THE EXPERIENCES OF PATIENTS AND THEIR FAMILIES
Monday 27 March 2017
THE EXPERIENCES OF PATIENTS AND THEIR FAMILIES
4.01 As was indicated in the Introduction to this report, the work of the Inquiry will include assessing all of the relevant evidence collected for veracity and reliability, with a view to seeking an objectively true and acceptable account of the material facts. That will happen after all of the evidence has been considered. In the first phase of the investigation the Inquiry has been keen to hear from those patients and their families who had personal experience of infection through blood and blood products with Hepatitis C and/or HIV. The information provided will contribute to the Inquiry’s understanding of the issues that require further exploration and, to the extent that it is uncontroversial, will instruct the final report.
4.02 Many of the witnesses have made statements that may be challenged by parties with a conflicting interest in the subject matter of the Inquiry. Inevitably, recollection of events in the past varies among those involved, and witnesses’ perception of events may vary depending on their involvement and the impact the events had on their own lives and/or those of their families. It would have been inappropriate for the Inquiry to have formed views of facts that are potentially controversial on the basis of untested evidence, from whatever source, at this stage. In this chapter, therefore, evidence is narrated without committing the Inquiry to any conclusion as to the factual accuracy or reliability of the contents, even where the dating of events appears to be patently unreliable.
4.03 Having said that, the Inquiry was very aware that recounting events in such sensitive areas could be a difficult and tiring process. The Inquiry is very much indebted to those individuals who came forward to provide statements.
4.04 The Inquiry would like to thank all those who provided statements and those still in the process of doing so. Timescales for this preliminary report meant that not all patients and their families had completed their statements in time to be reflected in this chapter. The evidence, however, still remains important to the work of the Inquiry and will be taken into account as the investigation proceeds in instructing the Inquiry’s approach and in appropriate circumstances as evidence of fact.
4.05 While each individual’s story is unique, this chapter aims to capture and present the themes that emerged from individuals’ personal accounts of events.
4.06 Contributions have been anonymised to protect the identities of patients and relatives at this stage, whether or not the witnesses may have indicated a willingness to waive confidentiality. However, allegations against third parties cannot be made on an anonymous basis. In the interests of fairness NHS bodies, commercial undertakings and individuals who may be criticised are entitled to know the source of the criticism and to answer it as they think appropriate. No such person has been asked to comment in response to anything raised by the patients and relatives in their statements to the Inquiry at this stage. Accordingly, contributions have also been anonymised as regards NHS bodies and personnel. Some individual witnesses will be invited to give oral evidence in the second phase of the Inquiry (the public hearings). In other cases the NHS and other bodies with potentially conflicting interests will be invited to agree witnesses’ statements as factually accurate. It will be necessary to deal with anonymity on a case-by-case basis as the Inquiry progresses, and witnesses’ wishes as to the disclosure of their identities will be paramount: no one will be obliged to waive confidentiality. However, unwillingness on the part of a patient, for example, to be identified to a clinician who is the subject of serious criticism will effectively prevent examination of the complaint.
4.07 Meanwhile the narrative that follows reflects only the content of the untested statements of patients and their families.
4.08 This chapter is based on 78 witness statements, 48 from patients and 30 from relatives of patients.
4.09 Of the 48 patients, 22 identified themselves as having or having had haemophilia, one described their condition as another rare inherited coagulation deficit, 24 attributed their infection to a blood transfusion and one attributed his infection to a cross-infection from a partner infected by a blood transfusion.
4.10 Of the 48 patients, 46 had contracted Hepatitis C and two had contracted both Hepatitis C and HIV.
4.11 Five patients had had successful liver transplants.
4.12 One patient subsequently died.
4.13 The 30 relatives recounted experiences in relation to 23 patients (four of whom were deceased patients).
4.14 Nineteen of those 23 patients had contracted Hepatitis C, three had contracted Hepatitis C and HIV and one patient had contracted HIV.
4.15 Twenty three relatives provided statements in relation to 18 patients who had also made statements to the Inquiry in their own right. 14 patients had a statement provided by one family member – nine spouses, two siblings, two parents and one other relationship by marriage. One patient had statements provided by both his wife and daughter. One patient had statements provided by two siblings and a nephew. One patient had statements provided by two siblings. One patient had statements provided by his parents. Of those 18 patients, 11 described themselves as having or having had haemophilia or other rare inherited coagulation deficit and seven attributed their infection to a blood transfusion.
4.16 Six relatives provided statements in relation to four patients who had died. In the case of three deceased patients, one statement was provided by a family member (two spouses and a child). In the other case, statements were provided by three children of the deceased. The four deceased were evenly split between those with haemophilia and those whose infection was attributed to a blood transfusion.
4.17 One relative provided a statement but the patient had not finalised their statement to the Inquiry at the time of writing. The patient attributed their infection with Hepatitis C to a blood transfusion.
How the statements were gathered
4.18 All the witnesses initiated contact with the Inquiry. In the overwhelming majority of cases a statement taker from the Inquiry made arrangements to meet with the witness to take their statement face to face. Virtually all the witnesses asked for the meeting to take place away from the Inquiry offices in Edinburgh and at a location chosen by them.
4.19 The Inquiry’s statement takers were trained in interviewing witnesses about sensitive personal matters.
4.20 Witnesses were given, prior to the meeting taking place, a written indication of the areas that the statement taker would like to cover. However, witnesses were free to raise any other relevant matters they wished to include in their statement.
4.21 At the meeting witnesses were asked to narrate all that they could remember about the circumstances of their infection (or that of a relative). Where necessary during the meeting, statement takers went back over aspects of the witness’s recollection to confirm items or to ask some specific questions about matters that were not covered.
4.22 Occasionally, where meetings were lengthy, more than one meeting took place.
4.23 From notes taken during the meeting, statement takers prepared a draft statement for consideration by the witness. Witnesses were free to make as many changes as they felt were necessary, and only once satisfied that the statement was a truthful and accurate reflection of their evidence was the statement signed.
Patients with haemophilia and other rare inherited coagulation deficit
The progress made in the treatment of haemophilia
4.24 The Inquiry heard from a number of witnesses, born in the 1940s, 50s and early 60s, recollections of the changing treatment for haemophilia and its consequences.
4.25 One patient, diagnosed with haemophilia in the late 1940s, described the period before 1964 in the following terms:
In my early years (before treatment began with blood products when I was [ ] years old) the normal treatment in respect of haemophilia was bed rest and for me this would average between 10 and 14 days which was a great inconvenience. Other treatment required could be having a limb in plaster and I could be immobilised for two weeks. My schooling was greatly disrupted due to absences. Also family holidays had to be cancelled at the last minute due to a bleed. I often required treatment two or three times per week in response to bleeds. When I started receiving Factor VIII  the need for extended rest period was greatly reduced….
4.26 Another recollected:
In 1947 I was diagnosed with Haemophilia A aged [ ] months. In those days I was given whole blood. As a young infant I was hospitalised almost continuously. In the first ten years of my life I was hospitalised for seven years… I did not attend primary or secondary school….
4.27 The effect on schooling was also mentioned by a patient whose treatment for mild haemophilia began in the late 1940s: ‘I was in hospital continuously as a child up until 16 years. I was hospitalised for long periods and missed school’.
4.28 Similarly a patient described his treatment in the 1950s:
The only treatment for bleeds when I was young was an injection of Penicillin into my muscles and then rest. I missed a lot of schooling when I was younger due to having numerous bleeds and swellings in limbs and joints.
4.29 One patient, whose treatment had begun in the early 1950s with bed rest (sometimes up to nine/ten months at a time with its negative impacts upon his schooling), and who had started receiving treatment with blood products in the mid-1950s, described the effect of moving onto factor concentrate:
I was first treated with Factor concentrate in about 1969. It was like a miracle cure. Instead of going to hospital for months, you could be treated with Factor concentrate in days or a week at the most.
4.30 For one patient, growing up with haemophilia in the 1960s and 70s proved a difficult time:
My childhood was not the happiest time of my life. As a result of my haemophilia I spent about half of my childhood in hospital and a lot of time in bed at home. I often had bleeds in my joints… The treatment I received as a child for my haemophilia was fresh frozen plasma. I was often hooked up to a drip for a week. I missed so much school that I was held back for a year in primary school. I could not do any sports.
4.31 This patient recalled moving exclusively onto Factor IX concentrate in the late 1970s:
The use of Factor IX concentrate meant that the treatment was much quicker. Although I still attended the hospital as frequently as before the treatment was one injection at a time instead of being hooked up to a drip.
4.32 A similar experience of moving onto Factor IX was described by another patient growing up with haemophilia in the 1960s and early 70s:
My diagnosis of haemophilia did not affect my childhood a great deal. I was not allowed to do ‘boy things’ like football. I was wrapped in cotton wool. As a child, in the 1960s and early 1970s, I was admitted to [ ] Hospital quite frequently, about three or four times a year. There was no Factor product then and so, if I had a bleed, I was probably in hospital for about a month on a drip of cryoprecipitate to try to stop the bleeding. I had a very bad bleed when I was twelve years old and was admitted to hospital for nearly a year. I sat all my exams in [ ] Hospital…
I started treatment with Factor IX when it came out in the mid 1970s. It changed my life as it made treatment so much easier….
Knowledge of the risks associated with treatment by blood/blood products
4.33 Patients ranged in ages (at the time of giving a statement) from 23 – 76. Their diagnosis of haemophilia ranged from 1947 to 1986. Given that their treatment for haemophilia commenced across a number of decades, not all had received the same treatments in relation to their early years. For example some talked of having received whole blood, fresh frozen plasma and plasma. Some also recalled having received blood transfusions. Their recollection of when they first began to receive Cryoprecipitate and/or factor concentrates for their haemophilia stretch from 1959 to 1987. The majority of patients recalled starting to receive factor concentrates in the 1970s.
4.34 The Inquiry asked witnesses about their prior knowledge of the risks associated with their treatment eg what if anything was discussed with them regarding the benefits and risks of treatment and the risk of infection which might occur as a result of the treatment they were to receive/were receiving.
4.35 In response, the great majority of witnesses told the Inquiry that they were not warned about risks associated with the treatment that they were receiving. Only three witnesses could recall any occasions of being warned about any risks associated with their treatment.
At no time during my treatment for Haemophilia was I warned about the risks associated with blood products such as Factor VIII (treatment for haemophilia started in 1967 and the patient received Cryoprecipitate, factor concentrate and synthetic products).
I do not remember anything ever being discussed with me about the benefits and risks of any treatment I received. I do not think that this was discussed with my parents either. I just took the treatment that I was given. I was not given any choice. I, and others who attended the same hospital as me, trusted the treatment implicitly and never thought to question it, When I received the treatment at [ ] Hospital, the doctor would mix my treatment up and then bring it to me in a syringe. I never saw a product information leaflet of any of the treatments I received until I started home treatment which was in about 1985 (the patient began receiving Factor IX concentrate in the mid-70s, having received fresh frozen plasma as a child and at least one blood transfusion).
4.36 Another witness who recalled receiving Cryoprecipitate from about 1959 and factor concentrate in about 1969 recollected:
Nothing was ever discussed with me regarding the benefits and risks of the treatment with blood products. The doctors just gave me it and said ‘this is good for you’.
4.37 One witness who began receiving Factor VIII as an infant (1977, and who had also previously received Cryoprecipitate) recalled that as a child he was never warned about any risks of using Factor VIII. His mother, who also gave a statement to the Inquiry, recalled that:
We were never informed about any risks of infection with Factor VIII and as far as I am aware that was all that was available at the time. I had been informed that it was more dangerous not to treat the bleeds.
4.38 Another witness, who started receiving Cryoprecipitate and Factor VIII as a child in the 1970s, told the Inquiry that nothing was ever discussed with his parents about any risks with blood products.
4.39 His parents, who also provided a statement to the Inquiry, recalled that their son first received Cryoprecipitate about 1976–77 and went on to Factor VIII in about 1977–78:
When [our son] was started on cryoprecipitate and then Factor VIII no one ever discussed with my wife or me the possibility of infection in the products. No alternative treatment was offered and it was put to us that Factor VIII was the way forward.
4.40 Two witnesses, who recalled starting to receive factor concentrate in the late 1970s–80s also told the Inquiry that they were not warned about the risks of the treatment they were receiving.
4.41 Among those witnesses who told the Inquiry that they were not warned about any risks of their treatment were three whose treatment with factor concentrates started in the 1980s.
4.42 The witness who started receiving Factor VIII later than any of the other witnesses (1987) told the Inquiry:
My parents were never informed of the risk of infection prior to my treatment. They were never given any kind of alternatives as an option of treatment for me and were told by Doctor [ ] that this was the only treatment available and that it was the best course for me.
4.43 This witness explained that he had been admitted to a regional hospital and administered Factor VIII in 1987. He was then transferred to a central hospital where he was given Cryoprecipitate. He told the Inquiry of a letter within his medical records (which were examined in the early 2000s) from a doctor at the central hospital to the regional hospital. The witness said that this stated that the central hospital had administered Cryoprecipitate, which they believed was preferable in young children from the point of view of Non-A Non-B (NANB) Hepatitis, but that this may not be practicable in the regional hospital and that his mother had been informed that in future he may receive heat treated Factor VIII concentrate.
4.44 The witness’s father recalled when his son was being treated in the central hospital in 1987 that he and his wife were told:
[T]hat the only treatment for haemophilia was Factor VIII but that they would also try cryoprecipitate. Dr [ ] told us that all blood products at this time were heat treated and were safe.
4.45 One witness did, however, recall having a conversation with his haemophilia doctor about AIDS.
I do recall having a conversation with Doctor [ ] that my wife also attended and this was at the time Aids was first being talked about. Doctor [ ] said that not much was known about Aids yet but that it seemed it could be transmitted through blood products. He thought that sex transmission was not very likely but he thought we ought to use a condom. I can’t put a date on this conversation but I think it would have been in the mid 80s. I can’t recall if any warnings were given to me prior to this about the risk of infection and secondary infection (witness’s first treatment with Factor IX in Scotland was in 1978).
4.46 This witness also recalled that he had been asked, and consented, in 1984–85 to take a large dose of the old untreated Factor IX and then a new dose of the new heat treated Factor IX to test the effectiveness of the new product:
I think Dr [ ] informed me of the possible risks, but this was obvious in any case, because as far as I know there is no other reason to heat treat Factor IX apart from deactivating viruses which might pose a risk.
4.47 One witness, who started receiving Cryoprecipitate in 1969 and Factor VIII in Scotland in 1980, (and who had previously received whole blood and fresh frozen plasma) told the Inquiry that he was not warned about the risks of contracting Hepatitis C (in 1980 known as NANB Hepatitis). However, he did recall that when he required a knee replacement in 1986 he was warned about the risk of contracting HIV by a doctor in the Haemophilia Unit.
4.48 This witness also went on to tell the Inquiry that:
Despite the infection with Hepatitis C I would still have taken/consented to my treatment with Factor VIII notwithstanding any risk to my health because I had no choice. I lived as an extreme patient with Haemophilia for 62 years and I can assure you that I lived life with a ‘bleed to bleed’ attitude. I would say that 99% of Haemophilia patients live life day to day. I thought I would not see the age of 30 years never mind 62 years. All my Haemophilia friends lived like this. In my opinion the Haemophilia community had no choice and would have treated themselves with these products even if the risk of contracting Hepatitis C and HIV were fully explained to them at the time. The NHS kept me alive on numerous occasions. For that reason I do not have any criticism of the NHS.
4.49 Another witness, whose treatment with Factor IX began in the late 60s, reflecting on his experiences in around 1983 told the Inquiry:
One of the few times I can remember being specifically warned about possible adverse consequences of using Factor IX was by a doctor at [ ] whose name I cannot now remember, but his expression comparing Factor concentrates to ‘Russian Roulette’ for viral risk stuck in my mind and was responsible for my avoidance of this treatment for a number of years.
4.50 One further witness could not recall if he was informed of the risk of treatment with Factor VIII, as he was in too much pain at the time he received the product, while three others did not mention the issue in their statements to the Inquiry.
Consent to testing for Hepatitis C and HIV
4.51 A theme that emerged from speaking with witnesses was their recollection that they did not know that they were being tested for Hepatitis C and/or HIV. Almost two thirds of patients commented negatively in this regard.
4.52 A mixed picture emerged. Some witnesses discussed their recollections with regard to both Hepatitis C and HIV (although only two of the witnesses were co-infected). Within that group, some recounted being told their HIV status while others did not expressly say that they had been told of their HIV status – referring rather to their lack of knowledge that they had been tested for the infection. Others spoke only in relation to their lack of knowledge that they had been tested for Hepatitis C.
4.53 For some of these 15 patients who reported negative experiences there was a mixed experience – they were aware of being tested for one infection but not the other.
4.54 Some recalled being aware of being tested for Hepatitis C but not HIV.
At some time in 1980 I was offered a test for HIV. My parents and I were told that there was a chance that haemophiliacs had been infected with the HIV virus. I agreed to the test. The doctor left the room and came back immediately with the results and fortunately I was negative. It was obvious that the test had already been done.
4.55 This witness’s recollection of the date may have been affected by the passage of time.
I have been told that I don’t have HIV but I don’t ever recall being told I was being tested for HIV. When I looked at my medical records I saw I was actually tested for HIV in 1987 and was negative. As stated above whenever I provided blood samples I thought it was my factor levels which were being tested.
4.56 This witness also went on to tell the Inquiry that although he was invited in for a test for Hepatitis C by his haemophilia doctor in 1995–96 a subsequent check of his own medical records suggest that he had been identified as having the virus more than three years previously in 1992.
4.57 Another witness reported a similar experience. He was called in by his haemophilia doctor for a liver biopsy in 1993 but a subsequent check of his own medical records would suggest that he had been diagnosed with Hepatitis C in 1992 (from a retrospective testing of an earlier blood sample). The witness also told the Inquiry that he was never aware that his blood samples were being checked for Hepatitis C or HIV.
4.58 Others recalled being aware of being tested for HIV but not Hepatitis C. One of these witnesses referred to being diagnosed with Hepatitis C in 1979 although the choice of terminology may have been affected by the passage of time.
4.59 For one witness, who was diagnosed with Hepatitis C as a child in the late 1980s/early 90s, there appears to have been some confusion over NANB Hepatitis and Hepatitis C. The patient understands that his parents were told that he was to be tested for NANB Hepatitis (in 1989) but that they were not told that he was being tested for Hepatitis C or HIV. The patient’s father recollected a test for NANB Hepatitis in 1989 but told the Inquiry that he and his wife were not given the results. When told that his son had Hepatitis C (sometime between 1992 and 1994) he and his wife were not aware that their son had been tested for Hepatitis C.
4.60 Three witnesses told the Inquiry that they did not know they were being tested for Hepatitis C and HIV. As their experiences also raise concerns over a delay in telling them of their diagnosis they are recorded in the section which follows. In one case, the patient’s parents also recalled:
We were never told that his blood was being tested for HIV. I can’t recall when HIV came into the media but I remember us thinking it was amazing that [our son] hadn’t got it.
4.61 Other witnesses spoke only in relation to their lack of knowledge that they were being tested for Hepatitis C. Experiences recalled to the Inquiry included:
I was never aware or told I was being tested for Hepatitis C or non A, non B Hepatitis. Prior to being told I had Hepatitis C [about 1993] I was often sent hospital appointments for me to attend for blood tests but was never informed why I was providing blood samples. If I inquired as to why the blood samples were required I was told they were ‘just the usual tests and nothing to worry about’.
I learned that I was infected with Hepatitis C in 1991. Before then I had no idea that my blood was being tested for Hepatitis C. In 1991, I received a letter from [Haemophilia Doctor] asking me to make an appointment to see him immediately. When I attended this appointment he told me that I had been infected with Hepatitis C or Non A Non B Hepatitis.
4.62 This witness went on to tell the Inquiry:
The day I was told of my diagnosis was a very odd day. It seemed as if everyone, who attended [ ] clinic that day, was being told that they had acquired the virus too. People were coming out of their appointments saying ‘Hepatitis C, what’s that?’
4.63 The Inquiry also heard from a witness who had consented to being tested for HIV and Hepatitis C. However, he told the Inquiry that although he was invited in for a Hepatitis C test by his haemophilia doctor in 1996 a subsequent check of his own medical records suggest that he had already been diagnosed with Hepatitis C in 1992. His own medical records suggest that he had been made aware of that diagnosis then, which the witness was clear was not the case.
4.64 The Inquiry also heard from witnesses who knew that they were to be tested for Hepatitis C and/or HIV. This includes one witness diagnosed with NANB Hepatitis in 1975. One of these witnesses (who did not have haemophilia) told the Inquiry that they had to insist on being tested for HIV (in 1987) and had initiated the blood tests for Hepatitis C in 2005, after receiving literature from the Haemophilia Society.
Delays in being informed of their infection
4.65 As part of examining patients’ experiences with regard to finding out about their infection, the Inquiry asked witnesses about how the person telling them of their infection had come to know, and how long that person had known.
4.66 In response a number of patients spoke of their concern that there may have been a delay in telling them of their infection.
4.67 The dates when these patients were told of their infection ranged, for Hepatitis C from 1990 to 1999 and for HIV the witness was told in 1988.
4.68 In relation to Hepatitis C, the witness who recalled being told of their infection in 1990 spoke in terms of NANB Hepatitis:
In 1990 I was once again at [hospital] for some more tests. I saw a lady doctor there who carried out a liver function test. She said to me ‘You do realise that you have liver damage?’ I told her that I did not drink much and she said ’maybe you have got the damage from a blood product’. She did not say much else. When I next saw [Haemophilia doctor] in 1990 I told him that I had liver disease. He said ‘I know. It’s not a big deal’. I asked him how long he had known for. He told me that up until 1984/85 I had had clear liver function tests but that after then, the test results had not been so good. I never knew that my blood was being tested for non-A non-B hepatitis. I never gave my consent for such testing. [Haemophilia doctor ] told me that he was pretty sure that I had non-A non-B hepatitis and that they had given it to me. I think by ‘they’ he meant those who treated me at [Hospital].
4.69 This witness, however, told the Inquiry that he in no way blamed the staff at his Haemophilia Unit for what had happened to him.
4.70 A further witness told the Inquiry that he was called in to hospital, in 1991–92, and told that he had Hepatitis C:
They told me that ’the problem’ I had was the Hepatitis C virus and that they were going to treat me for it. I did not know I had a problem. I asked them when I got the virus. They did not know. I asked them if I was given the virus every time I had Factor VIII but they did not know. I do not know how they found out I had the Hepatitis C virus or how long they had known…The doctors always took blood off you when you went in for an appointment and you did not know what they were testing the blood for. Nowadays I always ask. I did not give any consent for retrospective testing on samples of my blood that had been stored in the past. I did not need to as they would do it anyway. They did what they wanted with my blood.
4.71 Among these witnesses were three who told the Inquiry that while they were called in by their haemophilia doctor to be tested for Hepatitis C, subsequent checks of their own medical records suggest that they had tested positive for Hepatitis C prior to the formal invitation. Two of the witnesses described the time periods involved as having tested positive in 1992 and formally called for a test in late 1995 or early 1996; the other witness described the period as having tested positive in 1992 and formally called in for a test in the autumn of 1993. One described his own medical records as indicating that he had been told of his infection in 1992, something the witness was clear did not happen.
4.72 One of these witnesses also said that he had looked at his medical records while in hospital in the mid-1980s and saw that it was noted that he had NANB Hepatitis but he had never been told about it. This witness also had subsequent concerns over the delay in formally offering him testing until 1996 as he told the Inquiry that he understood a test to have been available from 1991.
4.73 Another witness recalled finding out about his infection with Hepatitis C when a nurse shouted it out when intervening in an altercation between the witness and another patient. This witness told the Inquiry he wondered how long the treating doctors had known (the incident in question taking place in 1999). He told the Inquiry:
I wanted to know when they had taken the test because they never warned me about this. I still don’t know when I was tested for Hepatitis C. I feel like a guinea pig most of the time. I have asked my doctors when this Hepatitis C test was taken and to date I have not been told.
4.74 One witness, who was aware that he was being tested for Hepatitis C in 1995, told the Inquiry he had been admitted to a different hospital the year before his diagnosis, and although he had been told that he had an infection in his blood was not told particularly what infection it was. He also expressed subsequent concern over the delay in offering him testing until late 1995 as he believed that screening was introduced for people with haemophilia in his area in 1992.
4.75 The witness told of his HIV infection in 1988 told the Inquiry: ‘[The Doctor] said that the hospital had known for years but that it wasn’t hospital policy to tell my parents or me as the patient.’ The witness’s parents also recalled being told that it was not hospital policy to tell people that they had the virus.
What patients were told about Hepatitis C/HIV
4.76 The Inquiry was keen to hear about patients’ experiences in the very early days of their diagnosis.
4.77 Patients were asked what they could recollect about what they were told about Hepatitis C and HIV – their severity, health implications and the risk of secondary infection – on being informed of their infection.
4.78 The 23 patients were told of their diagnosis of Hepatitis C/NANB Hepatitis across the time span of 1975 to 2005. Two patients recalled being told of their infection in the 1970s; in 1975 and 1979. The patient told in 1975 recollected that he was told that he had NANB Hepatitis. The other witness referred to being told, circa 1979, that he had Hepatitis C. The passage of time may have affected the recollection of the terminology used at the time.
4.79 A further two witnesses were diagnosed with NANB Hepatitis in the 1980s – in 1986 and 1989 (although in the latter case there is some confusion as to when the parents were told the diagnosis).
4.80 A further witness referred to being diagnosed with NANB Hepatitis in 1990.
4.81 The two witnesses with HIV were told of their infection in 1985 and 1988.
4.82 In relation to Hepatitis C/NANB Hepatitis, the majority of witnesses expressed some degree of negative comment in relation to the information they were given at the time of diagnosis.
4.83 The patient told of his diagnosis by letter from his haemophilia hospital in 1979 recalled that no-one explained to him what the virus was, how it could affect his life, or about the risk of sexual transmission. The witness told how he was a teenager and about to embark on sexual relationships. Much later he and his wife had to seek out information (after 1996) on secondary infection. The witness recalled that his wife was offered testing.
4.84 The witness’s wife told the Inquiry that she was offered testing because they had not been practising safe sex.
4.85 However, in contrast, the other patient diagnosed in the 1970s reflected that at the time the doctors did not know enough about the condition and had no answers to give him.
4.86 Both witnesses diagnosed in the 1980s expressed concern over the information they were given:
I was led to believe at this stage  by Dr [from the Haematology Department] that it wasn’t that serious and was expected to be short lived…It was not until I moved [outwith Scotland] in 1988 that I became aware of the gravity of the condition when a doctor informed me in 1988 I might only have ten years to live.
4.87 It was outwith Scotland where the witness recalled being given advice: ‘[T]hat there was a slight risk of secondary infection but this shouldn’t stop us going ahead and having children’. The witness’s wife decided not to be tested.
We were not told anything about the severity of the condition [Non A Non B Hepatitis] although Dr [Haemophilia Doctor] did explain that it could be passed on to others.
My family were never offered any testing for HCV….
4.88 This patient’s father recalled that his son had been tested for NANB Hepatitis in 1989 but he and his wife had not been told the results. On learning that their son had Hepatitis C around 1992–94, the father recalled that the haemophilia doctor did not tell them about the long-term health implications and they were not told anything about secondary infection.
4.89 The father confirmed that he and his wife were never offered testing for Hepatitis C:
Because we were treating [our son] at home for haemophilia my wife and I were vaccinated for Hepatitis B. We were never offered testing for Hepatitis C.
4.90 The other witness who referred to being diagnosed with NANB Hepatitis, in 1990, commented that he was told by his haemophilia doctor not to worry about it and that it was not caused by alcohol or sex. He was told that he would be given some treatment for it and that if he did not take the treatment the virus could damage his liver. His wife asked to be tested.
4.91 This witness did stress that he did not blame his Haemophilia Clinic for what had happened to him.
4.92 Of those 13 witnesses told of their diagnosis in the 1990s (excluding the witness diagnosed with NANB Hepatitis in 1990) and who expressed varying degrees of unhappiness over the information given to them at the time, a theme common to a number of them was the feeling that there was a downplaying of the severity of the infection.
4.93 One witness, told by his haemophilia doctor in 1991 that not much was known about the virus and that he should not worry as the virus was unlikely to affect him, recalled how, as more information started to come out in the press, he realised that there was more to the virus than he had been told. At the time of his diagnosis he said that he was not given any information about it and did not bother looking into it anymore. He recalled, however, being told a couple of months after diagnosis by the same doctor that there was no proof that the virus was sexually transmissible but that more was being discovered about it and in the meantime it would be better not to have children. His wife was offered testing.
4.94 This later realisation was also referred to by a witness, told casually by his GP in 1993 that he had Hepatitis C (with nothing said about the risks) and who sought further information from his haemophilia doctor. He recalled that his doctor told him not to worry about it as there was a treatment to combat it: ‘A few appointments after that I realised they knew how big it was’. The witness thought that his wife had been offered testing. The witness’s wife recalled that the haemophilia doctor had advised them that there was a chance the infection could be spread to the family.
When I was told, whichever [haemophilia] doctor told me, played Hepatitis C down and told me that there was nothing to worry about and that the virus lies dormant for years. I was told it was a transmittable infection but that it was more the HIV I had to worry about (told in 1992 or 93).
4.95 A witness told in 1996 by his haemophilia doctor not to worry and to lead life as normal as the virus may never affect him, as he had the genotype easiest to get rid of, told the Inquiry that he did his own research and found out that his genotype was the worst one to have. He had begun researching his infection as his health had begun to deteriorate. He recalled that after he was told of his infection he was warned about the risk of transmission and his wife was offered testing.
4.96 Another witness recalled a similar experience in 1996 of being told by his haemophilia doctor not to worry as the strain of the virus was not considered one that would go on to cause him problems but he told the Inquiry that his wife was not offered testing.
4.97 A witness told in about 1992 recalled:
Dr [Haemophilia doctor] said that the risk of Hepatitis C being transmitted through sexual intercourse was zero. He implied that it was not life threatening. I recall being given leaflets at the hospital with information on Hepatitis C. The hospital did advise me that my wife and family could be tested for Hepatitis C but this was said very casually.
4.98 The two witnesses told in 1996 recalled:
I was told not to worry about it. I am not sure if I was told even that the virus affects your liver. I did not worry about the virus to start with although from then on it was in my head. At that time I was not referred to a specialist nor was I told of the risk of infecting others.
4.99 Sometime later that year the witness recalled being told about the risk of secondary infection and his wife was tested.
The long-term risk to my liver and the risk of end stage liver disease was never discussed. I would describe the advice given to me at this time as being casual and so on that basis I thought I had nothing to worry about.
4.100 The witness also said that the risk of sexual transmission was never discussed with him.
4.101 A witness, told in 1993, recalled that although his haemophilia doctor and a liver specialist talked through Hepatitis C prior to a determinative liver biopsy, he felt that he found out more from when campaigns were publicised. He told the Inquiry that he was not told about Hepatitis C developing into cirrhosis of the liver or the risk of secondary infection.
4.102 Perhaps the most troubling diagnosis recounted in allegations to the Inquiry came from a witness told of his Hepatitis C infection in 1999:
In 1999 I was standing at a bus stop when a ward maid from [Hospital] said ‘Sorry to hear you have HIV [ ].’ Another Haemophilia patient who worked in the [ ] at [Hospital] had told her that all Haemophilia patients in [Hospital] had HIV. I went to find the patient who had spread the rumour and during an altercation with him the Haemophilia Ward Sister broke the argument up and stated ’[ ] you don’t have HIV, you have HCV’. I was so humiliated and shocked.
4.103 A patient told in 1991–92 reflected upon how the enormity of the diagnosis affected his ability to recall what exactly he had then been told by his haemophilia doctor and liver specialist:
I cannot remember what I was told about the Hepatitis C virus. I think I was told that it affected the liver. I was not told about the severity of it or the health implications of it. They probably did tell me about the risk of secondary infection but my mind went blank. When you are told something like that you just think ‘what is going to happen to me?’ and you do not remember anything else. You had every faith in the doctors. If they said something, you did it. What reason did we have then not to have faith? (diagnosed 1991 or 92, whose wife was not tested until 2002 when she asked).
4.104 One witness had the experience of being given a false positive for HIV and on being re-tested found to have Hepatitis C. He recalled being given one leaflet about Hepatitis C and having to wait 18 months to see a liver specialist, where he received fuller information (diagnosed 1999).
4.105 One witness, diagnosed as a teenager in 1993 or 94, told the Inquiry:
After being told I had Hepatitis C I wasn’t given any information on it or told what a positive result meant. I was offered no support, advice or counselling other than not to drink alcohol. I had to find out for myself what Hepatitis C was. No one explained to me about the risk of secondary infection.
4.106 This witness recalled that none of his family were offered testing. The witness’s mother, although unable to recall when in the early 1990s she found out about her son’s infection, told the Inquiry that she did not receive any warning about secondary infection and no one else in the family was offered testing.
4.107 The witness who was the latest to be told of their infection, in 2005, (after initiating tests at her GP) recalled that her GP made a hospital referral so that she could receive specialist advice. However, the witness found the clinic unhelpful:
I was advised on the health implications for me and I only knew what I had read in the leaflet [obtained from the Haemophilia Society]. I was never advised about the risks of secondary infection other than what I had read in the leaflet.
4.108 One witness diagnosed in 1994 appeared content with the advice he was given:
They [Haemophilia doctor and liver specialist] said that Hepatitis C was a virus infection of the liver and that I had almost probably contracted it through blood products in the 1980s. I was told that the virus caused liver damage and cirrhosis but that it wouldn’t kill me the next day and that it was a long-term infection. I think it was at this same meeting that I was warned about secondary infection and my then girlfriend, who is now my wife, was offered a test for Hepatitis C.
4.109 In relation to those witnesses diagnosed with HIV neither felt that the full severity of the infection was discussed with them:
When I was told that I had HIV I was told that it could be passed on and not to have a family. I was told that I had to be careful if I cut myself. The severity of the HIV was not discussed with me or the health implications (told 1985).
4.110 The other witness recalled that when his parents were told in 1988 the haemophilia doctor told them very little about it and was ‘quite blasé’. The witness recalled waiting a year to be seen by a specialist.
4.111 The patient’s parents recalled:
Once we had been informed that [our son] had HIV no one ever spoke to us about secondary infection and neither my wife nor I were ever offered testing.
Factor concentrates manufacturer
4.112 Patients were asked if they could recall who manufactured the Factor concentrates they were treated with.
4.113 A mixed picture emerged from the responses.
4.114 Generally patients did not know who manufactured their blood products.
For some of these witnesses, they had made assumptions about the manufacturer:
I started home treatment in the late 1970s…I do not know if the Factor VIII was produced by the Scottish National Blood Transfusion Service or if it was a commercial product. My wife and I would sometimes pick the treatment up from the Scottish National Blood Transfusion Service so we always thought I was getting Scottish product. It was not until later, in about the 1980s, that we realised, from what we read in the newspapers and from talking to other people with haemophilia, that the Factor concentrate was coming from different places.
I have no idea whether the products I was treated with were produced by the Scottish National Blood Transfusion or they were a commercial product…However, a haemophilia nurse did tell me the products had come from America and that I can find out the batch numbers.
4.115 One other witness told the Inquiry that he was not sure if he was treated with SNBTS products or commercial products although he was told in 2003 that there was no record of him ever having received American product. However, the witness was doubtful about the accuracy of the report he had received.
4.116 A small group of witnesses believed that they had been treated with SNBTS product although this recollection tended to be caveated.
I think I started being treated with Factor concentrate in the late 1970s. [Haemophilia Doctor] told me that the Factor IX came from the Scottish National Blood Transfusion Service and so I thought all the Factor IX came from there. I assumed that I received Scottish product from Scottish donors.
I think it is fair to presume that for most of my childhood I would have been using NHS produced Factor IX which for much of that time would have been produced in the Protein Fractionation Centre in Edinburgh but I have no further details. It may be that before 1976, when blood products from the PFC in Scotland became available in significant quantities, I was treated with Factor IX from the BPL in England or imported from the USA but I have no details.
4.117 One of these witnesses thought that although he had used SNBTS product, he had once (as a child, sometime between 1982–87) used Factor VIII from France. His mother, as far as she could recall, thought that the Factor VIII was always Scottish.
4.118 Three witnesses told the Inquiry how when they received their treatment in hospital they had no idea of the manufacturer as the product was already mixed up in a syringe.
When I received the treatment at [ ] Hospital, the doctor would mix my treatment up and then bring it to me in a syringe. I never saw a product information leaflet of any of the treatments I received until I started home treatment which was in about 1985.
4.119 This patient later recovered records which indicated that he had received treatments described as ‘PFC FIX’ from 1977 to 1996. The witness commented that he thought he had been treated with a product called DEFIX but he was unsure as to whether this was the same thing. The witness, however, told the Inquiry that the record he received listed only a small fraction of the treatments he had received over the years.
Because all of my treatment until five years ago was in hospital I never knew the source of the product or the batch number. I only ever saw liquid in the syringe.
4.120 Others told the Inquiry that they had received both SNBTS and commercial product.
I do know that I was given product from America. The Factor VIII bag was like a crisp bag and had an American flag on it. The Haemophilia Unit used to constantly tell us how expensive this was and that it cost £240 or even more per bag. The reference to the price was annoying. They chose to buy it. I also received Scottish products manufactured by the Scottish National Blood Transfusion Service (SNBTS).
I recall seeing in my medical records that the Factor VIII I was given in about 1981 was Armour make which is a commercial product.
4.121 This witness’s parents recalled:
Within about a year of starting the home treatment (1978 or 1979) we started getting American Factor VIII. We got all of the Factor VIII from the hospital. We had the American Factor VIII for maybe two years. I remember it well. It had a yellow label with a Mr Men smiley face on it. I think it was a Baxter make and there may have been another company who supplied it. The Factor VIII we gave [our son] the rest of the time (from 1980 or 1981) I think was from Ellen Glens Road, Edinburgh.
4.122 One witness told the Inquiry that he had the illusion that all the factor product used to treat people with haemophilia was produced by the SNBTS but a subsequent search of his medical records had revealed the batch numbers of infected Factor IX he had received between 1978 and 1986 had come from San Francisco.
Patients who received infection with Hepatitis C through a blood transfusion and who were not being treated for a blood disorder
Knowledge of the risks of infection associated with a blood transfusion
4.123 From the 24 blood transfusion patients that the Inquiry heard from, the time span for the date of receiving the blood transfusion the witness identified as responsible for their infection ranged from 1974 to mid-1991.
4.124 All 24 patients had contracted Hepatitis C.
4.125 The Inquiry asked witnesses about their prior knowledge of the risks associated with their treatment eg what if anything was discussed with them regarding the benefits and risks of treatment and the risk of infection which might occur as a result of the treatment they were to receive.
4.126 In response virtually every patient told the Inquiry that no-one discussed the risks of infection from a blood transfusion. Their transfusion dates ranged from 1974 to May 1991.
4.127 This has to be seen, however, against the context in which, and the date when, the blood transfusion was carried out.
4.128 Half the witnesses described their transfusions taking place in an emergency situation. Their transfusion dates ranged from late 1975 to 1990.
4.129 Some reflected on their transfusions in these circumstances:
Nothing was discussed with me about the benefits and risks of a blood transfusion. A number of my family came to the hospital when I had my operation and I am not aware that the benefits or risks of this treatment were discussed with any of them. In those days doctors did whatever they wanted. Basically, in my case, it was an emergency and I needed the blood transfusion (transfusions received in 1975).
I do not remember any discussion about the risk of infection from a blood transfusion and I very much doubt that there was such a discussion…The transfusions were in an emergency situation, and I have absolutely no regrets that this potentially life-saving procedure was undertaken (transfusions received in 1975 and 76).
I was unconscious at the time I received the blood transfusions and so nothing was discussed with me about the benefits and risks of this treatment. It was part of the emergency treatment which I received so there was really no choice with regard to whether I had the blood transfusion or not (transfusion received in 1990).
As I was unconscious when I received the blood transfusion nothing was discussed with me regarding the benefits and risks of this treatment and I did not have the opportunity to refuse it. In all fairness, even if I had been conscious prior to receiving the blood transfusion, I would not have refused it (received transfusion in 1981).
I was not given any information about the risks or benefits involved in a blood transfusion. I did not give it any thought. I was not given an opportunity to refuse the blood transfusion. Even if I had been given the opportunity to refuse it, I would not have done so as I did not think there were any risks involved (received transfusion in 1985).
4.130 One witness, who was in and out of consciousness following childbirth, commented:
[I] was in and out of consciousness so I am not aware if anything was discussed with me about the benefits or risks of treatment. I know that my husband told the doctors to do anything they needed to do and I do not believe they mentioned anything to my husband about risk of infection with the treatment (received transfusion in 1988).
4.131 Others described their transfusion as having taken place during surgery. The transfusion dates ranged from 1974 to 1987. One such witness, who was a child at the time, told the Inquiry that her parents were never told of her transfusion (in 1980), the fact only came to light in 2006.
4.132 A number of witnesses received a transfusion in connection with childbirth. Their transfusion dates ranged from 1979 to 1991. Two did recall having doubts about the necessity for the transfusion, one subsequently and the other at the time.
I received two units of blood. When the nurses gave it to me they said that it would perk me up and make me feel a lot better. I do not think I necessarily needed the blood as they only gave me two bags. If I had lost so much blood, surely I would have needed more than two bags of blood? (received transfusion mid-1991).
I recall the staff sister said to me on [ ] 1982 that I required the transfusion. I asked why, as I didn’t really want to have it but as I was dizzy and light headed she said I needed it as it was life threatening (received two units of blood).
4.133 This last witness did not explicitly state that she had not been advised of the risks of treatment.
4.132 One witness told the Inquiry that she had received a transfusion in 1989 after surgery which had gone well. Another said that the transfusion had been given, in 1975, after he had been admitted to hospital with persistent vomiting. A further witness had received a blood transfusion in 1977 following post-surgery internal bleeding.
How the patient found out they had Hepatitis C and consent to testing for Hepatitis C
4.135 Of the 25 patients diagnosed with Hepatitis C (24 identifying the cause as a blood transfusion and one identifying cross-infection), the date they found out that they had been infected ranged from 1976 to 2008.
4.136 The patient who was diagnosed in 1976 told the Inquiry that he was aware that he was under investigation for a continuing hepatic illness following transfusions in 1975 and 1976 and that he was told informally in 1977–78 that he had NANB Hepatitis. This was formally recorded in 1982.
4.137 The next earliest dates two witness told the Inquiry that they found out they had Hepatitis C was 1990.
4.139 A number of witnesses, whose diagnosis was given to them by their GP, told the Inquiry that they did not know that they were being tested for Hepatitis C by their doctor.
4.140 One witness, who gave blood at a routine health check up, told the Inquiry:
The Nurse takes routine blood tests and the results are sent to the GP who examines the results… On this occasion the results were good…However, I was informed that my liver function tests (LFTs) were abnormal, showing elevated results and so more bloods were taken at the Clinic. At no point was I informed or warned that I was being tested for Hepatitis C (diagnosed 2008).
4.141 Another told the Inquiry that he thought when his GP said that she would test for everything (to which he consented), that ‘everything’ referred to things like diabetes and cholesterol levels. He did not expect to be tested for Hepatitis C and HIV (diagnosed 1998).
4.142 Another witness recalled not only receiving no specific warning that she was to be tested for Hepatitis C (following abnormal liver function tests) but that it was the surgery receptionist who told her the results over the phone (diagnosed 2005).
4.143 Another witness recalled that her GP was testing her blood to monitor the side-effects of new medication but that she did not know what specifically these tests were checking for (diagnosed 2005).
4.144 Two other witnesses, told of their diagnosis by their GP, recalled thinking that the GP was doing a broad spectrum check but did not raise concerns with the Inquiry over lack of knowledge about testing for Hepatitis C (the witnesses were diagnosed in 1998 and 2002 or 03 respectively).
4.145 Being told by administrative staff rather than the doctor was the experience recalled by a witness whose diagnosis came from the hospital, where her arthritis was being investigated, in 1990. The witness was aware of being tested for Hepatitis C.
4.146 A witness referred by her GP to hospital for an exploration of her tiredness told the Inquiry that the doctor there took blood tests but did not say what he was testing for (diagnosed 1990).
4.147 For those witnesses who found out that they were infected after pre-surgery admission checks, both told the Inquiry that they did not know that their blood samples would be tested for Hepatitis C. In one case the witness told the Inquiry that the diagnosis had been made a couple of months earlier by a different hospital, to which he had been referred following abnormal results for his liver and cholesterol, but he had not been informed of the result.
4.148 A number of the witnesses found out about their infection after donating blood, while four witnesses told the Inquiry that they had been traced by the NHS as being the recipient of a transfusion from an infected donor.
4.149 A further witness recalled being told of her diagnosis at an out-patients clinic she had been attending following a hospital admission to explore her continuing feelings of being unwell. The witness told the Inquiry that numerous tests had been carried out during her admission but that she was not told what the tests were for (diagnosed 1993).
4.150 The Inquiry was told by two witnesses that they felt that a negative inference on the issue of their alcohol consumption arose following initial abnormal liver function tests and prior to their diagnosis of Hepatitis C:
I returned to see Dr [GP] about a week later to get the blood test results.
Dr [ ] said to me that I would need to cut down on my drinking. I do not really drink alcohol so I told Dr [ ] this. …[Dr ] took another blood sample from me to re-do the tests. I do not think [GP] mentioned the Hepatitis C virus to me at this stage but I knew that the tests were showing a problem with my liver. [GP] is a good doctor. [GP] was concerned about what [GP] had said to me about cutting down on alcohol and apologised to me for that comment (diagnosed 2002 or 03).
What patients were told about Hepatitis C
4.151 Those patients who told the Inquiry that they had become infected via a blood transfusion or by secondary infection were informed of their infection with Hepatitis C across the time span of 1977–78 to 2008. However, the witness told in 1977–78 was told, informally, that he had NANB Hepatitis (and formally in 1982). He was subsequently formally told he had Hepatitis C in England. The next earliest date of diagnosis with Hepatitis C was 1990 (two witnesses).
4.152 Just under half of these patients were told their diagnosis by their GP (across the time span of 1995 to 2008). A number of these witnesses expressed varying degrees of unhappiness with the advice coming from their GP.
4.153 Comments ranged. At one end of the spectrum a witness told the Inquiry that he felt that the GP did not know much about Hepatitis C (he had said that there was no cure) and felt that the GP was glad to see the back of him (diagnosed 2005).
4.154 Another recalled that the GP had given her some leaflets but left the issue of sexual transmission to the hospital to deal with. This witness had initially been told of her diagnosis over the phone by the GP receptionist. (diagnosed 2005).
4.155 One witness recalled having the feeling that the GP was drawing negative inferences about the route of infection:
I was told that it could lead to cirrhosis of the liver and was usually associated with drug users reusing dirty needles, sexual transmission and blood transfusions. I was really stunned at this time…I was never asked about my surgical history, but I mentioned I had had a blood transfusion. I was advised that I would have to go to [ ] Hospital to be treated. I was also given a leaflet, with a helpline and website to go and check out. I was in total shock and completely unprepared for the news. It was a massive blow to the entire family (diagnosed 2008).
4.156 One patient expressed feelings that the GP had glossed over the seriousness of the virus: ‘All he said was, “Don’t drink and tell your dentist”’ (diagnosed 1995).
4.157 One witness described a distressing experience:
I was told by my GP that there was no cure for Hepatitis C and that this virus was going to kill me. I was offered no counselling and was given no follow up following this diagnosis (diagnosed 1998).
4.158 Most of these witnesses felt more advice and information was given when they attended the hospital the GP had referred them onto.
The Nurses were the first people to properly explain and counsel us on Hepatitis C, including: how it could be acquired, onward transmission, the need for testing for both my wife and I, the treatment available, the implications and what to expect.
At my first consultation there had been a mix up with my appointment time and so I was seen on the same day as prisoners from jail who were heavily guarded and all accompanied by their prison guards. This was an upsetting experience for me. However, [nurse] was an excellent advisor and explained to me the pros and cons of the Interferon treatment to me. She gave me some leaflets about Hepatitis C. I recall that I felt optimistic for the first time since I was diagnosed.
At my first meeting I was seen by one of [the consultant’s] team and was ‘gobsmacked’, due to the shock of this diagnosis. I told him that my GP had told me that I had nothing to worry about. He explained to me about the virus lying dormant for twenty years and the adverse effect this can have on your liver. He warned me about the risks of liver disease, sexual transmission, and treatment options. We discussed Interferon treatment.
4.159 One of these witnesses, however, felt that he found out more information on Hepatitis C from his own reading rather than what the doctors or nurses told him. He also told the Inquiry of appointments cancelled by the hospital such that he did not attend the hospital for three years.
4.160 Two witnesses recalled that their GP told them that they did not know much about Hepatitis C (and referred them onto specialist clinics). One of these witnesses recalled an unpleasant experience at the hospital he was referred to. The witness had attended for the results of his liver biopsy (which were not available to the doctor) and when he asked the doctor if he could get them the witness recalled that the doctor remarked that as he had had Hepatitis C for 27 years another week or two would not make any difference.
Dr [ ] explained how the virus could be contracted – by blood transfusions, drug users sharing needles, unprotected sex to a certain extent and the exchange of bodily fluids…Dr [ ] discussed the risk of secondary infection. [GP] explained that there was a possibility, but only a very slight chance, that I had infected them [wife and children]. She told me to avoid unprotected sex, blood spillages and sharing toothbrushes and razors. We discussed how the virus was transmitted…Dr [ ] referred me to two different hospitals
[ ], to see which one would give me an appointment sooner (diagnosed 2002 or 03).
Dr [ ] also told me about the precautions I should take. [GP] told me that my partner should visit his General Practitioner to be tested for the virus as there could be cross infection in a household through things like toothbrushes and razors. [GP] told me that it was very rare that it was sexually transmitted.
… Dr [ ] also told me that I would need to have vaccines against Hepatitis A and Hepatitis B”. (diagnosed 2005)
4.162 Another recalled that their GP had, in 1998, facilitated contact with someone from the SNBTS to explain more about the virus.
4.163 Forty percent of transfusion/secondary infection witnesses were first told of their infection with Hepatitis C in a hospital environment. The time span of being told of their diagnosis ranged from 1977–78 to 2005.
Half of these patients expressed a sliding scale of misgivings.
4.164 One patient, diagnosed in pre-surgery checks in connection with his coronary care in 2005 recalled that the coronary doctor told him that he did not know much about Hepatitis C and directed him to his GP. The witness left for home shocked and upset. His GP similarly admitted that he did not know much about the virus, although the witness recalled that the GP offered to find him information on the internet and to chase up his appointment at the Liver Clinic.
4.165 Another told the Inquiry that she was informed in an insensitive manner. The witness’s doctor had been investigating her arthritis and she obtained the results of her Hepatitis C test over the phone from the doctor’s secretary. She then experienced a short delay before the doctor was willing to discuss the virus as he wished a liver biopsy to be performed first (diagnosed 1990).
4.166 Another commented that her hospital doctor, who was investigating her symptoms of tiredness and general feelings of being unwell, did not explain much to her about Hepatitis C. She told the Inquiry that he told her that nothing could be done about it and she was never offered any treatment and stopped going to the hospital. The witness was in her mid-50s when she was diagnosed in 1990. She told the Inquiry that no-one ever mentioned secondary infection to her and that her husband was never offered testing.
4.167 Another told the Inquiry of unpleasant inferences about how she had contracted the infection, when told at an out-patient’s clinic following a hospital admission to determine the reason for her continuing symptoms of being unwell:
I had never heard of Hepatitis C so I asked him, ‘How do you get Hepatitis C?’. He said, ’Drug use where needles are shared or numerous sexual partners’. I explained that my husband and I had never taken drugs and we married when we were young so we hadn’t had any other partners. He did not respond to this…Dr [ ] said there was a treatment called Interferon which had little effect. I asked him what I could do and he said nothing (diagnosed 1993 and at the time of giving a statement had not received any treatment).
4.168 One patient, told in an in-patient setting in relation to a drug rehabilitation programme recalled:
Doctor [ ] came to me and put a brown envelope on my bed. She said, ‘Sorry you’re Hepatitis C positive’ and walked out of the room (2001).
4.169 The patient then self-discharged from hospital.
4.170 One witness, who did not raise any issues about the initial advice coming from the hospital on diagnosis, told the Inquiry that following an unsuccessful course of Interferon and subsequent GP appointments:
By this time  I had given up speaking to my GP about my symptoms. [GP] admitted that [GP] didn’t know anything about Hepatitis C as [GP] had never treated anyone with Hepatitis C before and [GP] was treating it like Hepatitis B (diagnosed 1993).
4.171 Two witnesses recalled more positive experiences. One, diagnosed in pre-surgery admission checks in connection with his coronary care, felt that his surgeon had explained about the virus and its consequences and that his GP was and remains very supportive and helpful and arranged for his wife to be tested (diagnosed 2003).
4.172 The other told how her doctor who had diagnosed her Hepatitis C had told her of the risks of secondary infection and had advised her husband to go to their GP for testing (diagnosed 2005).
4.173 The witness diagnosed with NANB Hepatitis in 1977 or 78 reflected that he had been infected at a time when knowledge was sparse:
I am fairly sure that nothing was said about the potential consequences of Non-A Non-B infection. Certainly nothing was said that worried me and, at the time, I did not have the incentive to look into current medical literature on emerging liver diseases. At that time the Non-A Non-B virus was presumed to be viral….
4.174 Three witnesses told the Inquiry that they had been traced by the SNBTS after having donated blood. One, who was alerted in 1992, recalled that after a further blood test carried out by the SNBTS revealed that his liver function tests were normal, he heard no more and it was only on making an application for the Skipton Fund, in 2004, that he received a referral to a specialist clinic. His family had, however, been tested in 1992.
4.175 One alerted in 1998 had found the SNBTS doctor very supportive and nice, while another recalled being told at the appointment with the SNBTS about the severity of the infection and the risk of secondary infection. Her family was subsequently tested (diagnosed 1996).
4.176 One witness, who had been traced by the Health Board described how a nurse had visited the house personally after confirmatory testing and had discussed passing on the infection (diagnosed 1997).
Symptoms of Hepatitis C
4.177 The Inquiry asked witnesses about the symptoms of their infection. Nearly every witness described having adverse symptoms related to their Hepatitis C infection at some point. Experiences varied not only across the symptoms cited but also within the symptoms themselves – some experiencing the symptom constantly while others experienced it intermittently or had had bouts of the symptom. Also the magnitude of the same symptom varied for witnesses. Witnesses ranged in the extent to which they felt debilitated by their symptoms. Five witnesses had had a liver transplant. For some, treatment had had a positive impact.
4.178 The great majority of witnesses described more than one symptom.
4.179 Set out below is a description of some of the more commonly recalled symptoms across the witnesses, although this does not attempt to capture the variety noted above. These descriptions relate to what witnesses described as having been felt by them, as opposed to capturing any internal physical impacts that may have been detected only on medical investigation.
4.180 A prominent theme across the witnesses was symptoms related to negative impacts on energy levels. Witnesses chose a variety of words when describing symptoms in this area. They talked of fatigue, tiredness, lack of energy, lethargy, lack of motivation, exhaustion, being washed out and lifeless.
4.181 Just under a fifth of witnesses also described feeling depressed.
4.182 Lack of concentration was also another symptom referred to by just under a fifth of witnesses.
4.185 A number of witnesses described having varices (a sign of liver cirrhosis), although only three mentioned vomiting blood (one indirectly as he referred to his bleeds being life threatening and requiring numerous hospital admissions). Two witnesses with varices also reported being routinely encephalopathic (a symptom of advanced cirrhosis).
Symptoms of HIV
4.186 Two witnesses were co-infected with HIV. One witness told the Inquiry that he has had no symptoms associated with his HIV.
4.187 A different experience was recalled by the other witness. He described having had a Non-Hodgkin Lymphoma and suffering from HIV related dementia, which affected his memory and cognitive processes. In relation to his cancer treatment, the witness told the Inquiry that he believed he was given dangerous advice at the time to come off his HIV drugs to undergo chemotherapy.
Treatment for Hepatitis C
4.188 Just over 70% of witnesses who spoke to the Inquiry about their Hepatitis C infection had received treatment. The time span for their treatments commencing ranged from 1990–91 to 2009. A number had received more than one treatment. Treatment consisted either of Interferon on its own, or Interferon combined with Ribavirin, or in one case with Amantadin. In some cases the Interferon received was pegylated. Interferon was administered by injection, anything from one to three times per week, while Ribavirin was taken in tablet form. About a third of those receiving treatment told the Inquiry that it had been successful/that the virus was dormant or that current indications were that the treatment had been successful.
4.189 Virtually all of the patients who received treatment told the Inquiry about the distressing nature of the side effects. Adjectives such as ‘horrendous’, ‘ghastly’, ‘dreadful’ and ‘debilitating’ were used by some to convey the depth of the distress suffered.
The treatment with Interferon was horrendous. The side effects were like a truck had hit you. It is like flu multiplied by 100. I lost weight…My hair started falling out. My sense of taste changed and I had constant joint pain. My mood was affected and my cognitive ability was affected. It was like I had brain fog. I had peripheral neuropathy affecting my feet and hands (drug trial treatment began in 1991).
The treatment with interferon and ribavirin was horrendous and I would never wish to go through it again…After the first injection I started suffering from side effects. Throughout the treatment I suffered from insomnia, nausea, headaches, sweating, joint pain, constipation, peripheral neuropathy, irritation of the skin and low mood. My haemoglobin levels fell very low. This made me very light headed and weak due to the drop in oxygen going round my body. I became very unsteady on my feet. My low haemoglobin level caused me to suffer hypertension…My platelets and white blood cells were affected. My bone marrow and thyroid glands were checked every two weeks. The level of my medication had to be altered during the treatment due to weight loss and I was given a number of other medications to counter the side effects. I had to inject myself with the interferon which I found very difficult to do, knowing how it was going to make me feel. I know that people have committed suicide while being treated with these medications (treatment began in 2008).
Whilst I was on Interferon I suffered constant flu like symptoms. Six weeks into treatment I suffered oral abscesses. My stomach was sore. The treatment directly affects your immune system and it has been described as like having almost two units of blood less within your system to give you some idea of what it feels like. ..My skin dried up. My hair was becoming considerably thinner and dry. I lost two stones in weight despite forcing myself to eat. I lost my appetite and did not drink any alcohol. I am [sic] lethargic…
My sleep was all to pot. My concentration was shot to bits mainly due to the intense fatigue. (treatment began in 2009).
4.190 Witnesses described multiple symptoms. The most commonly reported side effect was suffering from flu-like symptoms (sometimes constantly).
4.191 Equally prominent was low mood/depression, with seven of these witnesses reporting having been prescribed anti-depressants and two being referred to a clinical psychologist/psychiatrist.
4.192 Another prominent theme across witnesses was the negative impact on energy levels. Witnesses used a variety of words to describe symptoms in this area – they talked of fatigue, tiredness, being lethargic, lacking energy and being exhausted.
4.193 Other commonly reported side effects included loss of weight and loss of appetite, nausea, skin complaints, hair thinning or falling out, poor concentration, joint pain, insomnia, and headaches.
4.194 The Inquiry heard from a small number of witnesses who felt that their treatment for Hepatitis C had left its own adverse impact on their health, describing continuing tiredness/fatigue, insomnia, persistent clinical depression persistent short-term memory problems and Irritable Bowel Syndrome. One witness described being left with hay fever, prickly heat, urticaria, asthma, chronic bronchitis and the need for glasses. While this witness had noticed an improvement on taking the vitamin B12 she described how she was angry that she could not get any recognition that the treatment was causing the symptoms.
4.195 These witnesses were evenly split between those whose treatment had been successful and those for whom it had not.
4.196 A further witness, despite being told that no virus could be detected on a PCR test (in 1993 and subsequently) told the Inquiry that he suffered on-going increasing ill-health, describing gastric problems, thinning of his teeth, being chronically underweight, a poor tolerance for the cold and Peripheral Neuropathy. He felt that the treatment had to that extent been ineffective.
4.197 Another witness, whose treatment was successful (having been told that the virus was now ‘dormant’), described having chronic tiredness (although he did not specifically relate this to the treatment).
4.198 Two patients recalled having some NHS funding complications in accessing their treatment (one for a second course of treatment with Pegylated Interferon after Interferon and Ribavirin had been unsuccessful and the other for a first course of treatment with Interferon) although both eventually received their treatment. One of these patients told the Inquiry that she had to wait a year before starting her Interferon treatment:
I had to go on a waiting list. According to the Nurse this is because the treatment costs thousands of pounds and so resources were at play. At this time  I think the treatment was at least £13,000 per patient. I had to wait one year before being offered treatment. I remember worrying about the effect this delay would have on my liver for this year.
4.199 Just over a quarter of the witnesses told the Inquiry that they had not received any treatment for their Hepatitis C. Of those, just under half declined the offer of treatment and one explained that at the time of his diagnosis with NANB Hepatitis in 1975–76 there was no treatment and he does not currently experience any symptoms of Hepatitis C.
4.200 Of the remainder who had not received treatment, the Inquiry heard a number of explanations.
4.201 One witness, diagnosed in 1993, told the Inquiry that she asked at the Liver Clinic about treatment in 1994 and was told that her type of Hepatitis C [Genotype 1] would not respond well to treatment:
They said it would be a year in bed receiving injections with little hope of success. They also said that the blood tests didn’t tell them everything but that the Hepatitis C was active and aggressive. They said they didn’t know enough about Hepatitis C and the treatment would make me very sick…This made me feel there was no help and I was left afraid and alone with a very poor quality of life (the witness told the Inquiry of her deteriorating health).
4.202 One witness told the Inquiry that, following his diagnosis in 2002–03, he has been told twice that the type of Hepatitis C virus which he has is untreatable.
4.203 A patient, diagnosed in her mid-50s in about 1990, told the Inquiry of her experiences at the hospital she was referred to for her symptoms of tiredness and where her Hepatitis C diagnosis was made:
He [doctor] more or less told me that nothing could be done about it…I was given very little information and he didn’t offer me any treatment. After Dr [ ]
retired [ ], I wasn’t referred on to anyone else and I stopped going to the hospital.
4.204 Another witness, diagnosed in 2005, told the Inquiry that he did not attend the specialist hospital clinic between March 2006 and early 2009 due to the hospital cancelling appointments. A later appointment in 2009 was also cancelled. He told the Inquiry: ‘I am quite laid back about the virus but someone needs to get my treatment sorted out’.
4.205 One witness currently in her 70s, who said that she did not have any symptoms related to Hepatitis C, said that she had no idea if or when she was going to receive treatment, following her diagnosis in 2007. A number of follow-up 6-monthly appointments had been cancelled since mid-2008 (one by the witness).
4.206 A witness, diagnosed in 1998 but displaying no symptoms, told the Inquiry that she was not offered treatment as then it was only offered to people with more advanced symptoms. This witness told the Inquiry that she cleared the virus without treatment.
4.207 Another reported that he had been told that he could not have Interferon treatment because of the health of his heart (diagnosed 1998).
4.208 Only two witnesses recalled that their treatment, although with some initial problems, had been well tolerated and that they continued to feel well, work and carry on life as normal.
Treatment for HIV
4.209 Two witnesses were co-infected with HIV. One, diagnosed in 1985, told the Inquiry that at the time he was told no treatment was offered. However, he told the Inquiry that his ratios have been stable and he has no symptoms associated with his HIV.
4.210 The other witness, diagnosed in 1988, recalled waiting a year to see a specialist following his diagnosis:
I was informed when I did see one, that it was just as well as I was at the stage of developing AIDS and was rapidly running out of time. This was Dr [ ] and he put me on the strongest anti retroviral drugs available at the time. I had to take the medication every four hours, which was very disruptive in general, with regards to sleeping, eating, education, physical and mental health etc. I even had to set my alarm for 4 am so I would wake up and take the medication, which I remember being quite upsetting at the time. There can be a lot of harsh side effects with HIV medication, and this was especially true of the first generation products, but I knew I had to take them if I was to live. I’ve had just about all of the side effects at one time or another but some of them included a burning feeling in my stomach, nausea, vomiting, malaise, generally feeling unwell, anxiety, depression, insomnia, peripheral neuropathy, joint and muscle pain, sexual dysfunction, diarrhoea, flatulence and headaches etc. I also suffered a lot of depression and feelings of angst, lost my ability to concentrate and my sleeping and eating was poor. The drugs have improved over the years and the side effects are now less and the drugs are more effective. However, even [in the early 2000s] I still had terrible insomnia and generally felt bad most of the time, at times more dead than alive.
Social and economic impacts of infection
4.211 The Inquiry heard from witnesses how their infection had impacted upon many facets of their everyday lives, particularly work, finances, family life, hobbies and social life.
4.212 Witnesses varied in the extent to which they felt debilitated by their infection. Also as one witness commented, when reflecting on the impacts of their infection: ‘I think that if the interferon treatment had not worked it would have been a whole different ball game’.
4.213 Just over half the witnesses spoke of their difficulties and concerns in the inter-related areas of work, employability and finances.
4.214 Some witnesses described themselves as having had to retire early or being medically retired because of their illness. This had knock-on effects on their finances. Some spoke of lost earnings and final pensions being reduced, or living on a basic pension plus benefits:
We are now in debt and behind with the mortgage. I really do not know what we will do as I do not have a chance of bringing money in. My biggest fear is how we will pay off our debts…I have received two payments from the Skipton Fund but we just had to use this mainly to clear debt.
4.216 Another referred to the loss of a good self-employed income and the reliance on pension credit following early-retirement.
4.217 One of these witnesses, however, reflected that despite all the adversity, the ending of his work career and the sharp decline in his health for a decade caused by Hepatitis C, post liver transplant he was eagerly rebuilding his life.
4.218 For other witnesses, they told the Inquiry that they had to give up work or that they never really had the opportunity to develop a career as a result of their illness. They relied on benefits, or in one case their spouse’s income plus benefits. Those who felt their career never really developed described not only the frustration/feeling of failure that this engendered within themselves but also the financial impact that a lack of stable employment caused in their life:
I rely on Disability Living Allowance, Income Support and Housing Benefit to live. I am not proud of this and would ideally love to carry out full time employment but just can’t work. I have accumulated massive debts, which includes an overdraft and credit cards which I am currently unable to pay off. I get called by debt collectors almost every day. My financial situation impacts massively on my state of mind; it causes me massive amounts of anxiety and can lead to me becoming depressed.
[I] …found myself, at the age of 30 forced to admit that I was not fit for any work. The realisation dawned on us that [my wife] was going to have a disabled husband and that she was going to have to be the breadwinner.
4.219 Other witnesses described having to sell or wind up their own businesses with resulting adverse impacts upon their finances.
4.220 Another witness described how she ran a business with her husband but as she found working difficult her income was extremely reduced which had affected her pension.
4.221 Other witnesses described interruptions in their working lives as a result of their illness and talked of the financial consequences that this had brought about. These included accumulating debts whilst unemployed (which they were still paying off), foregoing bonuses and job opportunities while off sick and temporary loss of a partner’s income who was almost constantly in hospital attendance, taking a reduced position on returning to work, losing out on overtime while coping with treatment and having to pay for others to cover their work duties whilst undergoing treatment.
4.222 Other witnesses told of retraining to be self-employed but still being left in relative poverty as their health did not permit them to see a large number of clients per week, and of facing redundancy in the near future with the worry over their re-employment with Hepatitis C.
4.223 One witness, whose redundancy left her reliant on her husband’s income and State benefits, expressed concern and suspicion that her redundancy had been a reaction to her Hepatitis C and need for sick leave.
4.224 Another witness told the Inquiry that she could not work because of her long-standing joint pain and fatigue.
4.225 One witness commented that she would have liked to have worked and paid off a mortgage but was not physically able to work after her blood transfusion. She reflected that her symptoms following her transfusion had been related to Hepatitis C.
4.226 Three witnesses told the Inquiry of difficulties they encountered in accessing or being assessed for State benefits and the added distress this brought to them. One witness commented:
…I had to apply for disability benefits, which from the very beginning has been a horrendous experience of harassment, incompetence and humiliation despite each department having the full cooperation of my GP and myself. As my symptoms worsened my GP regarded me unfit for any work even on a part-time basis. Medical assessments at DWP offices and at home have often been degrading and to illustrate this I will mention only one occasion as to go into any more detail is too upsetting. During the first medical the DWP doctor asked me to remove my clothes, produced a measuring tape to find the length of the scar from my abdominal surgery and then dismissed me without speaking and I left the offices knowing every last shred of dignity had been stripped away.
4.227 Just under a half of witnesses spoke of the strain their infection had placed upon family relationships, with a number considering that their illness contributed to the break-up of their marriage/relationship. Others described their spouses becoming ill.
4.228 The impact the infection and treatment had upon their children was also something else that witnesses had to deal with. Impacts ranged from feelings that the witness had missed out on their children growing up, or their relationship had been dormant or strained during periods of illness, or that the witness felt that they could not develop interests with their children as they had previously done, to fears that their children had been permanently traumatised by events:
It caused…my children to become traumatised. My youngest daughter managed to stay calm but my eldest daughter did not handle things so well. She has suffered panic attacks and required psychological treatment.
Telling [my young daughter] that I was going to die and watching her face is something I will never ever forget. My wife and I have no idea of what she was thinking during this time but I can only imagine. She never talks about it and we will never ask.
[B]ut in their teenage years their lives were shaped by the anxiety of seeing their mother in extreme pain and suffering and they had to endure the worry of test results and hospital admissions. In their final years at school they both experienced emergency ambulances coming to the house on a number of occasions.
Both my children suffered from depression in their teen years.
4.229 Two witnesses also reflected that their health had affected their ability to travel and see their grown-up children.
4.230 Witnesses also talked about difficulties with life, health and travel insurance.
4.231 The main complaint was that travel insurance was more expensive. One witness said he just did not bother with travel insurance.
4.232 Some witnesses said they had managed to obtain life insurance but at an increased premium or could not get life insurance. One witness said that he could not supplement his life insurance.
4.234 One self-employed witness told the Inquiry that he had been unable to get adequate pension cover.
4.235 Another witness spoke of not being able to move homes or job because they would not be able to get new life cover for a new mortgage or a death-in-service benefit which they currently enjoyed.
4.236 One witness had not moved insurance companies because they feared increased premiums.
4.237 One witness said that it was as well that she no longer owned a house as she did not think that she would get a mortgage or life insurance.
4.238 Another witness told the Inquiry that he knew there were lots of things he was uninsurable for and so he did not even try to take out policies.
4.239 A further witness reflected that she could not get a proper insurance policy: ‘
[A]s nobody would touch me”.
4.240 A witness explained to the Inquiry that the only way to get a mortgage was through the Macfarlane Trust acting as guarantor.
4.241 Half the witnesses spoke, in varying degrees, of the impact their infection had had on their social/community life. At the more extreme end of the spectrum, a witness recalled the exclusion they had suffered:
I have not told anyone in the village where I presently live of my diagnosis. When we lived previously in another village I told some friends of my diagnosis. They had children the same age as mine but suddenly they stopped inviting my children to play and there was talk of my children maybe having the virus. We moved to where we live now for a fresh start.
4.242 A number of these witnesses told of the difficulties the infection caused in trying to establish personal relationships.
I think that the biggest impact the virus has had on me is the difficulty it causes in finding a partner…How do you find a woman who wants to be involved with you and have sexual relations when you have a diagnosis like this?
How do you tell someone about these infections? Will they still want you? Do they want children?
In my opinion this is why I remained single and did not progress or encourage potential marriage options. I was a young woman when this happened to me. I did not encourage any long term relationships. You have to draw the risk of transmission of this virus to someone’s attention right away. My confidence to do so was non-existent. I have missed out with the opportunity of potentially raising a family of my own.
4.243 Some witnesses referred to on-going stigmatisation by those in the health professions:
As recently as early November 2009 I had some routine ENT treatment…and the anaesthetist kept asking me about my history of heroin addiction. I am not a drug addict but as soon as Medical staff learn about your past history of Hepatitis C they immediately assume you are a drug addict….
My GP had to sign off the form [for the Skipton Fund]. Even at this point he did not seem to realise why I have this virus. He mentioned that [his other Hepatitis C patients were all drug users]. He did not differentiate my status in that I got this through no fault of my own.
4.244 Another witness noted that expensive hospital equipment is disposed of after treatment, while two commented that they were last on surgery lists because of their infection.
4.245 There were a small number of witnesses who explicitly reported no pressing or significantly adverse impacts of their infection upon their lives.
The Hepatitis C virus has not affected my life a great deal…
…The Hepatitis C virus has not affected my financial situation any more than my haemophilia already had done. I have never been able to get a mortgage or take out a loan.
Having the Hepatitis C virus has not caused a great impact on my life…The virus has not affected my financial situation.
At the present time in my life I don’t feel any different and there have been no adverse effects on my every day life. I am still able to do jobs around the house and garden…
…There has been no adverse financial impact on my life.
Patients’ own medical records
4.246 A number of witnesses raised with the Inquiry difficulties in accessing their medical records or finding that their records were destroyed or incomplete.
In 1993 I tried to recover my medical records as I wanted to know when I was treated and what I was treated with. It took me over a year to get them. I was told that some of my records were lost and I know that other people, in a similar position to me, have been told the same thing.
4.247 One witness told the Inquiry that his wife had worked her way through his medical records:
From the very beginning the doctors or nurses have noted the batch numbers of my treatment but there are about three or four year’s worth of batch numbers missing from the 1980s. Also, in some of my notes bits were blanked out with black marker pen. Where has this information gone? I know that the same thing has happened to other people too. We have all asked about where the missing bits are but the hospital says it does not know.
4.248 One witness told the Inquiry that although he had moved around a lot, his notes seemed to shrink and he doubted that they constituted an accurate record of his treatments and medical experience. He also was concerned that notes from his childhood on the products he received appeared to be missing from the copies he had seen.
4.249 One witness told the Inquiry that he had asked his haemophilia doctor for copies (in 2003) but did not receive any copies from him.
4.250 Another commented that it had taken time to receive her medical records and that she had to seek help to obtain them.
4.251 A witness told the Inquiry that his hospital records from his transfusion in 1984 had been destroyed, which was also the case for a witness whose transfusion was in 1975.
4.252 Another transfusion witness told the Inquiry:
Apparently there are some records from before the time I had my blood transfusion  and some medical records for the period after but chunks of my medical records around the time of the transfusion are missing. I find this suspicious and cannot understand how it could have happened.
4.253 A further transfusion witness told the Inquiry that her medical records from her attendance at the hospital dealing with her Hepatitis C from 1993 to 2000 had been destroyed.
4.254 One witness, who thought that his records were complete, recalled that his parents had filled out log books for two of the hospitals where he had received his haemophilia treatment. He told the Inquiry that one of the haemophilia doctors had asked for all parents to hand in their log books (although his parents did not) and that many of the books had been destroyed.
The relatives’ experiences
4.255 Where patients made a statement, issues surrounding consent to testing for Hepatitis C and/or HIV, delays in being informed of the decision and what patients were told about the infection in the very early days of diagnosis have been dealt with in the patients’ experiences.
4.256 However, the Inquiry also heard from a number of relatives where the patient had died and who, in their statements to the Inquiry, raised these concerns also.
Consent to testing
4.257 In the case of 3 patients, now deceased, the Inquiry heard relatives describe the lack of knowledge on the part of their deceased relative that they were being tested for Hepatitis C and/or HIV. One patient was described by the patient’s children as having died from Hepatocelluar Carcinoma and Hepatitis C in 2009 following the receipt of infected blood through a blood transfusion in 1974. In the two other cases relatives described their husbands as dying from HIV/AIDS, in 1987 and 1992. In both cases their husbands had haemophilia.
4.258 One widow told the Inquiry her husband had no idea that he had been tested for HIV when told of his diagnosis in 1984. They had assumed that his blood tests had been in connection with monitoring his kidney functions.
4.259 Another widow told the Inquiry that her husband had initiated testing in 1986 for HIV. However, she told the Inquiry that correspondence and meetings after her husband’s death, as well as information from medical records, showed that he had been tested for HIV without his knowledge prior to 1986 and that he had also been tested for Hepatitis C without his knowledge shortly before his death.
4.260 Siblings recalled how their mother was told she had cirrhosis of the liver in 1994 following pre-operative blood checks but that there was no connection made with Hepatitis C at the time. When their mother was referred for further liver tests in 1996 she was told that she had Hepatitis C:
This was the first time she was informed of this diagnosis. My Mum had no concept of what this meant nor did she know that they were carrying out tests for this.
Delay in telling the patient about their infection
4.261 Both widows also raised concerns over the delay in telling their husbands of their infections.
4.262 In one case the delay was for six months and the widow recalled that the explanation put forward by the doctors treating her husband’s haemophilia was that there was some confusion between them as to who was to tell the patient.
4.263 In the other case, the widow recalled that her husband had asked (following his being told in 1986 that he had HIV) why he had not been told of his HIV status sooner. The doctor told him:
[T]hat Dr [Haemophilia doctor] did not like telling anyone that they were HIV positive. [The doctor] told [my husband] that you would not be told about your diagnosis with this virus unless you went and asked about it.
4.264 The witness told the Inquiry that her husband was found to be HIV positive in 1984.
4.265 Her husband was never told that he had Hepatitis C prior to his death.
What patients were told about Hepatitis C/HIV
4.266 The relatives of these three patients also raised concern over what their relatives were told in the early days of their diagnosis.
I don’t think anything was discussed with my husband about the risk of secondary infection. I actually requested a meeting with Doctor [Haemophilia doctor] to initiate me being tested. There was no advice or support offered to either of us. I really don’t think the medical people at this time were actually aware of much themselves (diagnosed with HIV 1984).
4.267 Another widow recalled that she did not think the hospital told her husband much about the HIV virus other than it might not develop into full blown AIDS.
4.268 Three siblings described how they subsequently felt about the advice given to their mother (diagnosed 1996), who died from Hepatitis C:
No-one told her that there was a very real possibility that she would get cancer and that her liver could stop functioning properly...In my opinion the diagnosis of Hepatitis C was not treated as seriously as it should have been.
4.269 They told the Inquiry of their distress over an apparent lack of any pro-active treatment for their mother’s Hepatitis C.
4.270 This family also reflected that they were never warned about the risk of transmission of Hepatitis C to themselves, despite nursing their mother in the later stages of her decline.
4.271 Relatives told of how the infection and treatment impacted upon family life and relationships.
4.272 The Inquiry heard how relationships with children were affected. Descriptions included the effects of a partner/parent having no energy to deal with family life, or being unusually irritable with children, or of children detaching themselves as they struggled to cope with a parent’s uncertain future.
4.273 One daughter commented:
I have seen my Dad’s health deteriorate over the years…He cannot participate in a lot of family functions and activities and has been unable to go on holiday for a number of years. These are the things I miss most being a family and being able to do things as a family.
4.274 One wife commented:
Because of his chronic fatigue he can no longer take part in the outdoor activities which we previously shared. Because we did these together this has also affected our relationship, my leisure pursuits and what we do as a family…[The children] have to make allowances for his tiredness; be patient when he cannot do things, forgets things or is short tempered.
We missed a lot of our daughter’s life, school concerts, etc. She couldn’t have friends to stay. We couldn’t go to parents’ night and the grandparents became her parents. I feel our daughter has had to grow up so quickly. It was awful having to tell her that we didn’t know how long daddy was going to be here.
4.276 Others commented on how their relative had withdrawn or alienated themselves from wider family.
4.277 Witnesses told of the changes in family dynamics that the infection had brought. Some described how their relationships with a partner had changed as they had to become a carer. Intimacy also suffered.
Stress felt by family members
4.278 Witnesses spoke of how their relative’s illness impacted upon the health of other family members.
4.279 The Inquiry heard of the stress of trying to shield children from the extent of their parent’s illness and treatment. Some relatives described psychological impacts upon the patient’s children.
4.280 Some spoke of the strain of having to try and balance the needs of caring for a sick partner with maintaining as normal a family life as possible.
4.281 Others spoke of their own decline into depression. One witness commented that he knows that his wife feels that she let their son, who is infected with Hepatitis C and HIV, down.
4.282 The Inquiry heard of the worry at seeing how ill partners/relatives became during treatment (including psychologically). One witness described seeing the side effects as worse than having watched other relatives die of cancer; ‘Unless you see someone go through this treatment you cannot understand how horrendous it is’.
4.283 Worry over an unknown future was also spoken about:
My husband’s virus is a constant worry. I feel there is uncertainty about the future.
It is a constant worry. When he is ill, I think ‘is this it?’
Each time he has any investigation, I have become anxious about the procedure and the result.
4.285 Some told of the strain of not telling people about the infection, fearing the stigma attached to it:
I feel that there is still a great deal of stigma associated with people who have been infected and so we decided to tell our immediate family only. We did not want anybody outwith the family knowing. It makes you feel very isolated. There is a constant pressure to keep up appearances.
When [our son] was at primary school a teacher said to my wife that she didn’t know why she should have [our son] in her class as he wasn’t normal. At that time [our son] only had haemophilia. When we found out that [our son] had HIV we didn’t tell anyone because of the stigma attached to HIV.
4.286 Some witnesses told the Inquiry of their distress in administering Interferon injections or watching them being administered knowing the side-effects that would come about from the treatment.
4.287 One witness told the Inquiry of the distress of watching a previously loving relationship between parents become strained.
Stigma of infection
She has always had to explain to treating NHS professions that this is not her fault. She always has to say that she has not taken IV drugs.
The year after my husband died I went into hospital for [an operation].
I mentioned to the doctor…that my husband had been infected with HIV. He was about to take a blood sample and ran out of the room. He returned to the room ‘gloved up’ and didn’t even apologise. (husband died 1987)
4.289 One widow told the Inquiry of her continuing distress over how her husband’s death had been handled:
Another thing that nobody has ever sat down and explained to me was the way [he] was treated when he died. [He] was the kind that had everything sorted out. He had even taken our son aside and told him all the things to do when he died. My son stepped in that day and did everything. [My husband] always asked me to promise that he would not die in hospital. That promise I kept. I nursed him until the end and he died at home. He also asked me to keep him at home after he died until his cremation. When the undertaker came to prepare him I told the undertaker of [his] wish. He said that he would make [him] nice for me and was fine with him staying in the house. I felt that I should tell the undertaker what he had died of. As soon as I told the undertaker, he told me that [my husband] had to be taken away. My son was the one who helped the undertaker put his Dad in a body bag. [He] was taken away and I still, to this day, do not know where he went. My cousin telephoned and asked if I could go and see him. We were told that I would not be allowed to see him…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 (husband died of AIDS in 1992).
 One receiving a transfusion of fresh frozen plasma, platelets and Cryoprecipitate
 Only 1 of the 48 patients was not interviewed face to face. Instead he provided his own written statement after having been sent a copy of the Aide Memoire used by the statement takers in the interviews. 8 of the 30 relative witnesses were not interviewed face to face – 2 received an Aide Memoire before providing their statements, and the remainder provided a written statement without being sent an Aide Memoire
 3 witnesses chose to give their statements at the Inquiry offices in Edinburgh
 8 patients out of 21 – 5 born in the 1940s, 2 born in the 1950s and 1 born in the early 1960s
 23 patients – 22 describing themselves as having or having had haemophilia and 1 identifying themselves as having another rare inherited coagulation deficit
 1 patient was given an initial diagnosis of Christmas Disease in around 1968 although this was subsequently changed
 4 witnesses
 5 witnesses
 5 witnesses
 7 witnesses
 3 witnesses could not be specific as to when they started to receive Cryoprecipitate and/or Factor concentrates.
 13 patients out of 23. 1 of those witnesses started receiving Factor IX in England but started receiving it in 1978 in Scotland. 5 patients recollected the 1980s. 1 of those patients first received Factor VIII in England and received it in Scotland in 1980; 2 recalled the late 1960s; 3 could not be specific as to when they had first received factor concentrates
 17 witnesses. 1 said that although no-one told him about the risks he knew there would always be risks. His wife worked in the medical community and the witness felt he was more aware than others of the risk
 1 of those witnesses told the Inquiry that he was not warned about the risk of contracting Hepatitis C from blood or blood products but did recall being warned about the risk of contracting HIV in 1986 when he underwent a knee operation
 1 was treated in the 1970s with Cryoprecipitate and the other recalled having received plasma, whole blood and Cryoprecipitate
 3 witnesses, whose treatment with concentrates began in 1980, 1982 and 1987. 1 witness recalled that his first treatment was with Factor VIII and that he received Cryoprecipitate during a subsequent hospital admission and that he subsequently received Factor VIII. 1 witness recalled receiving a blood transfusion about half a year after he started receiving Factor VIII. 1 recalled having receiving plasma and Cryoprecipitate previously and Cryoprecipitate on one occasion subsequently
 15 out of 23 patients
 12 witnesses
 9 witnesses
 3 witness
 3 witnesses
 8 witnesses
 4 witnesses all diagnosed with Hepatitis C
 3 witnesses all diagnosed with Hepatitis C
 3 witnesses
 3 witnesses
 4 witnesses, including 1 diagnosed with NANB Hepatitis in 1975
 Of the remaining 4 witnesses, 1 recalled being asked about testing for NANB Hepatitis, in the 1970s and 80s, although he could not categorically state that he was asked about testing on every occasion. He also thought he had been told that he was HIV negative. 1 had been tested with his knowledge in England. 1 could not recall if he was ever told that his blood samples were being checked for HIV or Hepatitis C and 1 statement did not mention the issue of consent
 8 witnesses. The wife of 1 patient who did not expressly raise the issue of delay, noted herself that she was angry that they had not been informed immediately of her husband’s infection with Hepatitis C
 18 witnesses out of 21 witnesses as 2 witnesses were diagnosed with Hepatitis C in England in 1990
 8 witnesses
 7 patients
 6 witnesses
 5 witnesses
 1 witness told the Inquiry that she had received a transfusion of fresh frozen plasma, platelets and cryoprecipitate
 21 out of 24 patients. While no explicit comment is made in 3 statements, 1 of those statements mentioned that the patient queried the need for the transfusion at the time
 12 witnesses. This number includes 2 witnesses whose statements did not make an explicit comment regarding prior knowledge of risks
 7 witnesses. 1 of the 6 also told the Inquiry of receiving a blood transfusion in an emergency situation
 4 witnesses. 1 witness also told the Inquiry of a transfusion in an emergency situation. Excluded from these 4 witnesses is 1 who received a transfusion in connection with childbirth but which has been classified as an emergency situation
 Received the transfusion in 1989
 Received the transfusion in 1975
 This witness was later told he had Hepatitis C when in England
 15 witnesses out of 25
 11 witnesses were told of their infection by their GP. 4 witnesses were told by the hospital
 4 witnesses
 Diagnosed 1998
 Diagnosed 2005
 This witness has been counted among those identified as breaking into a diagnosis of Hepatitis C through their GP
 Diagnosed in 2003 and 2005
 Diagnosed in 2005
 3 witnesses. Donations took place in 1992 , 1995–96 and 1998
 Witnesses found out in 1993, 1995, 1997 and 1998. 2 of those witnesses were told/had their diagnosis confirmed by their GP
 2 witnesses
 11 witnesses
 5 witnesses
 Diagnosed 2005
 Diagnosed 2005
 4 witnesses
 Diagnosed in 1998 and 2007. 1 of the witnesses told the Inquiry that their GP did suggest that the patient’s family be tested
 Occurred in 2008
 Diagnosed 2007
 Diagnosed 2002–03 and 2005
 10 witnesses
 5 witnesses out of 10
 2 other witness’s statements did not raise any particular issues in this regard
 38 out of 48 witnesses. 10 witnesses either did not describe any symptoms associated with their Hepatitis C infection or explicitly said that they had no symptoms or said that they could not be sure if they had any or attributed symptoms to the legacy of treatment for their Hepatitis C. The 38 includes 1 witness where it is not clear whether he attributes his symptoms to Hepatitis C or sees them as the legacy of the treatment for Hepatitis C. Also included within the 38 is 1 witness who explained that his adverse symptom was reactive stress to his diagnosis
 25 witnesses. This includes 1 witness who described being left with chronic tiredness after having been told that treatment had meant that the virus was now dormant. The witness had presented to his GP with symptoms of lethargy, weight loss and jaundice which led to his diagnosis. It also includes 1 witness where it is not clear whether he attributes his symptoms to Hepatitis C or sees them as the legacy of the treatment for Hepatitis C
 8 witnesses
 9 witnesses. This includes 1 witness where it is not clear whether he attributes his symptoms to Hepatitis C or sees them as the legacy of the treatment for Hepatitis C
 2 witnesses
 3 witnesses
 2 witnesses
 9 witnesses
 8 witnesses
 8 witnesses
 5 witnesses
 5 witnesses
 6 witnesses
 5 witnesses
 7 witnesses
 35 witnesses. This includes 1 witness who told the Inquiry that he was given a treatment of pills, although doctors deny he had any treatment
 11 witnesses
 16 patients
 Only 2 witnesses reported minor, brief symptoms and 1 witness did not describe any symptoms from treatment, although he told the Inquiry that doctors deny he had any treatment
 15 witnesses
 15 witnesses
 7 witnesses
 7 witnesses
 4 witnesses
 4 witnesses
 2 witnesses
 12 witnesses and 10 witnesses respectively
 9 witnesses
 11 witnesses
 9 witnesses
 9 witnesses
 5 witnesses
 8 witnesses
 5 witnesses
 6 witnesses
 3 witnesses
 1 witness
 1 witness
 1 witness
 1 witness
 13 patients
 5 patients
 Treatments started in 1994 and 2004
 29 witnesses
 8 witnesses
 3 witnesses
 1 witness
 2 witnesses
 1 witness
 6 witnesses
 3 witnesses
 2 witnesses
 4 witnesses
 5 witnesses
 1 witness
 1 witness
 1 witness
 1 witness
 1 witness
 1 witness
 1 witness
 21 witnesses
 7 witnesses
 4 witnesses
 13 witnesses made references to the impact upon their children or their relationship with their children
 23 witnesses mentioned some negative aspect in relation to insurance
 15 witnesses
 3 witnesses
 6 witnesses
 1 witness
 1 witness
 1 witness
 1 witness
 1 witness
 25 witnesses
 7 witnesses
 3 witnesses
 9 witnesses. A widow, who told the Inquiry that her husband had died from AIDS in 1992, also raised concerns over her husband’s medical records, describing them as not being complete as a number of years in the mid to late 1980s were missing
 5 witnesses. In one case, 2 siblings adopted the terms of their other sibling’s statement
 Her husband was told of his infection with HIV in 1986
 7 witnesses
 4 witnesses
 1 witness
 1 witness
 2 witnesses
 2 witnesses
 4 witnesses
 3 witnesses
 3 witnesses
 4 witnesses
 4 witnesses
 10 witnesses
 8 witnesses
 4 witnesses
 1 witness
 4 witnesses
 2 witnesses
 1 witness
 1 witness
 1 witness