnosis as she might herself, by that time, or before, have contracted the virus from her husband. If she had done so, she would, without her knowledge, have suffered the effects of the virus until 2002 when she went to her GP for Hepatitis C testing in consequence of the information she had received from the Haemophilia Society.

5.238 Elaine has suffered from anxiety and depression since the 1980s. Following her husband's death, in March 1992 Elaine was diagnosed with reactive depression. This persisted and she was deemed unfit for work until at least 1998. During 1992, Elaine attended counselling but she did not wish to take medication. Since then Elaine has been seen by her GP on a fairly regular basis. On occasion she has been prescribed various different antidepressants which Elaine has taken for a while, and then discontinued. Elaine stated that she did not want to become dependent on pills, and so she tried to work through her mental health problems herself. In August 1998 Elaine was noted to be 'verging on panic attacks'. In 2000, Elaine was noted to be concerned that she was infected with Hepatitis C, but she was found to be negative for this. She was prescribed a further dose of antidepressant therapy in 2002, on the tenth anniversary of her husband's death, and has been prescribed such therapy intermittently since then. She was last prescribed antidepressant therapy in September 2009.[477]

5.239 Elaine stated that her son is 'a very deep person'.[478] She believes that he has been very affected by having to assist with putting his father into a body-bag. After his father died, he told Elaine that he was going to do what his father had asked of him before he died and marry his girlfriend. They married soon after. A year or so after Brian's death, her son's wife came to Elaine and told her that her son was not speaking to her. Elaine believed that her son's behaviour was due to his father's death. When her son heard that Elaine had made contact with the Inquiry, he advised her to 'forget it all'[479] but before she came to give evidence he offered her any help she needed.

5.240 In October 1990 Brian's GP told him that he should make a claim for Special Attendance Allowance. The GP told him that he would state on the appropriate form that he expected Brian to die within six months. It proved very difficult for Brian to be awarded this benefit, but finally, in August 1991, after Brian underwent a medical examination while he was an in-patient in hospital, he was awarded the higher rate for day and night care instead of the allowance awarded to those who are terminally ill. While Brian was alive he received money from the MacFarlane Trust. When he died, Elaine was paid £1000. She was also paid a widow's allowance of about £100 a month which she still receives.[480]


5.241 Mark was 41 years old when he gave evidence. Mark used to work as a cabinet maker. He was medically retired in 1997. Mark has Haemophilia A and contracted both HIV and Hepatitis C from blood products.[481]

Mark's diagnosis with haemophilia and his treatment

5.242 In 1970, when Mark was a baby, he fell and cut his lip. His lip continued to bleed and 10 days later he was admitted to the local hospital in England, where the family then lived. On examination Mark was very pale. Tests revealed that he had mild Haemophilia A. He was treated with blood, fresh frozen plasma and cryoprecipitate and discharged home after two days in hospital.[482]

5.243 In 1972, Mark and his family moved permanently to Scotland, and thereafter lived at various locations. Mark was treated with cryoprecipitate when he was two and a half years old when he bit his tongue, again when he was seven years old for a bleed in his right elbow secondary to trauma, when he was eight years old due to a bleed in his right knee and when he was nine years old due to a further bleed in his right knee.[483]

5.244 In 1979, Mark and his family moved to an address in the countryside. Mark was referred to a consultant haematologist at the Royal Infirmary of Edinburgh (RIE), in respect of his haemophilia. Further investigations at the RIE revealed that Mark's Factor VIII level was only 2.2% which meant that his haemophilia was, in fact, moderately severe. His mother's Factor VIII level was found to be 34% which meant that she was likely to be a carrier of haemophilia. It was noted that Mark's right knee was swollen with a small degree of fixed flexion. Mark's right knee became one of his target joints (a joint where there is regular bleeding).[484]

5.245 Mark received treatment for his haemophilia at his local hospital as it was too far for him to travel to Edinburgh on a regular basis. The amount of treatment Mark received increased substantially. He stated, 'Now that they knew what was wrong with me, it was not a case of just rest and relax, it was off to the hospital for assessment'.[485] Between 18 April and 5 June 1980 he was treated with cryoprecipitate on three separate occasions, each occasion involving treatment in the local hospital over a number of days. Mark's mother started administering his treatment herself.[486] Between 5 June and 4 August 1980 Mark was treated with cryoprecipitate on six separate occasions.[487] As well as attending his local hospital for treatment, Mark also attended the Haematology Department of the RIE every three months for review.[488]

5.246 In 1981 Mark's mother was taught how to administer Factor VIII. Mark was treated with Factor VIII at home when he had a bleed or after a severe bleed to prevent it recurring. In about 1983, when Mark was 14 years old, he began treating himself with Factor VIII. He stated that this did not make the treatment hurt any less, but concentrating on what he was doing served as a distraction. Mark and his mother used to keep detailed records of the treatment he took at home. These were handed back to the hospital. A record of treatment Mark took in 1984 showed that he was treated with the HIV-infected batch of Factor VIII numbered 0090 between 25 March and 27 April 1984.[489]

5.247 Mark's haemophilia had a significant effect on his childhood. Living in the country he enjoyed the outdoor life. He used to help his parents. He developed a bleed after cutting nettles with a small scythe, and chopping logs with a full-sized axe. He was advised by his local doctor that it was unwise for him to use such instruments, and so he had to stop these activities.[490] Mark did not enjoy primary school and it seems that his haemophilia was a major factor in this. He stated that after it was 'announced' that he had a bleeding disorder, the other children used to push or shove him and ask him why he was not bleeding.[491] In secondary school, he was singled out as being 'rather weak and feeble'.[492] He was not allowed to take part in games and used to have to go to the library instead. He stated 'for certainly the first year, there was an element of being pushed around and bullied'.[493] This stopped when Mark stood up for himself in a fight with another pupil. Mark missed a lot of school due to bleeds. Soon after starting secondary school, he developed further bleeds in his right knee. He spent a lot of time in hospital before his O-grade exams. His teachers told him that, as a result of this, he did not need to sit his prelims or the O-grades. Mark thought that he should sit the prelims and so he did. He 'failed everything quite spectacularly'.[494] After this, he worked harder and passed all his O-grade exams except one. He left school with six O-grades and one Higher grade. He believed that his exam results were also affected by teachers' strikes which happened around the time of some of his exams.[495]

5.248 In about 1983 or 1984, Mark watched a television programme with his family which talked about the spread of a 'horrific virus that was going to wipe out a quarter of the world's population', HIV.[496] The programme stated that the virus had infected drug users and homosexuals. It also mentioned that another category of people at risk was those who used blood products and those at the highest risk were people with haemophilia. On hearing this, Mark panicked and found himself unable to breathe properly. He had to leave the house.[497]

5.249 Mark continued to attend clinic appointments at the Haemophilia Centre at the RIE. He was accustomed to regularly giving blood samples at these appointments.[498] His mother accompanied Mark to these appointments until about 1986.[499] Mark and his parents were warned of the risk of infection from blood products, including the risk of HIV and the risk of NANB Hepatitis. It was emphasised to them that Mark was being treated with blood products 'from Edinburgh' and not commercial blood products. The fact that the treatment he was receiving was produced locally was emphasised to a high degree. He said that doctors always stressed that he was being treated with factor concentrate manufactured in Edinburgh, not with commercial factor of foreign origin, and that continuing to take local factor was the safest option and reduced the risks.[500] Mark and his parents felt reassured by this.[501] Mark described going down to England to stay with his grandparents and being given letters stating that he was only to be treated with local Factor VIII, which he could hand over in the event that he had to attend a hospital.[502] Mark did not know whether his parents went to the meeting about HIV infection held at the RIE in December 1984.[503]

5.250 After leaving school, despite being advised to find an office-based job, Mark started training in joinery and cabinet making. With help from a Government enterprise allowance scheme, he set up his own cabinet-making business. He continued to attend the Haemophilia Centre at the RIE for monitoring and treatment of his haemophilia.[504] Mark said that, after 1986, when he attended for his three-monthly clinic appointments the doctor would want to discuss his blood test results. It was either Professor Ludlam or Dr Dennis he saw at the clinic appointments.[505] He said that there would be discussions, often using technical terms such as red blood cells and white blood cells, which did not mean anything to him at his age.[506] He knew at the time that they were testing for things like HIV and hepatitis. He knew that there was a small risk of infection and assumed that the doctors would keep an eye on things to see if he had caught anything. He did not know about HIV infection in other patients.[507] He continued to rely on his doctors, upon whom he had relied for years, and assumed that they would tell him if there was anything amiss.[508] He would be asked whether he wanted to know the results of his tests and said that he would reply, 'Tell me if there's anything wrong.' The doctor would then close the file and say, 'See you in three months.'[509]

5.251 Before giving evidence, Mark had been made aware that Dr Bernadette Auger had noted in his RIE records for 20 March 1989 that he was: 'Aware we have been doing HIV tests - DOES NOT WANT TO KNOW THE RESULT.'[510] The latter part of this quote had a star in the margin next to it. The full note described his examination results, including observations of swelling in his left elbow and small nodes in both armpits, and continued:

I have told him that if he ever wants to discuss his HIV results, he can contact one of the doctors in the centre and arrange to see them at any time. I have advised him to assume that he is at risk of passing on HIV infection and therefore should use protection for intercourse and be especially careful with the disposal of needles and blood spillages.[511]

5.252 The note continued that he was referred to the Haemophilia Society for the most recent information concerning possible loans for house purchases, in which he was interested. Mark's response to the note in oral evidence was:

Well, yes. I knew I was being tested for HIV but I would have expected a doctor to have actually informed me if there is anything wrong. So when they say, "Do you want to know the results of your tests," I was expecting it to be a whole list of information that ... didn't really mean very much to me. So again, knowing that HIV was a risk, I would have automatically assumed, for the medical practitioners that I trusted and relied on, they would tell me if anything as monumentally wrong as being infected with HIV - I would be automatically informed.

So, as I say, my assumption is the blood test results would be red blood cells, white blood cells and the levels of what is in my blood, not a virus


The other thing ... about looking at buying a house. If I had any inkling of what was wrong with me, why would I be buying a house? So does that not indicate that I had no idea that anything was wrong with me? If I'm discussing the possibility of buying a house or a flat, if I was HIV positive, knowing that HIV in those days was classified as a fatal condition, that if you have HIV you will be dead in three or five years; if I suspected I had HIV, why on earth would I be looking at buying a flat or a house?[512]

2.253 Mark was told that there were other entries in the records to the same effect as Dr Auger's and was asked whether it was possible that the doctors had formed the impression that he did not want to know, although his own recollection was evidently different. Mark simply repeated his answer that when his doctors asked whether he wanted to know the results he invariably answered: 'Tell me if there is anything wrong'.[513]

5.254 Asked whether he thought, on the basis of Dr Auger's note, that the doctors and social workers at the hospital may have thought that he did not want to know the results of the test, Mark replied:

But why should I - should they not tell me? If something is seriously wrong with a patient, is it not their job as a trained practitioner to help and assist the patient? So if there is something wrong - if you went to see a GP and the doctor found you had cancer or something - "We won't tell him just now. We don't want to spoil the weekend." You wouldn't consider that fair, would you?

On that basis I would have assumed if they knew I was HIV positive but they deliberately did not tell me and as I have subsequently discovered, they didn't tell me but they were publishing it in the Lancet from 1985, I believe. So they are telling the rest of the world and the medical fraternity but they don't have the manners or conscience to tell the actual victim who is infected.[514]

5.255 In his statement, he said:

If at this time the doctor was trying to inform me that I had HIV I certainly did not appreciate what he was implying. It was discussed with me on more than one occasion about the risks of passing on HIV infection and to use protection for sexual intercourse. However, I took this to be more of general guidance of how things should be done.[515]

Mark's diagnosis with HIV

5.256 In January 1991, when Mark was 21 years old, he was told by Professor Ludlam that he had been infected with HIV. He described the disclosure in these terms:

I saw Dr Ludlam at a regular clinic appointment in 1991 when I would have been 21 years of age. I hadn't seen him for a while as it had been Dr Dennis I had been seeing. I was having regular bleeds in my right knee and joint damage. My knee and other bleeds were discussed at this appointment. There was an awkward pause and then Dr Ludlam said to me, "It has come to my attention that you were one of the few unfortunates to be infected with HIV. You have been infected for a number of years and you will be dead within a year." I was absolutely stunned. I was aware that there was a risk of contracting HIV but had been told that blood products from Ellens Glen [ie SNBTS products] were the safest you could get. The nurses at the haemophilia centre had said this and had also discussed safe sexual intercourse with me. Dr Ludlam informed me that I was entitled to an ex-gratia payment to help me through the last few months of my life. He said to qualify for this payment all I had to do was to sign here and here. There was no one else present at this meeting other than me and Dr Ludlam. After giving me this information he then said that the offer of the ex-gratia payment would be withdrawn unless I agreed to this in the immediate future and then I would get nothing. This was the Macfarlane Trust payment. He said if I signed the money would be in my bank account within a week. He said go out and enjoy yourself. I am now aware that Dr Ludlam shouldn't have given me such news without someone of my choice accompanying me and he also should have had someone present. I was not offered any counselling.[516]

5.257 In oral evidence, Mark agreed that his immediate reaction was just to 'get away':

I believe it was three lots of documents I had to sign and I believe I received counseling and there was other discussions. Again, you are in a stunned condition. Your world has just been smashed to pieces and I do remember wanting to be out of the hospital as soon as possible.[517]

5.258 Professor Ludlam's notes of this appointment were read to Mark. They commented that the hospital had 'at last managed to persuade (him) to come for review'. They noted:

I have told him of his HIV status. He had not really suspected that he might be positive and he was therefore quite taken aback. Does not wish to tell anyone at present. To see Mrs Brown today. Review one week.[518]

5.259 Mark's final comments in oral evidence returned to this event:

I suppose the thing that I remember is how my world was smashed into a million pieces from one sentence, when Ludlam told me what the situation was; that was my world effectively over, plus the fact that the outcome of being - you know, "You have been infected for a number of years, you will be dead within a few months" is a very difficult thing to live with and seems very harsh and unfair when you have worked very hard and made a lot of effort to achieve a lot of things that I was told I wouldn't be able to do.[519]

5.260 He thought that immediately after seeing Professor Ludlam he saw Mrs Geraldine Brown, the hospital social worker. He had met her on a number of occasions previously. Mark was asked whether he had seen Dr Alison Richardson. He thought that was later: she told him that she had been watching him on paper for thirteen years before they met and that there had been a lot of interest in his case.[520] Mark agreed to undergo further HIV tests. He then wanted to get away from the hospital as quickly as possible.[521] He cannot remember what he did directly after that appointment.[522]

5.261 Mark had obtained his medical records some seven years before giving oral evidence.[523] He said that he then discovered that he had been infected with HIV in 1984, although he was part of Professor Ludlam's 'AIDS study' from 1983. He referred to a positive HIV test report in his medical records dated 18 January 1988.[524] Mark added:

From information I have received I am number 15 in Professor Ludlam's selection. He has published articles in the Lancet in 1985 and defines myself and others as his 'unique group'.[525]

5.262 Due to the stigma surrounding HIV Mark told nobody, not even his parents, of his diagnosis for eight years: 'I effectively lived a lie'.[526] He stated:

In those days, the ... programmes on the television were gravestones falling down, and if you shake hands with somebody who is HIV positive, a quarter of the population will be dead.[527]

5.263 Mark stopped buying newspapers. He stopped socialising: 'I basically stopped doing things'.[528]

5.264 Professor Ludlam referred Mark to the Western General Hospital in Edinburgh for treatment of his HIV. Initially, Mark refused to attend as he did not see the point. He realised that he had been infected with the virus for a number of years. He assumed that the life expectancy of a person with HIV was three to five years and so he thought that he had only months to live.[529] He stated:

I do recall being sent information which I would put in the car, drive out into the middle of the countryside, read through everything I possibly could and then, the paranoia was to the extent that I would then shred it and burn it so there was no evidence. And it was the same when they suggested medication and again, would it cure it? No. So what's the point? And I refused everything.[530]

5.265 Mark carried on working as normal and spent 18 months of 'relaxation and leisure'.[531] He received £22,500 from the MacFarlane Trust and spent it on the biggest and fastest motorcycle he could find. He found this a good way to let off steam and 'rode it like a lunatic'.[532] One of his friends warned him that he would need to calm down or he would kill himself. Mark stated, 'I would have actually seen that more as a bonus than a minus because if I had died in a motorcycle accident, it may have turned out that no one would ever know what happened'.[533] He felt extremely stressed and also a mixture of frustration, anger and despair:

I carried on as though everything was perfectly all right until you shut the front door and then it's back to utter despair and the end of the world, and that went on for years.[534]

5.266 As he shared a flat with others and worked in a workshop with three other people, Mark was very reluctant to take any medication. He did not wish anybody to find out and ask him what the medication was for. The only medication Mark took was Septrin, which is the trade name for Co-trimoxazole, as prophylactic treatment for PCP. Mark suffered diarrhoea as a result of taking this medication. In about November 1993, Mark ran out of Septrin. His diarrhoea resolved and so he stopped taking it.[535]

5.267 In 1993, Mark was lodging with a couple in a small village. One evening there was a programme on television about people with haemophilia having AIDS. Mark did not watch it. Immediately after the programme finished the couple came to his room and told him what the programme had said. He described this as '[a] very awkward moment'.[536] Mark pointed out to them that the media were trying to horrify people, and that they should not believe everything they heard. He told them that the programme was mainly about people in England and that he had received blood products from Scotland which were considerably safer and meant that the number of people affected was fewer. This appeased one of them but the other said, 'You haven't answered the question: do you have AIDS?' Mark replied 'No, I don't have AIDS at the moment. I'll let you know if I do'.[537] At that point Mark did not know whether he had AIDS or not so, having been brought up not to lie, he considered he was not lying to them. A few years later he returned to visit the couple and the woman told him that a couple living down the road from her had AIDS. As a result of this she would not let their son play in the garden. Seeing how paranoid she was about HIV, Mark was very relieved that he did not tell them that he was HIV-positive. He is still friendly with this couple and they still do not know that he has HIV.[538]

5.268 Mark attended the Haemophilia Centre for review in December 1993. The records of that appointment state that Professor Ludlam's clinical assistant had a long discussion with Mark about Hepatitis C as he had been found to be antibody positive. They record that Mark was given an information leaflet on Hepatitis C and invited to attend the joint liver clinic run with a consultant hepatologist. Mark recalled discussions about different medical matters but he was unable to recall when they took place. He believed that the first time he was made aware that he had Hepatitis C was in 1997. At this appointment it was also noted that he was feeling 'very well at present, has a good appetite and no specific symptoms'.[539] Mark's GP was a family friend, and was also Mark's parents' GP. Mark was so concerned about confidentiality that, for a period, he stopped being registered with a GP.[540]

5.269 In June 1995 Professor Ludlam wrote a letter to the Benefits Agency advising it that, as a result of many bleeds into his right knee, Mark now had very pronounced arthritis. He stated that the progressive arthritis in Mark's knee was of sufficient severity that Mark was unable to continue with his work, and that the arthritis was permanent.[541] Despite this, Mark continued to work. The business became less lucrative as, over the years, customers started to haggle over the cost of his work. This resulted in Mark working longer hours, sometimes working nearly 18 hours a day.[542]

5.270 In November or December 1995 Mark developed a rash affecting his trunk and forearms. This was treated to good effect with Canesten cream (an antifungal treatment).[543]

5.271 On 9 December 1995, while machining wood, Mark severed the end of two of his fingers. The wife of a man who worked in a nearby workshop was a district nurse. She offered to assist Mark. She tried to examine Mark's hand but, due to his concern about the risks from his blood, Mark would not allow her to do so which caused her some offence. Mark was driven by the man to a local cottage hospital. He was then transferred by blue-light ambulance to another hospital where, under general anaesthetic, the ends of his middle and ring fingers on his left hand were amputated.[544]

5.272 In July 1996, Mark attended the Haemophilia Centre with a recurrence of the rash which he had at the end of the previous year. The rash was on both arms and on his left thigh. It presented as 3cm diameter circular patches with raised margin and clear centre. It was itchy. It was thought to be caused by a fungal infection. Mark was prescribed more Canesten cream.

5.273 Mark's financial situation remained difficult. His income from the business was low. In addition to this Mark received a monthly payment of £80 from the MacFarlane Trust as well as mobility allowance. Mark remained very concerned about the stigma surrounding HIV, and still did not confide his HIV status to any family or friends. He believed that if it was known where he lived that he was HIV-positive, he would be unable to continue to run his business or to stay there. For these reasons, Mark continued to be reluctant to register with a GP and did not wish to divulge his HIV status to the Benefits Agency. In July 1996 Mark discussed his feelings of social isolation with Geraldine Brown, the social worker at the Haemophilia Centre. In his discussions with Mrs Brown, Mark mentioned that he might like to meet other HIV-positive individuals. Despite Mrs Brown offering to put him in touch with Edinburgh-based support groups or individuals, Mark did not meet other HIV-infected people.[545]

Mark's diagnosis with Progressive Multifocal Leukoencephalopathy

5.274 About the beginning of July 1996 Mark suffered a rapid deterioration of his eyesight. He first noticed it when he struggled to read a tape measure at work. He went to an optician and had his eyes tested. He was advised that he needed very weak prescription spectacles but, due to the cost, Mark did not buy them. His eyesight continued to deteriorate and Mark found that he was unable to work. He could not see what he was doing. He had serious problems when riding his motorcycle as he found he could not see where he was going.[546] On 22 July, Mark attended the Haemophilia Centre as he was worried about these symptoms.[547] He was admitted for further investigation. He was found to have minor, superficial widespread lymphadenopathy. His CD4 count was 50 cells/mm3, having declined relatively slowly over the preceding 12 years. He was referred to a Consultant Ophthalmologist at the City Hospital in Edinburgh. This doctor confirmed that Mark had a reduction in visual acuity but there was no evidence of retinitis (a disease of the eye that leads to loss of vision and blindness). Mark underwent CT and MRI scans. The results of the MRI scan were suggestive of Progressive Multifocal Leukoencephalopathy (PML).[548] PML is a rare, and usually fatal, disorder of the brain which damages the material that covers and protects nerves in the white matter of the brain. It is a consequence of immune deficiency caused by HIV. There is no known cure for PML. The best therapy is the reversal of the immune-deficient state. In the case of HIV-associated PML, immediate treatment with HAART will benefit most patients.[549]

5.275 Mark underwent a lumbar puncture and samples were sent for virological studies 'including JC the virus PCR'.[550] He was very uncomfortable after this procedure. 'I think I was a horrible grey colour and in a fair amount of pain'.[551]

5.276 At the end of September 1996 Mark was told about his diagnosis with PML by two doctors and a nurse.[552] He still had not told anyone that he was HIV-positive and so he had no one with him at this time. He was told that PML was a fatal condition and that it was caused by HIV having detrimentally affected his immune system. He was informed that from the moment when the eyesight starts to fail, the condition gets dramatically worse. He stated that, initially, the doctors were rather vague but they told him that PML was very serious. Mark pressurised them into saying what was going to happen and their response was, 'It's not good, it's not good. You are very ill.'[553] Mark insisted that the doctors explain to him what was likely to happen. He was told that:

[M]y sight would go completely, so I would end up deaf, dumb, blind, incontinent and infirm. And the end result is ... it would only be my heart and lungs that would be working and it would be matter of whichever failed first. All this is likely to occur within three months and you are fairly well advanced already.[554]

5.277 On hearing this Mark 'wanted it all over'.[555] He stated:

[T]hey had been telling me for years that 'You are very ill, you are dying' .... Well get on with it. You know? I suppose that the anger, the frustration and the rage has faded away. You are now in such a medical mess that to die would have actually been pretty much a relief.[556]

5.278 Mark was offered treatment with antiretroviral triple therapy but he did not wish to take it due to the side-effects. He decided that he would rather have a good quality of life than extended survival with significant disability.[557]

5.279 Mark still did not want his parents to know that he had HIV, and that he had been diagnosed with PML. Obviously this caused the medical staff some concern. One of the social workers at the hospital asked Mark how his parents might feel if he died, and he had not warned them about his diagnosis. They both became 'really quite upset' during this discussion.[558]

5.280 Following his diagnosis with PML Mark was discharged home. On 19 December 1996, Mark attended the Haemophilia Centre. He was found to have expressive dysphasia (difficulty in putting words together to make meaning). The doctors were unsure when this had developed. Their initial concern was that Mark had experienced an intracranial bleed. Mark initially declined treatment with Factor VIII, but relented after about four hours. He was found to have further visual loss in his right eye. The following day Mark had more than 80% recovered from his expressive dysphasia. Due to the sudden deterioration in his condition and his subsequent recovery, Dr Grant, Consultant Neurologist, wondered if Mark had suffered from a seizure. Mark was prescribed Sodium Valproate, an anti-convulsant medication. Mark's CD4 count was still 50 cells/mm3. Mark eventually agreed to his parents being informed of his admission to hospital. Professor Ludlam insisted that they were told that he was hepatitis-positive. Mark agreed to Professor Ludlam speaking to them regarding the risk of contact with body fluids, suggesting that they should wear gloves if they were going to come into contact with Mark's body. In view of Mark's increasing disability, this was becoming more likely. Mark's parents were not told of his HIV status, in accordance with Mark's wishes. Mark was discharged from hospital on 23 December.[559]

5.281 Mark described one of his early seizures:

[I] remember one very horrific one, being woken up late at night, and it was a feeling of being squashed to the floor and I know I lost consciousness. The use of the right-hand side, the arm was then not controllable but I was having difficulty with it. It tended to go off and do its own thing, and in no time at all ... I was losing the use of it and shortly afterwards ... the right leg still worked but not very controllably but the right arm ended up completely floppy and useless.[560]

5.282 He also suffered from muscle spasms on the right-hand side, often without warning. His muscles would tighten from the right groin area, his right arm would straighten and then it would twitch uncontrollably. On several occasions he bit his tongue. Mark found these episodes frightening as he often knocked things over. Occasionally he punched himself.[561] He was unable to control the severe seizures, but he discovered that he could control the severity of some of them by bending over, and controlling his breathing.[562]

5.283 Mark stopped work and, in January 1997, he moved to a town where he was able to receive the support he needed. He was allocated a flat in supported accommodation, in the town. He found this very awkward. At this stage he could still walk although his sight had deteriorated, and he had lost some of the use of the right side of his body. The local social work team provided Mark with regular support and somebody used to visit Mark on Mondays, Wednesdays and Fridays.[563] Initially, Mark found it difficult to accept home help: 'I wanted to do things on my own. I didn't want other people telling me what to do and providing food that I didn't like and didn't want'. Mark also wore an alarm around his neck in case of emergencies.[564]

5.284 In early February 1997, Mark registered with a GP.[565] One of his support workers persuaded Mark to tell his parents about his diagnosis with HIV and PML. On 19 February Mark invited his parents and his sister to his flat and, after a meal, told them about his condition. Understandably, they were very upset and shocked. Mark gave the doctors at the hospital permission to discuss his condition with his parents and also stated that his parents could make decisions for him, if he was unable to do so. After hearing of Mark's diagnoses his father spoke to the doctors about Mark's condition. Mark continued to attend the Haemophilia Centre for weekly monitoring.[566]

5.285 Mark's parents became very involved in their son's care: his mother brought him meals and his father took him out for a meal and shopping. He received daily visits from his social worker.[567] At a clinic appointment on 26 February 1997, Mark was noted to be experiencing increasing problems with coordination and loss of power in his right arm and leg. The clinical assistant to Professor Ludlam noted that these problems had become 'considerably worse' since the previous week and that Mark was walking with a marked limp. He was almost unable to use his right arm as his coordination was poor. He had developed aching discomfort in his right shoulder. She considered that Mark was reaching the stage where he was unable to manage on his own at home. Mark told her that he wished to remain in his flat as long as possible, if necessary with 24-hour help.[568]

Mark's treatment for HIV

5.286 Mark continued to live at his flat with a comprehensive level of support. He often listened to talking books.[569] His condition remained stable. At an appointment on 9 April 1997, Mark discussed antiretroviral treatment for HIV with Professor Ludlam. Mark was given a prescription for Zidovudine and told Professor Ludlam that he would probably start this treatment after discussion with his parents. At his next appointment, on 16 April, Mark told the Registrar that he had not started the medication as he was concerned about the side-effects and did not like taking tablets. Mark also told him that his main concern was that people would know about his HIV status if they saw him taking the tablets. The Registrar discussed this with him and, after this appointment, Mark started taking Zidovudine. On 30 April, Mark was also prescribed Didanosine and he started taking this medication in addition to the Zidovudine.[570] In May, Professor Ludlam asked Dr Brettle, a Consultant at the Regional Infectious Diseases Unit, City Hospital in Edinburgh, to assist in the management of the treatment of Mark's HIV.[571] At Dr Brettle's suggestion Mark was prescribed Lamivudine (an NRTI) instead of Didanosine.[572] Mark stated that he suffered stomach upsets as a result of these medications but no more serious side-effects.[573]

5.287 In May 1997, Mark asked if it was possible for him to obtain an exercise bicycle at his flat. He was aware that the Haemophilia Society provided some bicycles to patients.[574] He was keen to improve his condition by exercise.[575] After starting medication, Mark noticed some improvement in his right arm. He started to get a small amount of movement in the arm.[576] This encouraged him to keep taking medication. At a review appointment at Dr Brettle's clinic on 13 May, Mark's main problems were noted to be poor eye sight, weakness of his right arm, limited mobility, poor memory and an itchy rash. At one point Mark was unable to hold a conversation due to poor memory and poor speech.[577] Mark was prescribed Ketoconazole (an antifungal drug) for his rash. In May 1997 Mark's CD4 count was 40 cells/mm3 and his viral load was 2000 copies/ml.[578]

5.288 At an appointment on 5 August 1997, Mark agreed to start taking PCP prophylaxis and was given a supply of Co-trimoxazole.[579] On 25 August Mark was reviewed by Dr Grant, a Consultant Neurologist, and underwent two further MRI scans.[580] These demonstrated findings consistent with arrested PML.[581] On 17 September, at a review appointment at the Haemophilia Centre, Mark was noted to be getting on 'remarkably well'. Mark remained reluctant to start his treatment with Co-trimoxazole and Dr Dennis tried to persuade him to do so. He continued to suffer from a slight tremor in his right arm. He still had considerable difficulty walking, but could manage unaided reasonably well. His vision was no better. Mark was able to do his own washing up and domestic cleaning. Mark's parents continued to visit him regularly.[582]

5.289 Mark's CD4 cell count from a sample taken in October 1997 was 17 cells/mm3. This was similar to the pre-antiretroviral treatment level. His viral load from a sample taken the previous month was 1700 copies/ml. Due to these test results, Mark's antiretroviral treatment was changed, in November 1997, to Didanosine, Stavudine and Nevirapine (an NNRTI). At that time Nevirapine was not yet licensed in the UK. It was available on a named patient basis.[583] Mark was warned that the main side-effect of Nevirapine was a rash. Due to the potential for increased bleeding from protease inhibitors, it was decided that it was preferable for Mark to avoid this type of drug. Towards the end of 1997 Mark was prescribed Dapsone (to prevent PCP) instead of Co-trimoxazole.[584]

5.290 In early January 1998, Mark stopped taking Dapsone due to experiencing loose stools.[585] Mark's liver function test results deteriorated as a result of his treatment with Nevirapine. In the middle of that month Mark was contacted by one of the Staff Grade Physicians and he was told to stop taking Nevirapine. On 26 January Mark was admitted to hospital having suffered a possible complex partial seizure. He suffered sudden onset expressive dysphasia. He became increasingly drowsy then slept. When he woke he vomited and developed a headache. His right sided weakness worsened. On admission to hospital Mark was examined and a repeat MRI scan was performed. This showed no evidence of his PML having spread. Mark was discharged from hospital the following day. Mark was prescribed Saquinavir (a protease inhibitor) instead of Nevirapine.[586]

5.291 The addition of Saquinavir to Mark's HIV treatment had a good effect. In March 1998 Mark's CD4 count had increased to 74 cells/mm3 and his viral load was lower than 400 copies/ml. In June Mark's dose of Didanosine was stopped as Mark had developed peripheral neuropathy (damage to the peripheral nervous system). The plan was that Mark be prescribed Abacavir (an NNRTI) instead.[587] Unfortunately Mark's liver function tests results remained grossly abnormal, his recent ALT being over 700. It was thought that the cause of this was the antiretroviral medication. Mark was told that it would not be safe for him to take Abacavir but that continuing with just two drugs was sub-optimal therapy. He was told that, from a liver point of view, it would be desirable to stop all medication and monitor his liver function. This ran the risk of Mark's PML progressing. Mark decided to stop the antiretroviral therapy and undergo liver function monitoring. He was told to contact the hospital immediately if there was any change in his neurological state, particularly relating to vision, speech, headaches or weakness.[588]

5.292 In July 1998 Mark developed a further rash affecting his arms, back and upper thighs. He was prescribed Zirtek (allergy relief medication) and Eumovate ointment (a topical corticosteroid) and referred to the Dermatology Department.[589] By the time Mark saw the dermatologist his rash had improved, although he showed evidence of scalp psoriasis. He was prescribed coal tar shampoo for this.[590]

5.293 When he was reviewed in September 1998, Mark's liver function tests had reverted to normal, but his HIV viral load had increased to 67,000 copies/ml. His CD4 count had dropped to 55 cells/mm3. It was decided that Mark should restart antiretroviral therapy and so he was prescribed Stavudine, Lamivudine (an NRTI) and Efavirenz (an NNRTI).[591]

5.294 After starting this treatment, Mark's liver function test results deteriorated and then stabilised. He continued to suffer from occasional partial seizures and from muscle spasms mainly in his upper limbs.[592] Towards the end of 1999 Mark was again prescribed Dapsone as PCP prophylaxis. He stopped taking this medication in early 2000 after experiencing numbness of his hands, mood swings and tiredness which he believed were attributable to that medication. He was then prescribed nebulised Pentamidine instead.[593] When he started taking this medication, he received it fortnightly. He suffered from nausea and intermittent diarrhoea. At the beginning of April 2000 he started taking it monthly. This improved the side-effects and he was able to continue taking it.[594]

Mark's symptoms and treatment during the period 2000 to 2006

5.295 In May, Mark developed thoracic shingles.[595] In the summer of that year he suffered from a spell of depression and saw Dr Alison Richardson, a Clinical Psychologist. In September he was noted to be feeling a little brighter, had gained weight and was getting out a little more.[596] In addition to his symptoms of HIV and PML, Mark also continued to suffer as a result of bleeds in his right knee. He received treatment for this in the form of intensive physiotherapy, traction and splints.[597]

5.296 In August 2001, Mark discussed treatment of his Hepatitis C with a doctor working with Dr Brettle. His liver function test results remained abnormal. His alphafetoprotein was normal (elevated or rising alphafetoprotein is a marker for the development of liver cancer). It was explained to Mark that his liver disease appeared to be stable; but that the only way to be sure that he was not developing cirrhosis was for him to undergo a liver biopsy. Mark did not want to be treated with Pegylated Interferon and Ribavirin and so he thought there was no point undergoing a laparoscopic liver biopsy. Monitoring of Mark's liver continued by way of blood tests, and regular abdominal ultrasounds.[598]

5.297 In about March 2002, Mark experienced a further episode of speech disorder, shaking of his upper limbs, altered consciousness and headaches.[599] This was investigated by an EEG and the results were suggestive of temporal lobe seizures. Mark was advised that, if these episodes became more frequent in the future, he might need anticonvulsant therapy but it was not thought necessary at that time.[600] In August 2002 Mark developed mild gynaecomastia (abnormal growth of the male breast tissue) which can be caused by antiretroviral therapy.[601] In the following November he developed aphthous mouth ulcers and was prescribed Corlan pellets.[602]

5.298 Mark continued to suffer from significant pain and disability as a result of the damage caused to his right knee by repeated bleeds. It was decided that he required a right knee replacement. Due to his HIV status, there was a greater risk of the site of the prosthetic knee becoming infected, and of such an infection being difficult to eradicate. Mark was warned that, in these circumstances, further surgery might be necessary and he could even become septicaemic and have a life-threatening systemic illness. There was also the risk of amputation if such an infection could not be eradicated. Despite these risks Mark was prepared to proceed with this surgery.[603] He was prescribed an additional antiretroviral medication, Tenofovir, in an attempt to reduce his viral load of HIV prior to the surgery.[604] On 29 January 2003 Mark underwent right knee replacement. He made good progress following this surgery although his altered gait following the knee surgery caused him to have bleeds in both his ankles. By the April he walked with the aid of a walking stick.[605]

5.299 Mark developed marked facial lipoatrophy (facial wasting).[606] He was upset about this and, in particular, the idea that it might stigmatise him as being HIV-positive. In April 2004, he was referred to a Consultant Plastic Surgeon to discuss the possibility of treatment by injection with an artificial filling agent.[607] Having consulted with the surgeon and weighed up the risks, which were increased due to his haemophilia, and the possible benefits of treatment, Mark decided against surgery:

I refused. What's the point? I can't see myself in a mirror. Who is going to be looking at you? .... I don't go out, I don't get about. The only people I'm seeing are friends, social workers and colleagues. So what's the point in having more medical procedures, as there is more risk?[608]

5.300 In July 2004 Mark's antiretroviral treatment was reviewed. At that time he continued to take Stavudine, Lamivudine, Efavirenz and Tenofovir. His CD4 count was 243 cells/mm3 and his viral load was 537 copies/ml. Resistance tests showed evidence of viral resistance to Lamivudine and Efavirenz so it was not possible to improve Mark's antiretroviral treatment without the introduction of a protease inhibitor or Fuzeon (an HIV fusion inhibitor, administered subcutaneously twice a day). Mark was not keen to change his medication.[609]

5.301 Mark continued to suffer from partial seizures, including brief 'absences' during which he would stare into space or repeat the word 'yes'.[610] In August 2005, Mark was prescribed Carbamazepine, an anticonvulsant. This was effective in controlling his seizures. Unfortunately, there was a potential interaction between Carbamazepine and Efavirenz and so the Carbamazepine was stopped and he was prescribed Levetiracetam, another anticonvulsant, instead.[611] Mark suffered side-effects from this new drug and so he reduced his dose of that medication himself. In October 2005, he suffered a worsening of his seizures and was admitted to hospital for a night for observation. He was discharged home with the advice to return to his previous dose of Levetiracetam.[612]

Mark's symptoms and treatment during the period 2006 to 2011

5.302 In 2005 Mark started attending the clinic of Professor Leen, a Consultant Physician at the Regional Infectious Diseases Unit at the Western General Hospital in Edinburgh. In early 2006, Mark and Professor Leen discussed changing Mark's drug treatment for HIV, and commencing treatment for Hepatitis C. Having discussed the question of treatment with other patients with haemophilia, Mark was reluctant to start treatment for Hepatitis C or to change his treatment for HIV. Professor Leen advised Mark that having his HIV better controlled would be beneficial for his Hepatitis C progression. It was agreed that Mark would consider treatment for Hepatitis C before his next review appointment.[613] In April 2006, Mark told Professor Leen that his main concerns were his increased spasms, his arthritis and his visual impairment. In addition, he told Professor Leen that, in light of the poor response rate of Genotype 1 of Hepatitis C to treatment, he did not want to impair his quality of life by trying treatment for Hepatitis C even for a short period. Mark asked Professor Leen instead to try to improve his quality of life by reducing the number of spasms and monitoring his visual changes. With regard to his treatment for HIV, Mark was aware that on his current treatment, the HIV virus was not fully suppressed. Professor Leen told him that there was ongoing viral replication and that he was likely to acquire new mutations in his HIV which might make future treatment more difficult. Despite this, Mark was not keen to change his HIV treatment. Professor Leen thought that Mark was 'just coping'. He planned to refer Mark back to Dr Grant due to the spasms he was having and to the Consultant Ophthalmologist for advice about his visual problems.[614] Mark subsequently saw Dr Grant in August 2006 who noted that Mark had a postural tremor in his right arm and some unsteadiness on his feet. He thought that Mark looked 'much better than I had seen him previously'.[615] He hoped that Mark would not be troubled further with spasms and neurological pain, and did not arrange any further review.

5.303 At a review appointment at the Haemophilia Centre on 24 October 2006, Mark complained of bleeding haemorrhoids which had been a problem for a few months. Dr Dennis referred him to Professor Dunlop, Professor of Coloproctology at the Western General Hospital in Edinburgh.[616] At the appointment Mark also expressed some frustration at his inability to undertake everyday tasks, such as shopping. Mark's social work support had been reduced over the years and, at that time: he received three hours per week from a social worker who was unable to drive.[617]

5.304 In November 2006, after discussions with Professor Leen, Mark agreed to change his treatment for HIV. He was prescribed a new combination of antiretroviral therapy, Etravirine (an NNRTI) and Kaletra (a combination of Lopinavir and Ritonavir, both protease inhibitors) with Truvada. Professor Leen was confident that these drugs would suppress Mark's HIV. Mark was warned about the risk of bleeding as a result of the protease inhibitors.[618] In December that year, Professor Leen noted that Mark seemed 'to have a new lease of life since starting his new medication'.[619] He had had no increased bleeding, and felt much less tired. In January 2007 Mark's HIV viral load was suppressed 'for the first time for a long time if ever'.[620] His CD4 cell count was 153 cells/mm3 but Professor Leen expected his cell count to rise as his HIV was suppressed.

5.305 Mark attended Professor Dunlop's clinic for investigation of his rectal bleeding, and initially Professor Dunlop was of the view that the bleeding was caused by an anal fissure. He prescribed Diltiazem cream (a cream used to relax the anal sphincter) for this, but the bleeding continued.[621] On 19 February 2007 Mark was admitted to the Colorectal Unit of the Western General Hospital, after attending the Haemophilia Unit, due to rectal bleeding and pain. The Haemophilia Unit had treated Mark with Factor VIII. Mark did not wish to remain in hospital and so, after being advised about the application of the cream, was discharged home.[622] A week or so later Mark was admitted to the Colorectal Unit for further investigations. These investigations revealed that Mark had T3 anal squamous cell carcinoma.[623] Squamous cell carcinoma is the second most common cancer of the skin, and T3 means that the tumour is over 5 cm in size. The risk of anal carcinoma is increased in HIV-infected patients.

5.306 Mark was referred to Dr McLean, a Consultant Clinical Oncologist at the Western General Hospital, for consideration of radiotherapy and chemotherapy. On 13 March, Mark saw Dr Horn, a Consultant Haematologist, at a review appointment. She noted that Mark might require increased prophylactic Factor VIII treatment to cope with his chemotherapy. She also noted that, due to his HIV status and his low CD4 cell count, he might be more susceptible to infection than most patients if he became myelosuppressed (suppression of the bone marrow activity) and neutropenic (abnormally low number of neutrophils, white blood cells) as a result of the chemotherapy treatment. She commented that there would need to be close liaison between Dr McLean, Professor Leen and herself during Mark's cancer treatment. She noted that Mark was continuing to struggle 'considerably' with practical aspects of his life as his partner was unwell, and was staying with him less frequently.[624] Many of his struggles related to his visual impairment, and he found situations like collecting his medication and dealing with his banking and mail difficult. Dr Horn was of the view that he needed support from a worker with experience of working with visually impaired individuals, particularly in light of his impending treatment. She liaised with Professor Leen about this and wrote to the community social worker on Mark's behalf. She advised Mark to cancel a holiday he had booked to Lanzarote on 27 March, in case he experienced rectal bleeding while abroad.

5.307 On 20 March 2007 Mark underwent a staging MRI and CT scan.[625] In April, when he was 37 years old, Mark started radiotherapy and chemotherapy treatment at the Western General Hospital in Edinburgh. Mark was classed as 'a very high risk patient' to have treatment-related complications, including opportunistic infections, due to his low CD4 cell count. These risks were explained to Mark.[626] He attended the hospital six days a week for this treatment. As a result of the treatment Mark lost all of his body hair, except on his head. During the last week of treatment he was in a great deal of pain. He was prescribed Oramorph (an oral solution containing Morphine) and other painkillers.[627] Mark stated that after the treatment he was given the all clear.[628] After this treatment Mark travelled on the back of a motorcycle around Europe with some friends.[629]

5.308 On 21 June 2007, four weeks after Mark had finished his radiotherapy and chemotherapy treatment, Dr Horn visited Mark at home. She wrote that she was pleased to see that he had tolerated the treatment very well.[630] She noted that one of Mark's main problems was reduced appetite and episodes of nausea. He had been prescribed Metoclopramide (a medication used to treat nausea) by the Oncology Unit, along with nutritional supplements.

5.309 In October that year, Mark attended an outpatient appointment with Professor Hayes, Professor of Hepatology at the RIE to discuss treatment for Hepatitis C. Professor Hayes conceded, in light of Mark's recent treatment for cancer, that the timing was not perfect for this discussion.[631] Mark proved himself to be very knowledgeable about the likelihood of the success of treatment. Professor Hayes was of the view that Mark was possibly at either a pre-cirrhotic or early cirrhotic stage, characterised by a slightly reduced platelet count, and a higher serum hyaluronic acid concentration.[632] As Mark had never undergone a liver biopsy, it was difficult to be more definite about whether he had cirrhosis or not.[633] He suggested that Mark continue with surveillance for hepatocellular carcinoma with six-monthly alphafetoprotein checks. He noted that Mark had previously had an endoscopy which had showed one column of grade two varices. He was being treated with Propranolol (a medicine used to treat a number of conditions, including varices).

5.310 On 8 January 2008, Mark attended an appointment at the Haemophilia Centre. At the previous appointment in December 2007 a small lymph node was palpable in Mark's neck. When he was re-examined at his appointment in January there was no longer lymphadenopathy palpable in his neck. Dr Horn noted that Mark was under some stress due to problems with neighbours; his sleeping pattern was abnormal, and he was experiencing waking early. She also noted that Mark was still struggling with his social circumstances. A Consultant Ophthalmologist had offered Mark an appointment at the Vision Support Centre. Unfortunately this appointment did not take place as he was diagnosed with anal cancer around the same time and his oncology appointment took precedence. Dr Horn planned to write to ask for the appointment to be rescheduled.[634]

5.311 About a year after Mark's diagnosis with anal cancer, he attended a review appointment with Professor Dunlop. Professor Dunlop found a lump and, after further investigation including surgery, Mark was advised that the anal cancer had recurred. He was told that the only treatment option was abdominoperineal resection (removal of the anus, the rectum and part of the sigmoid colon) with a permanent colostomy. Mark underwent this procedure on 13 August 2008. While he was an in-patient, an occupational health worker came to speak to him about the support he would need at home. The worker put on a mask, gown and gloves and stood at the far side of the room to speak to him.[635] Mark recovered very well from the surgery.[636] There was a concern that, due to Mark having undergone radiotherapy so recently, the wound would not heal properly and might remain open. However it healed well and Mark described the scars as 'impressive'.[637] There was concern about how Mark would cope with a colostomy in view of his visual impairment, but in fact he managed 'surprisingly well'.[638] In October 2008, Dr McLean noted that Mark 'really is a remarkable man, given all his adversities .... He really is quite inspirational'.[639]

5.312 Mark has continued to experience muscle spasms and episodes of tremor, particularly affecting his right side. This has exacerbated the pain he has experienced due to bleeds, and has affected his ability to inject himself with Factor VIII. In June 2010, Mark was referred back to Dr Grant for advice about the tremor and absence seizures.[640] Dr Grant noted that these worsened when Mark was anxious, and he suggested that Mark's doses of Propranolol and Levetiracetam be increased and, if that did not improve his symptoms, then he be prescribed Diazepam.[641] In the October, Mark's CD4 count was 219 cells/mm3 and his viral load was lower than 40 copies/ml.[642]

5.313 In December 2010, Mark complained of poor appetite and nausea. He wondered if there might be a psychological component to these symptoms as he associated eating with his colostomy bag filling up.[643] These symptoms subsequently improved.

5.314 With regard to treatment for Hepatitis C, Mark has continued to have regular discussions about this with Professor Leen and, occasionally, at his Haemophilia Clinic appointments, with Professor Hayes about this. A liver ultrasound in 2010 was 'satisfactory', with no evidence of any focal lesion.[644] Mark is aware of the new treatments which have been recently licensed, and are likely to benefit, in particular, those who have Genotype 1 of the virus.[645] It is unclear when Mark will be eligible for treatment with these new drugs.[646]

Specific impacts of Mark's infection with HIV

5.315 It is apparent that the impact of all Mark's symptoms and disabilities has made, and will continue to make, life extraordinarily difficult for him. He is registered blind, and although he does have some awareness of things moving on his left-hand side, he is unable to read or recognise people.[647] He has advanced arthritis in his knees, both ankles and both elbows as a result of bleeds. Sometimes he is wheelchair bound when a bleed occurs. Otherwise he walks with the support of a stick or crutches.[648] Mark has regained strength in his right arm but has little coordination of it.[649]

5.316 A very significant impact of Mark's symptoms of HIV in combination with his haemophilia is that Mark has needed, and will continue to need, support with day-to-day living. It was apparent from Mark's evidence that he has strived for his independence. He stated:

I have tried to live a lot of my life very independent and the lack of sight very much takes that away. I'm relying on other people for everything from shopping to transport and that has got to be one of the hardest things for me to deal with, you know, to take that deep breath and allow other people.[650]

5.317 In a letter to the City of Edinburgh, Health and Social Care Department dated 18 November 2009, Dr Horn wrote:

[Mark] has coped extremely well over the years with the many difficulties that have faced him. Although he has support from a number of agencies, this is not proving sufficient to meet his very unique needs at present and there is also a lack of continuity of care for [Mark], which is having a major impact on his ability to cope with life.

He is also becoming increasingly socially isolated as a result of difficulties taking part, without support, in the activities that he enjoys.[651]

5.318 Giving some insight into the type of support which Mark needs, she wrote:

[T]here seems to be a lack of continuity and there have been several instances of [Mark] not realising the timing of important appointments and missing them because he cannot read his appointment cards/letters. He is also struggling with his medication, which is very complex and although he has managed this very well over the years he feels and I agree, that he is requiring more help with this. The counsellors who have been provided to give him psychological support are increasingly inappropriately involved in doing practical tasks for him. He has difficulty with shopping and sometimes difficulty with meal preparation. His condition means that he is vulnerable to losing weight if his nutritional in-take is inadequate and he is currently having ready meals or snacks prepared for him intermittently when possible. He has lost his confidence in going out alone and is struggling with issues such as his banking. The district nurses provide support for his stoma and he is able to do some of the stoma care himself. However there are aspects of his stoma care that he cannot manage on his own and he is currently sometimes relying on his parents for this.[652]

5.319 Like others needing support at home, Mark has had to cope with changes in the care he receives, and has had to argue for more support. This has taken its toll on Mark. In 2009, he was seen by a Consultant Clinical Psychologist from the Edinburgh Cancer Centre at the Western General Hospital. This psychologist believed that the low mood that Mark was experiencing at the time was 'directly related to his frustrations and anger regarding the level of social support and nursing care that he is receiving'.[653] She wrote:

I have the impression that he has tried on many occasions in the past to be able to effect some change, but has had little success. [Mark] has always been a man who has prided himself with being effective and competent and it is particularly difficult for him to manage his multiple health conditions while having less security in the quality of the care that is being offered to him. Although I would describe [Mark] as experiencing a moderate level of depression at present, I am concerned that his low mood may well escalate should these difficulties in his care not be resolved.[654]

5.320 Now Mark has home-help support every day of the week which, he stated, 'certainly makes a difference'. He stated that he has 'a fair degree of determination to stay in [his] own house'.[655]

5.321 When asked how he spends his time, Mark stated that he has a talking computer. He has had parts of his home and garden adapted so that he is able to move around outside and go upstairs. One issue for him is that he needs to know where everything is so that he can move around safely. For example, if a home help puts a sharp knife in a different place, Mark is unable to see it and may injure himself as a result.[656]

5.322 Mark owns his home and has a mortgage for this arranged through the MacFarlane Trust. He has never applied for life insurance and has no pension. Mark obtained travel insurance after his chemotherapy and radiotherapy treatment. He stated that it was more expensive as he had undergone a serious medical procedure within 12 months. Mark has received both Skipton Fund payments and recently he has applied for the increased payment.[657]

5.323 Mark has some feelings of regret that he did not tell his parents sooner that he was HIV-positive: 'I feel I have let them down to some degree'.[658] He stated that it was awkward not telling them his diagnosis at the time. Like Mark, his father likes motorcycles too. Mark used to ride his motorcycle past their house but he did not stop and say hello because 'there was the possibility of conversation. You know, if he had asked me directly, I wouldn't have been able to deny it'.[659] He stated, on the other hand:

I think in the scheme of things it has probably helped my parents to some degree because they didn't know. I know the stress and concern would have been greatly increased over the years. Again, I think, if I had told them, they would have been very enthusiastic for me to start taking medication or antiretrovirals before I actually did, which in the scheme of things may not have been beneficial.[660]

5.324 Mark stated, 'My parents and sister have been a fantastic help to me'.[661]

5.325 When asked about the personal impact of his infection with HIV, Mark stated:

I suppose the thing that I remember is how my world was smashed into a million pieces from one sentence, when Ludlam told me what the situation was;.... So again I suppose it's the same situation. I mean, I'm in my 40s. I did not expect to get this far. Again whether I have helped myself by refusing medication and letting my body get on with things, it's difficult to say. The biggest problem I have at the moment again is my sight ... But it has - very much brought out who my proper friends are and who is on my side.[662]

1 As detailed in Appendix 1, in order to preserve the witnesses' anonymity, each witness was given a pseudonym.

2 Professor Leen's report [PEN.012.1044]

3 Day 28, page 3

4 Her evidence in relation to the latter is narrated in Chapter 6, An Examination of the Effects of Infection with Hepatitis C on the Patients and their Families, including Treatment, paragraphs 6.361-6.371

5 Day 28, page 15

6 Ibid, pages 6 and 9

7 Ibid, page 5-7

8 Ibid, pages 9-11

9 Ibid, page 12

10 Ibid, pages 11-14

11 Ibid, page 16

12 Ibid, page 20

13 Ibid, pages 21-23; Christine's Witness Statement; a 'breakthrough bleed' happens when bleeding occurs despite prophylaxis treatment.

14 Day 28, page 24

15 Ibid, Page 23

16 Ibid, page 17

17 Christine's Witness Statement

18 Day 28, page 18

19 Ibid, page 22

20 Christine's Witness Statement

21 Ibid

22 Day 38, pages 135-136

23 Ibid, pages 38-39

24 Ibid, pages 39-43

25 Christine's Witness Statement; Day 28, pages 44-45

26 Ibid, page 44

27 Christine's Witness Statement

28 Day 28, page 45

29 Ibid, pages 45-46

30 Ibid, pages 46-48

31 Christine's Witness Statement

32 Day 28, page 50; Christine's Witness Statement

33 Day 28, pages 49-50

34 Ibid, pages 51-52

41 Day 32, pages 27-28

42 Day 38, page 131

43 Ibid, pages 131-132

44 Ibid, page 134

45 Day 28, pages 67-68

46 Ibid, page 52

47 Ibid, page 115

48 Ibid, pages 53-56; Excerpts from medical records recovered in respect of John

49 Day 28, page 57; Excerpts from medical records recovered in respect of John

50 Day 28, page 58; Excerpts from medical records recovered in respect of John

51 Day 28, page 59; Excerpts from medical records recovered in respect of John

52 Day 28, pages 60-61; Excerpts from medical records recovered in respect of John

53 Day 28, page 61; Excerpts from medical records recovered in respect of John; The ratio of T4 cells ('helper' cells also known as CD4 cells) to T8 cells ('suppressor' cells also known as CD8 cells) provided a measure of the effectiveness of the immune system.

54 Day 28, pages 61-62; Excerpts from medical records recovered in respect of John

55 Day 28, page 63

56 Christine's Witness Statement; Day 28, pages 63-64

57 Day 38, pages 142-143

58 Day 28, page 64

59 Ibid, page 65

60 Ibid, page 112

61 Ibid, page 65

62 Ibid, page 66

63 Ibid, page 70

64 Ibid, page 65

65 Ibid, page 67

66 Ibid, page 69

67 Co-trimoxazole was used by clinicians to treat patients with PCP before HIV was identified, Professor Leen - Day 33, page 38. After PCP was diagnosed in the first patients with AIDS in the early 1980s, Co-trimoxazole was prescribed for patients with HIV as a prophylactic treatment, Professor Leen - Day 33, page 34

68 Day 28, pages 70-71

69 Ibid, page 73; Excerpts from medical records recovered in respect of John

70 Professor Leen - Day 33, pages 35-36

71 Symptoms included Kaposi's sarcoma, HCV-related comorbidity, Hepatitis B and Hepatitis C: British HIV Association guidelines for the treatment of HIV-1-infected adults with antiretroviral therapy 2008 [PEN.012.1130] at 1136

72 Day 28, pages 74-75

73 Ibid, page 75

74 Ibid, page 75; Excerpts from medical records recovered in respect of John; Chapter 8, Knowledge of HIV/AIDS Now, para 8.37

75 Day 28, pages 76-77

76 Professor Leen - Day 33, pages 62-63

77 Ibid, pages 23-24

78 Day 28, page 77; Excerpts from medical records recovered in respect of John

79 Day 28, pages 78-79

80 Ibid, pages 79-80

81 Ibid, page 80; Excerpts from medical records recovered in respect of John

82 Dapsone was a second-line treatment for PCP

83 A blood test dated 15 June 1990 confirmed that John was positive for the antibody to the Hepatitis C virus

84 Day 28, page 18

85 Ibid, page 81; Excerpts from medical records recovered in respect of John

86 Day 28, pages 82-83; Excerpts from medical records recovered in respect of John

87 Day 28, page 84; Excerpts from medical records recovered in respect of John

88 Ibid

89 Day 28, page 85

90 Ibid, page 85; Excerpts from medical records recovered in respect of John

91 Excerpts from medical records recovered in respect of John

92 Day 28, pages 87-88; Excerpts from medical records recovered in respect of John

93 Day 28, pages 86-87; Excerpts from medical records recovered in respect of John

94 Day 28, page 87; Excerpts from medical records recovered in respect of John

95 Day 28, pages 88-89; Excerpts from medical records recovered in respect of John

96 Day 28, page 73

97 See Chapter 8, Knowledge of HIV/AIDS Now, para 8.41 for information about Zalcitabine and other drugs used to treat HIV

98 Day 28, page 89; Excerpts from medical records recovered in respect of John; the use of drugs being released on a compassionate basis may also be referred to as 'on a named patient basis'. 'Named patient basis' meant that, if a clinician considered that a patient would benefit from a medication prior to it being licensed, the clinician could request access to the medication for this patient from the manufacturers.

99 Day 28, pages 92-93; Excerpts from medical records recovered in respect of John

100 Day 28, page 91

101 Ibid, page 91

102 Ibid, pages 94-95; Excerpts from medical records recovered in respect of John

103 Day 28, page 82

104 Ibid, page 62

105 Ibid, pages 95-96

106 Ibid, page 97; Excerpts from medical records recovered in respect of John

107 Day 28, page 98; Excerpts from medical records recovered in respect of John

108 Day 28, pages 98-99

109 Ibid, page 99; Excerpts from medical records recovered in respect of John

110 Day 28, page 99; Excerpts from medical records recovered in respect of John

111 Day 28, page 100

112 Ibid, page 101

113 Ibid, pages 101-102

114 Ibid, page 102

115 Ibid, page 91

116 Ibid, page 92

117 Excerpts from medical records recovered in respect of John

118 Post mortem report for John

119 Day 28, pages 102-103; Excerpts from medical records recovered in respect of John

120 Day 28, pages 103-104

121 Ibid, page 105

122 Post mortem report for John

123 Christine's Witness Statement

124 Ibid

125 Ibid

126 Day 28, page 116

127 Ibid, pages 116-117; Christine's witness statement

128 Day 28, pages 117-118; Christine's witness statement

129 Day 28, pages 118-119; Christine's witness statement

130 Day 28, pages 106-107; Christine's witness statement

131 Day 28, pages 110-111

132 Day 29, pages 6-7; Excerpts from medical records recovered in respect of Luke; the Apgar test is a test to measure the vital signs of a baby at birth. Out of a potential score of 10, 7-10 is a normal score.

133 Day 29, page 10

134 Ibid, page 8

135 Ibid, page 9; Excerpts from medical records recovered in respect of Luke

136 The donor of the FFP which Luke had received was found to be infected when he subsequently donated blood again in 1986. Retrospective testing then showed that his previous donation was infected too. Excerpts from medical records recovered in respect of Luke; Day 29, pages 13-14

137 Amy's Witness Statement

138 Day 29, page 10

139 Ibid, pages 9-11

140 Ibid, page 12; Excerpts from medical records recovered in respect of Luke

141 Day 29, page 15

142 Ibid, page 16; Excerpts from medical records recovered in respect of Luke

143 Day 29, pages 15-16; Amy's Witness Statement

144 Day 29, page 15

145 Ibid, page 17

146 Ibid, pages 17-20; Amy's Witness Statement

147 Day 29, page 19

148 Ibid, page 20

149 Ibid, pages 20-21; Excerpts from medical records recovered in respect of Luke

150 Day 29, page 22

151 Excerpts from medical records recovered in respect of Luke

152 Day 29, pages 23-24; Excerpts from medical records recovered in respect of Luke

153 Day 29, pages 24-25; Excerpts from medical records recovered in respect of Luke

154 Day 29, page 26; Excerpts from medical records recovered in respect of Luke

155 Day 29, page 26; Amy's Witness Statement

156 Day 29, page 27; Excerpts from medical records recovered in respect of Luke

157 Day 29, pages 27-28; Excerpts from medical records recovered in respect of Luke

158 Day 29, page 29

159 Amy's Witness Statement

160 Day 29, page 29

161 Amy's Witness Statement

162 Day 29, pages 31-32

163 Excerpts from medical records recovered in respect of Luke

164 Professor Leen - Day 33, page 28 and his Report [PEN.012.1044] at 1050; Statement of Clinical Specialist Nurse

165 Day 29, page 35; Statement of Clinical Specialist Nurse

166 Day 29, pages 34-35; Statement of Clinical Specialist Nurse

167 Day 29, page 32

168 Ibid, page 33 and page 37; Statement of Clinical Specialist Nurse

169 Day 29, page 45

170 Ibid, page 45

171 Amy's Witness Statement

172 NRTI - Nucleoside Reverse Transcriptase Inhibitor, one of six classes of antiretroviral drugs now used to treat HIV. See Chapter 8, Knowledge of HIV/AIDS Now, para 8.35

173 Professor Leen's Report [PEN.012.1044] at 1055

174 Excerpts from medical records recovered in respect of Luke

175 Ibid

176 Day 29, pages 40-41; Excerpts from medical records recovered in respect of Luke

177 Day 29, page 42

178 Excerpts from medical records recovered in respect of Luke

179 HAART - Highly Active Anti-Retroviral Treatment. See Chapter 8, Knowledge of HIV/AIDS Now, paras 8.43-8.44, where this triple therapy is described

180 Professor Leen - Day 33, pages 40-41; and his Report [PEN.012.1044] at 1051 and 1052

181 Professor Leen - Day 33, page 45

182 Day 29, pages 43-44; Excerpts from medical records recovered in respect of Luke

183 Day 29, page 45; Excerpts from medical records recovered in respect of Luke

184 Day 29, page 46; Excerpts from medical records recovered in respect of Luke

185 Day 29, page 47

186 Ibid, page 48

187 Ibid, page 47

188 Ibid, page 55

189 Ibid, page 47; Excerpts from medical records recovered in respect of Luke

190 Day 29, page 44

191 Ibid, page 50

192 Professor Leen - Day 33, page 49

193 Day 29, page 48

194 Ibid, page 55

195 Ibid, pages 49-50; Excerpts from medical records recovered in respect of Luke

196 Excerpts from medical records recovered in respect of Luke

197 Day 29, page 51

198 Non-Nucleoside Reverse Transcriptase Inhibitor - the second class of antiretroviral drugs developed to combat HIV

199 Day 29, page 53

200 Excerpts from medical records recovered in respect of Luke

201 Day 29, pages 53-54; Excerpts from medical records recovered in respect of Luke

202 Day 29, page 54; Excerpts from medical records recovered in respect of Luke

203 Day 29, pages 54-55; Excerpts from medical records recovered in respect of Luke

204 Day 29, page 56; Excerpts from medical records recovered in respect of Luke

205 Amy's Witness statement; Excerpts from medical records recovered in respect of Luke

206 Excerpts from medical records recovered in respect of Luke

207 Ibid

208 Day 29, page 56; Excerpts from medical records recovered in respect of Luke

209 Excerpts from medical records recovered in respect of Luke

210 Day 29, page 56; Excerpts from medical records recovered in respect of Luke

211 Day 29, pages 57-58; Excerpts from medical records recovered in respect of Luke

212 Excerpts from medical records recovered in respect of Luke

213 Day 29, page 58; Excerpts from medical records recovered in respect of Luke

214 Day 29, pages 58-60; Excerpts from medical records recovered in respect of Luke

215 Day 29, page 60; Excerpts from medical records recovered in respect of Luke

216 Day 29, page 60

217 Day 29, pages 60-61; Excerpts from medical records recovered in respect of Luke

218 Day 29, pages 60-61; Excerpts from medical records recovered in respect of Luke

219 Day 29, pages 61-62; Excerpts from medical records recovered in respect of Luke

220 Day 29, page 62; Excerpts from medical records recovered in respect of Luke

221 Excerpts from medical records recovered in respect of Luke

222 Ibid

223 Ibid

224 Professor Leen - Day 33, pages 64-65

225 Day 29, page 63; Excerpts from medical records recovered in respect of Luke

226 Day 29, page 64; Excerpts from medical records recovered in respect of Luke

227 Day 29, page 65; Excerpts from medical records recovered in respect of Luke

228 Ibid

229 Day 29, pages 65-66

230 Ibid, page 67

231 Ibid, page 67

232 Amy's Witness Statement

233 Day 29, page 68

234 Day 30, pages 3-4

235 Ibid, page 11; Frances' Witness Statement

236 Day 30, pages 6-7 and page 9; Excerpts from medical records recovered in respect of James

237 Day 30, pages 4-5

238 Ibid, pages 7-8

239 Ibid, page 4

240 Ibid, pages 8-10; Excerpts from medical records recovered in respect of James

241 Day 30, pages 11-12; Excerpts from medical records recovered in respect of James

242 Day 30, pages 11-15; Excerpts from medical records recovered in respect of James

243 Day 30, pages 18-19

244 Ibid, page 19

245 Excerpts from medical records recovered in respect of James

246 Day 30, page 21

247 Excerpts from medical records recovered in respect of James

248 Day 30, pages 16-17; Frances' Witness Statement

249 Day 30, pages 20-22; Excerpts from medical records recovered in respect of James

250 Day 30, page 23

251 Excerpts from medical records recovered in respect of James; James was a member of the 'Edinburgh Cohort' - See Chapter 10, Knowledge of the Geographical Spread and Prevalence of HIV/AIDS 2, paras 10.16 onwards

252 Day 30, page 23

253 Ibid, page 22; Frances' Witness Statement

254 Day 30, page 27

255 Frances' Witness Statement

256 Day 30, pages 23 and 27

257 Ibid, page 29; Excerpts from medical records recovered in respect of James

258 Frances' Witness Statement

259 Day 30, page 28

260 Ibid, page 32

261 Ibid, page 32

262 Ibid, pages 33-34

263 Ibid, page 34

264 Ibid, page 34; Frances' Witness Statement

265 Day 30, page 34

266 Ibid, page 35

267 Ibid, pages 36-37; Excerpts from medical records recovered in respect of James

268 Day 30, page 37; Excerpts from medical records recovered in respect of James

269 Day 30, pages 37-38; Excerpts from medical records recovered in respect of James

270 Excerpts from medical records recovered in respect of James

271 Ibid

272 Day 30, page 38; Excerpts from medical records recovered in respect of James

273 Day 30, page 38

274 Day 30, page 39; Excerpts from medical records recovered in respect of James

275 Day 30, pages 40-41; Excerpts from medical records recovered in respect of James

276 Day 30, page 43; Excerpts from medical records recovered in respect of James

277 Day 30, pages 44-45; Excerpts from medical records recovered in respect of James

278 Day 30, pages 43-45; Excerpts from medical records recovered in respect of James

279 Excerpts from medical records recovered in respect of James

280 An aphthous ulcer is also known as a canker sore. It is a type of mouth ulcer and presents as a painful open sore

281 Excerpts from medical records recovered in respect of James

282 Day 30, pages 46-47

283 Ibid, pages 47; Excerpts from medical records recovered in respect of James

284 Day 30, page 47

285 Ibid, pages 47-48; Excerpts from medical records recovered in respect of James

286 Excerpts from medical records recovered in respect of James

287 Ibid

288 Day 30, page 48; Excerpts from medical records recovered in respect of James

289 Day 30, pages 49-50; Excerpts from medical records recovered in respect of James

290 Excerpts from medical records recovered in respect of James

291 Day 30, pages 50-51

292 Ibid, page 51

293 Ibid, pages 51-52

294 Excerpts from medical records recovered in respect of James

295 Day 30, page 52; Excerpts from medical records recovered in respect of James

296 Excerpts from medical records recovered in respect of James

297 Ibid

298 Ibid

299 Ibid

300 Ibid

301 Ibid

302 Ibid

303 Ibid

304 Ibid. Didanosine was approved in 1991, but was available on a named patient basis in 1990

305 Excerpts from medical records recovered in respect of James

306 Day 30, page 53; Frances' Witness Statement

307 Surgical incision into the abdominal cavity

308 Excerpts from medical records recovered in respect of James

309 Day 30, pages 53 and 54

310 Frances' Witness Statement

311 Excerpts from medical records recovered in respect of James

312 Ibid

313 Day 30, page 55; Excerpts from medical records recovered in respect of James

314 Frances' Witness Statement

315 Ibid

316 Ibid

317 ibid

318 Day 30, pages 55-56

319 Frances' Witness Statement

320 Ibid

321 Day 30, pages 56-57; Frances' Witness statement

322 Frances' Witness Statement

323 Day 30, page 57

324 Ibid, page 58

325 Ibid, pages 58-59

326 Ibid, pages 59-60; Statement of Frances' youngest brother

327 Day 30, page 60; Statement of Frances' youngest brother

328 Ibid

329 Day 30, pages 60-61; Statement of Frances' youngest brother

330 Day 30, page 61; Statement of Frances' youngest brother

331 Day 30, page 62; Statement of Frances' GP

332 Day 30, pages 62-63; Statement of Frances' GP

333 Day 30, page 63

334 Ibid, pages 63-64

335 Ibid, pages 80-81

336 Ibid, pages 81-82

337 Ibid, pages 84-85; Excerpts from medical records recovered in respect of David

338 Day 30, page 85

339 Ibid, pages 85 and 88

340 Ibid, pages 89-90; Excerpts from medical records recovered in respect of David

341 Day 30, pages 90-91; Excerpts from medical records recovered in respect of David

342 Day 30, page 94; Excerpts from medical records recovered in respect of David

343 Day 30, pages 102-103

344 Excerpts from medical records recovered in respect of David

345 Day 30, pages 96-98

346 Ibid, page 104; Excerpts from medical records recovered in respect of David

347 Excerpts from medical records recovered in respect of David

348 David's witness statement

349 Day 30, pages 103-104 and 106

350 Ibid, page 114

351 David's witness statement. The manner in which David was told of his diagnosis with HIV, including Professor Lowe's comments on this, is discussed in more detail in Chapter 33, An Investigation into the Systems in Place for Informing the Patients about the Risks - HIV/AIDS, para 33.325

352 David's witness statement

353 Day 30, pages 108-109

354 Comments on David's witness statement made by Professor Lowe dated May 2011

355 Day 30, pages 118-119

356 Ibid, page 119

357 Ibid, page 114

358 Ibid, page 109

359 Ibid, pages 155-156

360 Day 30, page 114

361 Ibid, page 115

362 Ibid, page 112; Excerpts from medical records recovered in respect of David

363 Day 30, page 119

364 Ibid, pages 119-120

365 Ibid, page 120

366 David's Witness Statement

367 Day 30, page 111; Excerpts from medical records recovered in respect of David

368 Day 30, pages 120-121

369 Excerpts from medical records recovered in respect of David

370 Ibid

371 Ibid

372 Day 30, pages 121-122; Excerpts from medical records recovered in respect of David

373 Day 30, pages 122-123; Excerpts from medical records recovered in respect of David

374 Excerpts from medical records recovered in respect of David

375 Day 30, page 124

376 Ibid, pages 125-126; Excerpts from medical records recovered in respect of David

377 Day 30, pages 123-124; Excerpts from medical records recovered in respect of David

378 Day 30, page 125; Excerpts from medical records recovered in respect of David

379 Day 30, page 125

380 Ibid, pages 126-127; Excerpts from medical records recovered in respect of David

381 Excerpts from medical records recovered in respect of David

382 Day 30, pages 129-130

383 David's Witness Statement

384 Excerpts from medical records recovered in respect of David

385 Letter from David's consultant

386 Excerpts from medical records recovered in respect of David

387 Day 30, page 135; Excerpts from medical records recovered in respect of David

388 Day 30, page 136

389 Ibid, page 137

390 Ibid, page 130; Excerpts from medical records recovered in respect of David

391 Day 30, page 130

392 Ibid, page 128

393 Excerpts from medical records recovered in respect of David

394 David's Witness Statement

395 Day 30, page 131; Excerpts from medical records recovered in respect of David

396 Day 30, pages 132-133; Excerpts from medical records recovered in respect of David

397 Day 30, page 139; Excerpts from medical records recovered in respect of David

398 Excerpts from medical records recovered in respect of David

399 Day 30, page 140; Excerpts from medical records recovered in respect of David

400 Day 30, page 140; Excerpts from medical records recovered in respect of David

401 Day 30, page 141; Excerpts from medical records recovered in respect of David

402 Day 30, page 142; Excerpts from medical records recovered in respect of David

403 Day 30, page 143; Excerpts from medical records recovered in respect of David

404 Day 30, page 143

405 Excerpts from medical records recovered in respect of David

406 Day 30, page 144

407 Ibid, page 145

408 Ibid, pages 145-146

409 Day 30, page 147; Letter from David's consultant

410 Day 30, page 148

411 Ibid, pages 148-150

412 Ibid, pages 133-134; David's Witness Statement

413 Day 30, pages 152-153

414 Ibid, page 149

415 Ibid, page 150

416 Ibid, page 150 and 153-154

417 Ibid, pages 150-152

418 Ibid, page 148; Letter from David's consultant

419 Day 30, page 148; Letter from David's Consultant

420 Day 31, page 114

421 Ibid, page 141

422 Ibid, page 117

423 Statement of Elaine's brother in law

424 Day 31, page 118; Statement of Elaine's brother in law

425 Day 31, page 117

426 Ibid, pages 117-118

427 Ibid, page 121

428 Ibid, page 122; Elaine's Witness Statement

429 Day 31, page 125

430 Ibid, pages 119-120

431 Ibid, pages 123-124

432 Ibid, page 127

433 Ibid, pages 128-129

434 Ibid, page 130; Statement of Elaine's brother in law - Brian's older brother started home treatment in the late 1970s.

435 Day 31, page 20

436 Ibid, page 129; Excerpts from medical records recovered in respect of Elaine's husband; Thus Brian was a member of the 'Edinburgh Cohort' - See Chapter 10, Knowledge of the Geographical Spread and Prevalence of HIV/AIDS 2, paragraphs 10.16 onwards

437 Day 31, pages 132-134

438 Letter from Brian's consultant. Early kits that tested for antibodies to HIV became available on an experimental basis in October 1984, and Brian's blood sample given in May was retrospectively found to be positive.

439 Day 31, pages 134-137; Although this may have been Brian's understanding of what was said at the meeting, this was not what patients were told at this meeting. The details of this meeting are narrated in Chapter 33, An Investigation into the Systems in Place for Informing the Patients about the Risks - HIV/AIDS, paragraphs 33.221-33.252

440 Day 31, pages 138-142

441 Ibid, page 145

442 Ibid, page 146

443 Ibid, pages 145

444 Ibid, pages 146-148; Elaine's Witness Statement

445 Day 31, pages 148-149

446 Day 29, pages 9-11

447 Ibid, page 11

448 Day 31, page 150

449 Ibid, pages 150-151; Elaine's Witness Statement

450 Day 31, page 152

451 Ibid, pages 151-153

452 Ibid, page 164; Elaine's Witness Statement

453 Day 31, page 165

454 Letter from NHS Lothian to Central Legal Office dated 9 February 2001

455 Excerpts from data received from NHS Lothian in respect of Brian

456 Email from Central Legal Office to the Inquiry dated 7 June 2011

457 Day 31, page 153; Elaine's Witness Statement

458 Day 31, page 154; Excerpts from data received from NHS Lothian in respect of Brian

459 Day 31, pages 158-159; Elaine's Witness Statement

460 Day 31, page 158; Excerpts from data received from NHS Lothian in respect of Brian - the record does not disclose what prophylactic medication he was prescribed

461 Day 31, page 161

462 Elaine's Witness Statement

463 Day 31, pages 160-161

464 Elaine's Witness Statement

465 Day 31, page 161

466 Ibid, page 162; Excerpts from data received from NHS Lothian in respect of Brian

467 Day 31, pages 162-163

468 Ibid, pages 163-164

469 Ibid, pages 165-166

470 Ibid, pages 166-167

471 Ibid, pages 168-169;

472 Elaine's Witness Statement

473 Day 31, page 167

474 Ibid, page 170

475 Ibid, pages 171-172; Elaine's Witness Statement; Excerpts from data received from NHS Lothian in respect of Brian

476 Day 31, pages 172-173; Elaine's Witness Statement

477 Day 31, pages 170-173

478 Ibid, page 182

479 Ibid, pages 183-184

480 Ibid, pages 174-175; Elaine's Witness Statement

481 Day 32, pages 93-95

482 Day 32, pages 95-98; Excerpts from medical records recovered in respect of Mark

483 Day 32, pages 98-99; Excerpts from medical records recovered in respect of Mark

484 Day 32, pages 100-102; Excerpts from medical records recovered in respect of Mark

485 Day 32, page 103

486 Excerpts from medical records recovered in respect of Mark

487 Day 32, pages 101-102; Excerpts from medical records recovered in respect of Mark

488 Day 32, pages 103-104

489 Ibid, page 107; Excerpts from medical records recovered in respect of Mark; thus Mark was a member of the 'Edinburgh Cohort' - See Chapter 10, Knowledge of the Geographical Spread and Prevalence of HIV/AIDS 2, paragraphs 10.16 onwards

490 Day 32, pages 104-105; Excerpts from medical records recovered in respect of Mark

491 Day 32, page 110

492 Ibid, page 110

493 Ibid, page 110

494 Ibid, pages 111-112

495 Ibid, pages 112-113

496 Ibid, page 113

497 Ibid, pages 113-114

498 Ibid, page 128

499 Ibid, pages 114 and 116

500 Ibid, pages 107-108

501 Ibid, pages 107-109

502 Ibid, pages 108-109

503 See Chapter 33, An Investigation into the Systems in Place for Informing the Patients about the Risks - HIV/AIDS, paragraphs 33.221 onwards; Day 32, pages 115-116

504 Day 32, page 120

505 Mark's witness statement

506 Day 32, page 117

507 Ibid, pages 117-120

508 Ibid, page 117

509 This does not accord with the evidence of the doctors. It is discussed in more detail in paras 33.304-33.307 and 33.401-33.404 of Chapter 33, An Investigation into the Systems in Place for Informing the Patients about the Risks - HIV/AIDS; Mark's witness statement

510 Mark's witness statement; Excerpts from Mark's OP clinical notes

511 Excerpts from Mark's OP clinical notes

512 Day 32, pages 122-123

513 Ibid, page 122

514 Ibid, page 124

515 Mark's witness statement

516 Ibid

517 Day 32, page 126

518 Excerpts from Mark's OP clinical notes

519 Day 32, page 187

520 Ibid, pages 128-129

521 Ibid, pages 126-128

522 Ibid, page 133

523 Ibid, page 129

524 Excerpts from Mark's medical records

525 Mark's Witness Statement; Professor Ludlam's evidence in relation to this aspect of Mark's evidence is detailed in paragraphs 33.305-33.307 of Chapter 33, An Investigation into the Systems in Place for Informing the Patients about the Risks - HIV/AIDS; The issues raised by Mark's evidence are discussed in paragraphss 33.401-33.404

526 Ibid

527 Day 32, page 133

528 Ibid, page 133

529 Ibid, pages 133-134

530 Ibid, page 134

531 Ibid, page 135

532 Ibid, pages 134-135

533 Ibid, page 140

534 Ibid, page 135

535 Ibid, pages 136-137

536 Ibid, pages 137-138

537 Ibid, page 138

538 Ibid, page 139

539 Ibid, page 142; Excerpts from medical records recovered in respect of Mark

540 Day 32, pages 144-145; Excerpts from medical records recovered in respect of Mark

541 Excerpts from medical records recovered in respect of Mark

542 Day 32, page 151

543 Ibid, page 150; Excerpts from medical records recovered in respect of Mark

544 Day 32, pages 146-150

545 Ibid, pages 155-157

546 Ibid, pages 157-158

547 Excerpts from medical records recovered in respect of Mark

548 Day 32, pages 159-160; Excerpts from medical records recovered in respect of Mark

549 Professor Leen - Day 33, page 49

550 Excerpts from medical records recovered in respect of Mark

551 Day 32, page 163

552 Excerpts from medical records recovered in respect of Mark

553 Day 32, pages 164-165

554 Ibid, pages 161-162

555 Ibid, page 164

556 Ibid, page 164

557 Ibid, pages 163-164; Excerpts from medical records recovered in respect of Mark

558 Day 32, page 165

559 Ibid, pages 167-169; Excerpts from medical records recovered in respect of Mark

560 Day 32, page 167

561 Excerpts from medical records recovered in respect of Mark

562 Day 32, page 168

563 Ibid, pages 170-171; Excerpts from medical records recovered in respect of Mark

564 Day 32, pages 171-172

565 Ibid, page 171

566 Ibid, pages 172-173; Mark's Witness Statement

567 Day 32, page 173; Mark's Witness Statement; Excerpts from medical records recovered in respect of Mark

568 Excerpts from medical records recovered in respect of Mark

569 Ibid

570 Day 32, page 174; Excerpts from medical records recovered in respect of Mark

571 Excerpts from medical records recovered in respect of Mark

572 Ibid

573 Day 32, page 174

574 Excerpts from medical records recovered in respect of Mark

575 Day 32, page 175

576 Ibid, page 174

577 Excerpts from medical records recovered in respect of Mark

578 Ibid

579 Ibid

580 Ibid

581 Ibid

582 Ibid

583 See footnote 98 above on the meaning of 'named patient basis'.

584 Day 32, page 175; Excerpts from medical records recovered in respect of Mark

585 Excerpts from medical records recovered in respect of Mark

586 Ibid

587 Ibid

588 Day 32, pages 176-177; Excerpts from medical records recovered in respect of Mark

589 Excerpts from medical records recovered in respect of Mark

590 Ibid

591 Ibid

592 Ibid

593 Day 32, page 178; Excerpts from medical records recovered in respect of Mark

594 Excerpts from medical records recovered in respect of Mark

595 Ibid

596 Ibid

597 Ibid

598 Ibid

599 Ibid

600 Ibid

601 Ibid; Gynaecomastia is also associated with Hepatitis C.

602 Excerpts from medical records recovered in respect of Mark

603 Ibid

604 Ibid

605 Ibid

606 See paragraph 8.40 of Chapter 8, Knowledge of HIV-AIDS Now.

607 Day 32, pages 179-180; Excerpts from medical records recovered in respect of Mark

608 Day 32, page 180

609 Excerpts from medical records recovered in respect of Mark

610 Ibid

611 Ibid

612 Ibid

613 Ibid

614 Ibid

615 Ibid

616 Ibid

617 Ibid

618 Ibid

619 Ibid

620 Ibid

621 Ibid

622 Ibid

623 Day 32, page 180; Excerpts from medical records recovered in respect of Mark

624 Excerpts from medical records recovered in respect of Mark

625 Ibid

626 Ibid

627 Day 32, pages 180-181

628 Ibid, page 181

629 Ibid, page 182

630 Excerpts from medical records recovered in respect of Mark

631 Ibid

632 'Serum hyaluronic acid' levels increase with the development of liver fibrosis in patients

633 The severity of the disease is assessed by the pathologist who, having had regard to the amount of inflammation and scar tissue, grades the liver biopsy samples as mild, moderate or severe. Liver biopsy is discussed in more detail in paragraphs 13.89-13.91 of Chapter 13, Knowledge of Viral Hepatitis Now.

634 Excerpts from medical records recovered in respect of Mark

635 Mark's Witness Statement

636 Day 32, page 181; Excerpts from medical records recovered in respect of Mark

637 Day 32, pages 181-182; Excerpts from medical records recovered in respect of Mark

638 Day 32, page 181

639 Excerpts from medical records recovered in respect of Mark

640 Ibid

641 Ibid

642 Ibid

643 Ibid

644 Ibid

645 These new treatments are discussed in more detail in Chapter 13, Knowledge of Viral Hepatitis Now, paragraph 13.115.

646 Excerpts from medical records recovered in respect of Mark

647 Day 32, page 95

648 Excerpts from medical records recovered in respect of Mark

649 Mark's Witness Statement

650 Day 32, page 187

651 Excerpts from medical records recovered in respect of Mark

652 Ibid

653 Ibid

654 Ibid

655 Day 32, Page 184

656 Ibid, Page 184

657 Ibid, page 185; Excerpts from medical records recovered in respect of Mark

658 Day 32, page 186

659 Ibid, Page 186

660 Ibid, Page 186

661 Mark's Witness Statement

662 Day 32, pages 187-188

6. An Examination of the Effects of Infection with Hepatitis C on the Patients and their Families, including Treatment >