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Chapter 4

Experiences of the Patients and Their Families - Witness Statements


4.1 Term of Reference 10 requires the Inquiry:

To examine any particular adverse consequences for patients treated by the NHS in Scotland and their families of infection through blood and blood products with Hepatitis C and HIV, including the treatment offered.

This chapter and the following two chapters will explore the evidence available to the Inquiry from patients and their families about their experiences of the infections and of the impact of these on their lives.

4.2 At the stage of preparation of the Preliminary Report, published in 2010, many patients who had acquired either or both HIV and Hepatitis C infection from blood or blood products, and their relatives, had provided written statements to the Inquiry. Details of how these witness statements were taken are narrated in paragraphs 4.18-4.23 of the Preliminary Report. Seventy-eight witness statements were finalised prior to the publication of the Preliminary Report and these witness statements alone provided the basis for Chapter 4. Since publication, further witness statements have been obtained by the Inquiry. In total the Inquiry has taken statements from 159 patients and relatives relevant to the reference period.[1]

4.3 From these 159 patients and relatives, the Inquiry selected six witnesses to give oral evidence in respect of the effects of infection with HIV, including the effects of treatment, on patients and their families,[2] and seven witnesses to give oral evidence in respect of the effects of infection with Hepatitis C, including the effects of treatment, on patients and their families.[3] The evidence relating to these thirteen witnesses is dealt with in detail in the two chapters that follow this one. The approach used to select these witnesses is narrated in Appendix 1, Inquiry Procedures.

4.4 What follows is a summary of the remaining witness statements (excluding the witness statements of the 13 witnesses who gave oral evidence and their 11 relatives) consisting of the witness statements of 90 patients and 45 relatives. Certain issues were raised by witnesses in the original 78 statements and referred to in Chapter 4 of the Preliminary Report, namely: the information given to patients (or their parents) about the risk of AIDS and about the risk of non-A, non-B Hepatitis, before their treatment with blood or blood products; the tracing and testing of patients who might have been exposed to the viruses through their treatment with blood or blood products; and the information given to patients who might have been infected, or who were found to be infected, and their families. During the oral hearings these issues were explored in evidence as part of the Topics B5 and C5 and the outcome of this is detailed in Chapters 33 and 34.[4] This summary of the witness statements does not rehearse these points but it focuses, in particular, on Term of Reference 10.

4.5 It is not appropriate to weigh individual witnesses' evidence on too fine a scale. Inevitably, some specific accounts might fail to persuade one of the reliability of the evidence on particular points of detail. Taken as a whole, however, the cumulative impression from the evidence is that it has a high degree of coherence and consistency and provides great confidence in its overall reliability. It paints a distressing picture of seriously debilitating and sometimes fatal illness that makes its own impact without further comment in this Report.

4.6 It should not be inferred, however, that every patient infected with either virus has experienced or will experience all of the consequences described. In some cases the diseases have been relatively benign and for some patients infection has been asymptomatic. Treatment is now available that can deal with many of the consequences described, though with side-effects that can themselves be distressing and difficult to manage on an individual basis. Inevitably those who have come forward are individuals with an account of the impact of infection that they wish to describe. Relatively few are motivated to come forward and explain that they have not been affected, or affected to any material extent, by infection. The evidence described is eloquent of what does happen, and what can happen. It does not provide a forecast of what will inevitably happen in every case.

The witnesses

4.7 Table 4.1: Summary of the 90 patient witness statements

Means of infection Witness infected with Hepatitis C Witness infected with both HIV and Hepatitis C Total number of witnesses
Treatment for Haemophilia A 19 2 21
Treatment for Haemophilia B 7 7
Treatment for other blood disorders, i.e. von Willebrand disease and Platelet Storage Pool Deficiency 6 6
Blood transfusion 50 50
Treatment with Immunoglobulin and Anti-Rh antibodies 2 2
Secondary infection 4 4
Total 88 2 90

4.8 The Inquiry is aware that several patient witnesses who provided statements have since, sadly, died.

Summary of the witness statements of the relatives

  • Twenty-nine witnesses were relatives of patients who had also provided the Inquiry with a witness statement. Of those witnesses, 13 relatives made statements about six patients between them, and the remaining relatives gave a statement about 16 individual patients;
  • Seven witnesses were relatives of eight patients (one witness was related to two patients) who acquired HIV and/or Hepatitis C from their treatment for haemophilia. Of these eight patients, three were co-infected with HIV and Hepatitis C from their treatment; one patient had acquired HIV and his relative suspected that he had also acquired Hepatitis C; one patient had acquired HIV and his relative was unaware if he had been tested for Hepatitis C; and two patients had acquired Hepatitis C only. Four of the eight patients had died.
  • Nine witnesses were relatives of eight patients (two of the relatives were related to the same patient) who had acquired HIV and/or Hepatitis C from blood transfusions. One patient had acquired both HIV and Hepatitis C from a blood transfusion, and the remaining seven patients had acquired Hepatitis C from a transfusion. Seven out of the eight patients had died.

The reaction of patients and relatives to diagnosis with HIV and/or Hepatitis C

Diagnosis with HIV

4.9 Invariably the patients who were diagnosed with HIV and their relatives felt fear, and some of them also felt anger. In the mid-1980s the publicity surrounding HIV was horrific and the prognosis for someone diagnosed with HIV was very poor.[5]

4.10 One witness was told, within six months of her haemophiliac brother dying of AIDS contracted from infected blood products, that her seven-year-old son had acquired HIV from his haemophilia treatment. This witness' son subsequently died in 1994, aged 16, of AIDS.

4.11 A mother of a 14-year-old boy described hearing the news that her son had been infected with HIV as being 'like a sledgehammer to the face'. Her son stated that, initially, when he was told his diagnosis, he did not take in the enormity of it. When he did understand his diagnosis he changed from doing fairly well at school to dropping out of school at the age of 16 with no qualifications. He started drinking alcohol and he stated that he was probably an alcoholic by the time he was 18 years old.

4.12 Another patient described the time he was diagnosed with HIV as being 'an extremely stressful time' for both him and his wife due to the poor information available about the virus, and their concern for the future.

Diagnosis with Hepatitis C

4.13 Most of the patients who were diagnosed with Hepatitis C, and their relatives, had not previously heard of the virus. They did not know the implications of it and, in the early years of the emergence of the virus, doctors were unable to provide them with much information about it.[6]

4.14 The patients and their relatives were shocked and upset when the patients were diagnosed with Hepatitis C. They described feelings of disbelief, uncertainty and fear. The lack of certainty about what the diagnosis might mean for the patients in terms of symptoms and prognosis exacerbated witnesses' fears. Many patients believed that diagnosis with the virus meant that they had a shortened life expectancy. When patients and their relatives discovered that the patient had been infected with the virus for a number of years, many believed that this meant that the patient's life expectancy was even shorter. At the same time, for many patients, their diagnosis with Hepatitis C provided them with an explanation for how they had been feeling, some for a long period of time.

4.15 Some patients described experiencing feelings of shame and of feeling 'dirty' as a result of their diagnosis with Hepatitis C. The questions, which many patients were asked by medical professionals at the time they were diagnosed with the virus, may have contributed to such feelings. Many patients were asked if they had abused intravenous drugs, abused alcohol, been promiscuous or had tattoos. One patient, who suffered from obsessive compulsive disorder at the time of her diagnosis with Hepatitis C, stated that after her diagnosis she scrubbed herself until she bled.

4.16 For those patients with haemophilia, who had already endured the outbreak of HIV, being diagnosed with Hepatitis C was a new blow. As one patient stated 'I was flabbergasted. I thought I was going to die. I asked myself when my bad news was ever going to end. We had just come through the highly publicised AIDS scare'.

4.17 A patient described her shock when she was diagnosed with Hepatitis C after previously being diagnosed with HIV, both acquired from a blood transfusion. She stated that it was 'quite a lot to take in'. She felt shocked, hurt and angry. She became hysterical.

4.18 Some patients were very worried that, having been unaware that they had Hepatitis C, they might have infected others, in particular their close relatives. One said:

Discovering I was Hepatitis C positive was a nightmare, a total nightmare. I was devastated at the thought of having potentially infected my wife and children. I was extremely relieved that my wife is negative for Hepatitis C.

4.19 Two patients had given birth to children after acquiring the virus, but before their diagnosis with it. They were both extremely worried that they had passed the virus to their children. The children, who were subsequently tested for the virus, were found to be negative. Another mother worried that she had passed the virus to her daughter when her daughter had attended to a cut on her mother's foot. They both endured an anxious wait for the daughter's Hepatitis C test results, which were negative. A few patients had donated blood while they were unaware that they had Hepatitis C.

4.20 In addition to the worry about having infected family members and others, many patients were concerned about the impact their diagnosis with Hepatitis C would have on their family. They were concerned that their symptoms would mean that they would be unable to care for their family or that they would die leaving their family members to cope without them.

4.21 Some witnesses tried to ignore the diagnosis and others tried to find out more information about the virus themselves. This was difficult for those who were diagnosed with the virus, and for their families, before the advent of the internet. Even after the availability of the internet, not all homes had access to it. Some of the information witnesses found frightened them. A patient who was infected with Hepatitis C stated that she was horrified by information she discovered on a website which told her how to arrange her own funeral and how her body would be treated after her death. She stated that this information 'profoundly affected her'.

Symptoms of HIV

4.22 The natural history of HIV and AIDS, including the signs and symptoms of infection, as now understood, is discussed in Chapter 8, Knowledge of HIV/AIDS Now. This provides a general background to the witnesses' evidence.

4.23 One witness stated that when her son developed AIDS, 'everything focussed on getting [her son] to eat'. Her son did not eat enough and he suffered great weight loss. He developed eye disease and then tunnel vision. This witness stated, 'The worst thing about the whole business was that [my son] gradually went blind. None of the other kids [who attended the same Haemophilia Unit and had AIDS] had this and it made him depressed and vulnerable'. Her son subsequently died of AIDS aged 16.

4.24 Another witness described the decline of his wife before she died from AIDS, aged 51 years. She became weaker over the years and suffered significant weight loss. 'Even the smell of food made her sick' and latterly she was tube fed. She weighed less than six stone when she died.

4.25 A patient who was diagnosed with HIV as a teenager stated that he developed a bad chest infection when he was in his 20s. This required treatment in hospital. When he was in his late 20s he was diagnosed with non-Hodgkin's lymphoma, an AIDS-related cancer. He stated that he now has HIV-related mental health symptoms including dementia and post-traumatic stress disorder. He suffers from violent and aggressive thoughts, poor memory and cognitive processes, flashbacks and sleep disturbance.

4.26 One patient, who was diagnosed with HIV when he was 30 years old and then later with Hepatitis C, has developed type 1 diabetes. He is now insulin dependent. He has been admitted to hospital with diverticulitis (a digestive condition affecting the large intestine), pneumonia and pleurisy. He now has cirrhosis. He has suffered from fluid retention, 'yellow tinges' in his eyes, varices, spider naevi (red veins resembling the shape of a spider beneath the surface of the skin) and encephalopathy (damage to the brain characterised by confusion, cognitive impairment and lethargy). These latter symptoms are attributable to Hepatitis C.

4.27 A witness whose two sons acquired both HIV and Hepatitis C from their haemophilia treatment stated that they had both developed AIDS. One son developed sores on his back, bleeds in his stomach, liver and kidney problems, loss of weight and general weakness to the extent that he could barely walk. His other son also lost a lot of weight and developed arthritis, the latter perhaps due to the Hepatitis C virus (HCV) as opposed to HIV. Both sons suffer from severe depression.

4.28 The wife of a man with both HIV and Hepatitis C stated that her husband's health has deteriorated 'dramatically' over the past 14 years to the extent that he now requires 24-hour care. He has little energy, tires easily and sleeps a lot of the time.

Symptoms of Hepatitis C

4.29 The symptoms of Hepatitis C described by the patients and relatives ranged from no symptoms at all to a number of severe symptoms. Most of the patients reported a gradual onset of symptoms and often, initially, patients thought the symptoms were caused by something else, for example having a young family or working hard. A number of patients stated that they 'did not feel right', highlighting the unspecific nature of the symptoms of Hepatitis C.

4.30 Specific physical symptoms reported by patients and attributed by them to their infection with HCV were:

  • Lethargy, tiredness, exhaustion, reduced physical ability, heart palpitations after physical activity.
  • Night sweats, insomnia, erratic sleep - one witness stated that he would never wake up feeling as if he had experienced a good night's sleep.
  • Little or no appetite, indigestion, nausea, vomiting, weight loss.
  • Anaemia.
  • Jaundice.
  • Discomfort and/or pain in the abdominal area.
  • Irritated and/or itchy skin, skin discolouration, red hands, rosacea, boils, spots, bruising easily.
  • Muscle pain, joint pain, stiffness, cramp, rheumatoid arthritis.
  • Neuralgia and neuropathy (damage to the nerves and nervous system).
  • Headaches.
  • Having a compromised immune system and being prone to infection.
  • Hot flushes, feeling the cold, uncontrollable shaking.
  • Low mood and mood swings, depression, poor concentration, poor memory, poor motivation, irritability, confusion, anxiety and panic attacks, suicidal thoughts, incidents of self-harm.

4.31 The more serious symptoms described by a smaller number of patients and attributable to severe liver disease were ascites (accumulation of fluid in the abdomen), varices (varicose veins), inflammation of the liver and of the spleen, hepatocellular carcinoma and encephalopathy (damage to the brain characterised by confusion, cognitive impairment and lethargy).

Treatment for HIV

4.32 The treatment for HIV, including the development of it over the years, is described in Chapter 9, Knowledge of HIV/AIDS Now.

4.33 The first treatment which doctors prescribed for HIV was Zidovudine (also known as AZT). A witness, whose son was treated with Zidovudine in the mid-1980s when he was eight years old, believes that the start of her son's treatment with Zidovudine coincided with the start of his declining health. She now wonders if he was prescribed too large a dose of the drug. Her son was also treated for eye disease with an intravenous drug which took two hours to administer. He was prescribed antiemetic medication to control nausea. Her son subsequently died. Another witness described how her husband was wary of Zidovudine, having seen a number of his friends and relatives take it and subsequently die. Her husband refused treatment with Zidovudine.[7] He later suffered a psychotic reaction to his treatment with Efavirenz.[8]

4.34 One patient described having to take his antiretroviral medication every four hours. He used to have to wake himself up at four o'clock every morning to take the dose due then. He found this treatment disruptive and upsetting. The same patient stated that there were a lot of 'harsh' side-effects from antiretroviral medication and that this was especially true of the first-generation products. He said, 'I knew I had to take them if I was to live'. The side-effects from which he suffered as a result of his treatment for HIV over the years have included a burning feeling in his stomach, nausea, vomiting, malaise, generally feeling unwell, anxiety, depression, insomnia, peripheral neuropathy (damage to the nerves and nervous system), joint and muscle pain, sexual dysfunction, diarrhoea, flatulence, headaches, depression, anxiety, loss of concentration, poor sleeping and difficulties eating. This same patient was also treated with chemotherapy and radiotherapy for his AIDS-related non-Hodgkin's lymphoma.

4.35 Another patient stated that his treatment with antiretroviral medication has caused a thinning of his bones. As a result of this he sustained a spiral fracture of his femur after falling down stairs. Whilst being treated for this in hospital he acquired an infection with E-coli.

4.36 Another witness' wife was treated with Zidovudine, Didanosine and Immunoglobulin before she died of AIDS. This witness stated that he had 'every praise' for the staff who treated his wife and the care which she received.

Treatment for Hepatitis C

4.37 Further detail about treatment for Hepatitis C is narrated in Chapter 13, Knowledge of Viral Hepatitis Now. In summary, it may include monitoring of a patient's condition by examination, blood tests, ultrasound, CT scan, MRI scan, Fibroscan and liver biopsy and treatment with medication and, if necessary, a liver transplant. The medication to treat Hepatitis C was initially Interferon, then Interferon and Ribavirin and is now Pegylated Interferon with Ribavirin.

4.38 One aspect of treatment for Hepatitis C, which a number of patients commented upon, was the fact that they had to attend the infectious diseases unit of the hospital for their treatment at the same time as those who had become infected as a result of drug misuse. 'Most people attending the clinic had a drug problem. All conversations in the waiting area were about getting access to drugs. This was a complete culture shock to me.'

4.39 Two patients described attending clinic appointments at the same time as heavily guarded and handcuffed prisoners. One patient stated that if the prisoners 'kicked off' they would be seen before her. She found the experience 'uncomfortable'. The other patient found it upsetting attending her appointment at the same time as prisoners. She was also very concerned that someone she knew would see her attending the infectious diseases unit. In fact, one of her work colleagues saw her there and asked her about her illness. She stated that rumours about her then circulated at work.

4.40 A patient who was diagnosed with Hepatitis C in 2009 has described his treatment as chaotic. When his wife phoned the hospital, in 2010, for test results she was told by the doctor's secretary that she had to understand that 'hepatitis was a chaotic illness which meant that it was a chaotic clinic for people with chaotic lifestyles'. The patient's wife said, 'I appreciate it is a chaotic clinic for people with chaotic lifestyles but we are not like that'. A number of patients spoke about their clinic appointments being cancelled.

Medication for Hepatitis C

4.41 It was apparent from the witness statements that a number of factors affected a patient's decision to start treatment with medication for Hepatitis C, and often made the decision about whether and when to start treatment difficult. These factors included the uncertainty about the best time to undergo treatment, the potentially severe side-effects which the medication can cause and the poor prospects of success of the treatment. It was particularly difficult for patients who had no symptoms of the virus, to embark on a course of treatment which might cause them very significant side-effects and which might fail.

4.42 A number of patients chose not to undergo treatment with medication for Hepatitis C. Their reasons for this decision included: believing that the treatment would not help them and might, in fact, make their condition worse; being too scared to start the course of treatment; and a concern that the medication would worsen a witness's pre-existing mental health or physical symptoms. Some patients were required to undergo a psychiatric assessment before being allowed to start treatment.

4.43 Other patients chose to delay their treatment mainly for family reasons, for example having young children or wishing to start a family. Some of these patients then faced a delay when they decided they were ready to start the treatment. This was a difficult period for them and caused them anxiety.

4.44 For some patients starting treatment for Hepatitis C brought home their diagnosis with the virus. One patient stated:

The worst thing about starting the Interferon was it forced me to acknowledge that I had this life threatening virus in my blood. At that point my future was impossible to contemplate and I found myself thinking what music I would like at my funeral. That's how it made me feel. I always felt I was a strong individual and that I could handle anything von Willebrand's disorder threw at me. This was something else, far beyond my control and it loomed over me blocking out the light.

Side-effects of Interferon and Interferon combined with Ribavirin

4.45 Most patients were warned about the side-effects they might experience from their treatment with Interferon and Interferon and Ribavirin but many stated that the treatment was much worse than they had expected. While a few patients experienced some or no side-effects, the majority experienced a number of different side-effects. The impact of these ranged from having little effect on a patient's life to rendering a patient bed-bound and incapable of taking part in work, family or home life. These impacts are described in more detail in paragraphs 4.47-4.49 below.

4.46 Treatment with Interferon was administered by way of injection usually given three times a week. In more recent years, treatment with Pegylated Interferon may be injected weekly. Patients were taught to inject themselves. Some had difficulty with this and either their family members helped them, or they attended their GP's surgery and the treatment was administered there. Some patients took their weekly treatment on a Friday evening in the hope that they would recover from the worst effects of it over the weekend, and be fit for work on the following Monday. Many patients were advised to take paracetamol at the same time as their dose of Interferon and some patients found that this helped the side-effects.

4.47 Side-effects reported by witnesses and attributed by them to treatment with Interferon were:

  • Flu-like symptoms - raised temperature, headaches, sweating, feeling hot and cold, tiredness, lack of energy, loss of appetite, weight loss.
  • Insomnia, disturbed sleep and exhaustion.
  • Nausea, vomiting, stomach cramps, diarrhoea, dehydration (requiring in-patient treatment).
  • Insatiable thirst, change in sense of taste.
  • Depression (requiring treatment with antidepressants), irritability and anger, mood swings, anxiety attacks, confusion, cognitive impairment.
  • Worsening of joint pain.
  • Vertigo.
  • Developing an underactive thyroid (which requires permanent thyroid replacement treatment).
  • Loss of hair.
  • Itchy skin, hardening of the skin and a smell coming through the skin.
  • Uncontrollable shaking.
  • Seizures.

4.48 Additional side-effects reported by witnesses and attributed by them to treatment with Interferon or Pegylated Interferon together with Ribavirin were:

  • Dry skin.
  • Dry mouth.
  • Straightening of the hair.
  • Anaemia.
  • Hypertension.
  • Dizziness and light headedness.
  • 'Riba-rage',[9] panic attacks, disorientation.
  • Constipation.
  • Peripheral neuropathy.
  • Neutropenia (an abnormally low level of neutrophils, a type of white blood cell).
  • Infections, for example dental abscesses.
  • Mouth ulcers, thrush.
  • Vivid nightmares.
  • Palpitations and shortness of breath.[10]

4.49 Examples of other, less common, side-effects experienced by patients were:

  • One patient suffered blood loss during treatment with Interferon and Ribavirin and required a transfusion.
  • Another patient developed septicaemia while being treated with Interferon and Ribavirin. He then developed swelling of his prostate gland which he was told was caused by the septicaemia. His treatment with Interferon and Ribavirin was stopped immediately.
  • Another patient stated that his ALT level increased to four times the level it was prior to treatment.

4.50 Some patients worried about the impact their treatment would have on pre-existing medical conditions. One patient stated that he was unable to take anti-inflammatory medication for arthritis during his treatment as he was unable to eat. Women taking the treatment were strongly advised not to become pregnant during the course of the treatment due to the risk of it causing birth defects or the death of the unborn baby. For the wife of one patient, this meant that there is now a greater age gap between her children than she would have liked.

4.51 The treatment caused a wide range of mental health symptoms for a number of patients and often these were severe. Some patients were prescribed anti-depressant medication during their treatment for Hepatitis C. One patient became severely depressed and started taking an overdose of paracetamol before he was interrupted by a telephone call from his mother. He stated, 'That time felt like a dark hole with no way out'. Another patient described waking up one morning during his treatment and not knowing who he or his wife was. One patient was not allowed to be left alone with her young nephew in case she 'flipped'. Another patient stated:

As well as not feeling well, I felt at risk of blowing up with anger and frustration at small provocation. I tried to avoid getting into any such situation as far as I could. For example, at that time two of our children were at university and the two teenagers were at home, and I avoided anything which might lead to a dispute because I did not trust myself to be reasonable. My wife had to deal with things like that as well as with me.

4.52 Some patients suffered a loss of confidence as a result of the treatment:

I was rarely able to go out. I had to pick my moments to go into shops. Sometimes I drove to the shops but had no confidence to get out of the car and so I just drove home again. A few times I drove when I really was not capable of driving safely as I had tunnel vision and could not see the road properly.

4.53 For many patients their treatment with Interferon or Interferon and Ribavirin was the worst aspect of their infection with Hepatitis C. A number of patients and relatives described the treatment as horrendous:

The side effects of the treatment were horrific. It was the worst treatment I have had in my life and I would never do it again. It was like having the worst flu you can imagine. My immune system became so low I was totally open to infection. I got lots of infections. If I cut myself it took a long time for cuts to heal. I lost the sensation in my feet. My hair fell out, I lost a lot of weight and I looked like a corpse. I regularly collapsed into long stupors of sleep. On a few occasions when my husband came home and found me like this he thought that I had died. I suffered from spinal pain and from pain at the injection site. In the end I chose to stop the treatment due to the side effects.

I took the [Interferon and Ribavirin] treatment for 48 weeks. It was horrific and never again. I have had chemotherapy, a mastoid operation and deaths in the family and other personal stuff but I have never, ever experienced anything like the Interferon and Ribavirin treatment.

After approximately six weeks I began to notice changes in my sleeping and eating habits. I can sleep very easily now when I go to bed at 9.30pm - 10pm, whereas before I was a bit of a night owl, staying up until the early hours watching television, reading etc. Several days a week I feel tired, lethargic, listless, nauseous, uninterested and have no attention span in what is happening around me. Conversations, television and reading all leave me thinking afterwards, 'What actually happened there'. For a short-time I actually felt like hell. I was constantly nauseous, tired, 'wabbit', had indigestion, heartburn and I just lay in my bed suffering and feeling sorry for myself with absolutely no appetite.

4.54 Some patients thought that they or their relatives were going to die during the treatment. One witness stated:

The treatment [Interferon and Ribavirin] my brother had was horrendous .... I do not know how he survived it. I think he should have been hospitalised but he was determined not to go in to hospital. He was very weak and suffered a lot of pain. He was unable to sleep and suffered from "shocks". He lost a lot of weight and was unable to eat. My brother always had someone in the house when he was having a bath as he was so weak. My son, my other brother or another member of the family was always there in case anything happened. I worried throughout the treatment that he was not going to survive it. I have seen my father and a friend die of cancer but watching my brother undergo this treatment for a year was worse than that. It was the worst thing I have ever seen. Unless you see someone go through this treatment you cannot understand how horrendous it is.

4.55 The severity of the side-effects which some patients experienced, and which their relatives observed, caused some to have their dosage of the treatment reduced and others to have the treatment stopped altogether. This caused great disappointment to the patients being treated and their families as the patients faced an uncertain future. Many patients showed great strength and fortitude in managing to continue with their treatment despite experiencing severe side-effects. It was apparent that the hope of ridding themselves of the virus gave patients the motivation and determination to do this.

4.56 For a number of patients and their relatives the treatment was successful. For the patients, this made what they had suffered by way of side-effects worth it. However, as well as their feelings of joy and relief, some patients described feelings of uncertainty and doubt as to whether they had cleared the virus for good or whether it might return. The uncertainty of doctors about this, particularly in the earlier years, is likely to have contributed to these feelings.

4.57 The treatment of a similar number of patients was unsuccessful, in some cases after three or four different courses of treatment. Witnesses expressed their devastation and disappointment about this. The feelings of many patients were exacerbated by the severity of the side-effects they had endured. One mother described her shock at her son's second treatment failing as she 'felt sure there was no way a second treatment would fail. My son suffered two massive blows to his life and future health'. A number of patients stated that they would refuse to take the treatment again due to its side-effects.

4.58 For some witnesses the disappointment of the treatment failing was compounded by the 'false hope' given by blood tests at the end of treatment indicating that a patient had cleared the virus, only for the blood test six months later to show that the virus had returned. One witness described how she felt after her husband's blood tests looked promising:

For the first time ever, I allowed myself to think about life without Hepatitis C and realised all the ways in which it overshadowed our lives like a persistent cloud; uncertainty, anger, long term financial implications, having to decide about and attempt future treatment; what that meant for job prospects and financial security; the ongoing risk of cross infection; the worry of my husband's health declining and what that would mean for my health, my children, my work, our income, our quality of life. When the virus reappeared in his blood soon after the treatment ended I found this extremely hard to cope with because having seen how improved our life would be if we were free of the virus, these hopes were then dashed.

4.59 Some patients described the side-effects of the treatment persisting for some months, even years, after the treatment ended.

I have never recovered from the Interferon treatment. Physically, I looked as though I had aged ten years. My hair turned from black to grey. My back and posture became stooped. My sons thought I looked old. My sister-in-law was flabbergasted when she saw me. She barely recognised me. I never looked nor felt like a young man again. After the treatment ended I never bounced back. I still have to take antidepressants. My depression is not as severe but I still need to take the medication. My wife and I have no sexual relations. For two years this has been getting worse. In my opinion this loss of libido is directly linked to the side effects of Interferon treatment. I try to get out of the house to meet my male friends who all thought I was going to die during the treatment. They are also of the opinion that I aged tremendously after this treatment.

4.60 One patient who suffered from side-effects of Interferon but whose treatment ultimately was successful, described the effect of the treatment as follows:

Luckily by December 1999 I knew that the treatment was working. I suddenly felt better and between December 1999 and July 2000 I started putting on weight and feeling better in myself. I had more energy, my colour improved and I felt excellent. It was as though I had been blind and had just put my first glasses on. I soon realised how long I had been ill for. As I have already said I had got used to feeling ill and had forgotten what being healthy was all about.

Other treatment

4.61 A few patients have undergone banding of oesophageal varices (varicose veins on the oesophagus). One patient stated that a varix burst as he underwent the procedure and he lost four pints of blood.

4.62 One patient who received a liver transplant described how he felt afterwards:

Despite all the adversity I now feel like a 20 year old. I have never felt so well in my whole life. I am building up my fitness. I want to do so many things with my life which were previously denied to me due to illness. Hepatitis C ended my working career and career opportunities. With Haemophilia I always managed to work albeit with occasional absences. Hepatitis C caused my irreparable liver disease and I nearly died due to this. My end stage liver disease made me housebound and highly dependent on others to survive. I had no quality of life for years. Hepatitis C caused a sharp decline in my health from 1997 to 2009. I am keen to rebuild my life by going to night school. I am keen to learn how to play a musical instrument. I want to travel. I got my driving licence back in ... 2009. I now drive to my own appointments at the [hospital]. I have freedom to do these things because I am cured from Hepatitis C induced liver disease. I have energy again. I feel optimistic.

Alternative therapies

4.63 Some patients have tried alternative therapies to alleviate their symptoms of Hepatitis C and believe that these have caused some improvement of their condition. Such therapies include milk thistle, meditation, aromatherapy, vitamin supplements, omega 3 supplements, herbs, acupuncture, tai chi, receiving treatment from a chiropractor, crystals and a healthy diet.

Other impacts of infection with HIV and/or Hepatitis C on patients and their relatives

Personality and lifestyle

4.64 A number of patients described their diagnosis with HIV and/or Hepatitis C and their fear for the future as weighing on their minds. One patient described his diagnosis with Hepatitis C as 'a weight around my neck. It's always there'. Patients have coped with this in different ways but it is apparent that the feelings they have experienced have been exacerbated by the stigma and isolation surrounding both viruses.[11]

4.65 The following are excerpts from a number of the witness statements describing how infection with HIV and/or Hepatitis C had affected patients:

I don't have a life anymore. I exist. The Hepatitis C virus has taken everything. I don't know who [the witness's name] is anymore. I used to be so outgoing. I travelled a lot and was very sporty. I used to enjoy rock climbing, swimming and gardening. I rode a motorbike. I enjoyed socialising. Now I have just one friend. The Hepatitis C virus has 100 per cent changed me. I feel a drain on everyone as I rely on everyone so much. I very rarely leave the house, only really to go to hospital appointments and this has been the case for about the last 10 years.

The impact of my infection with Hepatitis C has been huge. I suppose after all I have been through growing up with haemophilia it was the straw which broke the camel's back.

This diagnosis has changed me completely. I used to be a happy-go-lucky type of person. Now I stay at home and keep myself to myself. I go out once a week on a Wednesday when I go to the bank and pay bills. I keep thinking I am going to die. I cannot get it out of my head. It feels like a life sentence.

4.66 A father stated that one of his sons 'went wild' when he was diagnosed with HIV as a teenager. His son thought that he was dying anyway and so what did his behaviour matter? His other son was also diagnosed with HIV. The family was devastated. Subsequently his sons watched a number of their friends, who attended the same haemophilia clinic as them, die of AIDS. Both his sons suffer from depression and he has had a nervous breakdown.

4.67 The mother of a boy who died from AIDS when he was a teenager stated that her son withdrew from his friends as he became more ill as he thought that 'he was not much company'. She stated that, having been brought up with a brother with haemophilia and then subsequently having a son with haemophilia, she feels as if she has had 'a roller coaster life. I have lived with haemophilia all my life and you always put the sick person first'.

4.68 A mother stated that her son had lost all his confidence since finding out he was infected with Hepatitis C and he did not have a good self-image. Another witness who was diagnosed with Hepatitis C when he was a teenager stated that, had he not been diagnosed with the virus, he would have gone out drinking and socialising more. He stated that his lifestyle would have been different. He was 'very careful' as a single man and did not have any short-term relationships.

4.69 One patient described the change in his lifestyle as a result of his symptoms of Hepatitis C. Before his diagnosis with Hepatitis C he had a wife, a successful career, a house and a boat. Since suffering symptoms of Hepatitis C and the side-effects of treatment he has lost all of these. He is now separated from his wife, homeless and living on benefits. His sister stated that it was embarrassing for him to meet up with his old friends as people remembered him as 'so very generous'. Now he can no longer afford to be generous. She stated that her brother is lonely with no one to share his life with.

4.70 Many witnesses spoke about themselves or their family members being unable to go on holiday or to take part in hobbies or activities which they previously enjoyed, due to being unwell as a result of the symptoms of the virus or their treatment for it. Others spoke of withdrawing from activities due to the fear of infecting others with the virus. A couple of patients with Hepatitis C spoke to feeling left out and conspicuous as a result of being unable to drink alcohol socially.

4.71 Relatives spoke about their worry and concern for their family members who were infected and their fear for the future. The wife of a man diagnosed with HIV stated:

The consequences of what happened to us after [my husband] was told of his HIV positive status are vast and a lot of it is too difficult to tell in this statement. Before being told that [my husband] was infected we were a happy family with everything to look forward to. Life changed to fear, uncertainty, worry and most of all secrecy.

4.72 Relatives also spoke to the changes in patients following their diagnosis with the virus:

It feels like our whole life has been turned upside down. It has left me married to a stranger. The happy-go-lucky person I married is no longer here. Our family life is a lot different now. If we went somewhere and were doing something, my husband used to be loud and lively. Now he can't be bothered. He used to see his brother every Friday night, now he can't be bothered. Even going grocery shopping is an escapade, half way round the shop he feels tired. He is now a crabbit, old besom. Some days he feels very depressed and some days he is too tired to do anything. He sometimes needs help out of the bath and to get downstairs. He is sometimes scared to be alone and wants company, then he doesn't like when he has company. My husband is not interested in anything. His whole life now revolves around sleep and being exhausted. He's like a stranger to folk now.

Relationships and family life

4.73 Many patients described the strain which their own or their relative's infection with Hepatitis C and/or HIV placed on their marriage or relationship. A number of witnesses attributed the breakdown of their marriage or relationships to their own or their spouse's/partner's infection with HIV and/or Hepatitis C. Some patients thought that the implications of their own infection had been too much for their partner to cope with.

4.74 One woman stated that, during their son's illness with AIDS, 'Needless to say our marriage was not important. Both of us focused on trying to keep [our son] alive'. Following the death of their son, she and her husband underwent some courses of IVF and worked at their marriage. Despite having 'a few good years' they are now in the process of divorcing.

4.75 Another witness stated that her husband suddenly started to wash his own crockery and cutlery. He used the same two cups and would not let anyone else use them. He started to wash his own underwear. Then he told his wife to leave and she did so. They separated at that time. Later she discovered (after finding correspondence from the Skipton Fund) that her husband had acquired Hepatitis C. Her husband has since died.

4.76 At the time one patient was diagnosed with Hepatitis C his partner was pregnant. Their baby was born with a cyst on the brain and subsequently died. His relationship with his partner broke up soon after as they were both devastated at the loss of their child and his partner believed, at that time, that the baby's health condition was 'in some way' caused by his Hepatitis C.

4.77 Many witnesses stated that the nature of their relationship with their spouse or partner changed as their spouse or partner became his or her carer or they cared for their relative. Some carers found themselves torn between looking after their spouse or partner on the one hand and the rest of the family on the other. One woman described the impact of her husband's treatment for Hepatitis C:

The treatment and its side-effects have had an impact upon my role as mother and wife. I tried very hard to ensure that my husband's needs and daughters' needs are met. The children sometimes got the brunt of my husband's irritability and mood swings. I had to keep reassuring them and explaining that it was down to the medication. It is most unlike my husband because he is usually such a placid character. It is a fine balance and has been a difficult time. I wanted to keep everything as normal as possible. It was very challenging as I also continued to work full time and was actually awarded with a certificate for 100% attendance for the year. I don't know how I did it. I never said to anyone about the situation. I really struggled to keep upbeat. I confided in my GP about the pressure at home.

4.78 One patient and her relatives described how her treatment for Hepatitis C affected her relationship with her husband in the last few months of his life. Her husband was undergoing chemotherapy treatment while she underwent treatment with Interferon. The side-effects of the Interferon treatment caused her to be short tempered with her husband. She became critical of him and spoke to him with venom. Her son stated that this was not natural and his mother had not spoken to his father like that during 40 years of marriage.

4.79 A patient, who subsequently died after he and his wife had given their statements, described Hepatitis C as having 'destroyed' his relationship with his wife and their sex life. This patient's wife stated:

We don't go out and are unable to make plans. Our relationship has suffered severely. I feel I have gone from being his wife and friend to being his carer. We no longer have a sexual relationship or do anything together as a couple. I find he has become dependent on me for a lot of things, his concentration is not so good and he has lost some of his confidence. I also find it very hard to talk to him and to get him to talk to me. We are like brother and sister instead of husband and wife and I do not see this improving. I feel sad that this has happened through something which was not the fault of [her husband].

4.80 A number of individuals spoke about the impact of HIV and Hepatitis C on their sexual relations. Some stopped having sexual relations with their spouses or partners after their diagnosis with HIV and/or Hepatitis C, for fear of infecting them. One stated that, other than when she and her husband conceived their children, they have had to use barrier methods of contraception at all times as opposed to other methods, like a vasectomy, which are open to their contemporaries. She said, 'We never expect to be free of the fear of transmission'. One patient, having read that the virus could be transmitted sexually, contacted all his previous girlfriends and explained the risks to them.

4.81 One patient stated that he was in denial after being diagnosed with HIV, and he continued to have unprotected sex with his wife. She became pregnant and was advised that the baby could have HIV and would not have a good chance of survival. She underwent a termination of the pregnancy. During this procedure his wife was treated as infectious and kept in a side room in the hospital. This experience was 'devastating' for his wife.

4.82 A number of patients who are not in a relationship spoke of the difficulty in forming relationships when infected with Hepatitis C and/or HIV. A number posed the question, 'How do you tell someone (with whom you would like a relationship) that you are infected with Hepatitis C or HIV?'.

4.83 A husband who acquired Hepatitis C from his wife stated that his marriage came under 'an immense strain' when his wife was advised that they had different sub-types of the virus. They had been together since they were young and he felt that she would be wondering where he had got the virus from if he had not acquired it from her. His wife was later informed that she had two sub-types of the virus and that she had only infected him with one.

4.84 Family members have described watching their relatives suffer from the symptoms of both viruses and from the side-effects of treatment. Some have watched their relatives die, which understandably has had a profound and lasting effect on them.

4.85 Some witnesses spoke of their relative turning to alcohol as a way of dealing with the illness and its impacts. One witness stated that his father's death from Hepatitis C had 'a massive impact' on the whole family. The witness stated that he is now a binge drinker and, since his father's death, he has 'come off the rails' a few times.

4.86 Another witness described the effect on him of his father's illness with HIV and subsequent death. He was eight years old when his father died. He remembered that his father was unable to do much actively with him although he used to take him fishing and told him a story every night. He remembers his father being in hospital most of the last year of his life and visiting him there. He remembers the night his mother told him that his father was dying. He stated 'It was devastating. I didn't see my father again'. His father's death completely changed his relationship with his paternal grandfather who unfortunately became very depressed and died a few years later. His maternal grandfather helped his mother raise him. After his father's death he felt that he was missing out not having a father to put him to bed or to tell him a story. He believes that his mother was looked down on by some people because she was a single parent. He stated that his father was a gifted musician but he never had the chance to learn from him. He would have loved his own children to have known their grandfather.

4.87 Many patients expressed their concern, distress and fears about the effect that their illness has had and may have on their family in the future. Their fears include being unable to look after their family, needing to be looked after by them or dying and leaving the other members of their family to cope. Likewise, the relatives expressed their worries about their family members who are infected with HIV and/or Hepatitis C becoming ill or dying. One mother stated:

I used to worry that my son would not meet anyone to share his life with due to his Hepatitis C. I am so overjoyed that his new wife has accepted him and loves him as he is. They met at University and were close friends first. She is perfect for him. However despite my happiness I cannot stop being worried about the future. I worry about the risk of sexual transmission, the problems they may encounter should they decide to start a family and the worst case scenario of his new wife bringing up a family on her own should he predecease her due to Hepatitis C. They do not have any children and I know that this is probably yet another huge blow to both of them whilst they weigh the risks up, given the risk of sexual transmission of the Hepatitis C virus. This is not something he talks about with his mother, but no doubt he has worried about this also. There remains a lot of uncertainty about his future prognosis.

4.88 Witnesses described the strain on family relationships caused by their own or their relative's illness as a result of HIV and/or Hepatitis C.

When our children were very young they suffered by being separated from me on the numerous occasions I was in hospital. While young they were unaware of the serious health problems I was dealing with, but 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. They cared for me in every way they could but my husband and I did not want them to witness any more of the daily suffering I had to endure or feel responsible for my care .... Today when they visit, they voice their concerns about the large amount of medication I take each day and worry that I may die soon.

4.89 Witnesses described seeing other family members, sometimes their parents, upset as they tried to cope with the full effects of the illness. They also spoke of the patient being unable to contribute to or to take part in family life as she or he did before:

I have seen my Dad's health deteriorate over the years and he has become increasingly dependent on the family to help him do everyday things and assist him attending appointments and GP surgeries. 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. He is not the same person now and I am sure this affects him in many ways. I think it affects relationships and he is concerned about the future, both his and the family.... I know that my Dad becomes frustrated that he cannot do more with [her disabled brother] due to his condition and help my Mum .... I feel that this condition has seriously and adversely affected my life and that of my family. I do not feel that I had a normal childhood due to this....

4.90 One relative described seeing his father lose all confidence in himself during and after his treatment with Interferon. His father suffered depression as a result of this treatment. While this relative was a student, he used to go to work meetings on his father's behalf while his father sat in the car outside. Eventually he stopped going to university for a while as he was so worried about his father. He stated that, at times, he had to be with his father as he was worried he would take his own life. There were periods when his relationship with his father was difficult and now he believes that this was probably due to his father's symptoms of the virus. He stated:

I do not feel good about this now .... It has been totally distressing for me to see Dad like this. I feel so helpless and I find it stressful. I worry about him. It is very difficult to see someone, who you have looked up to and seen as a good role model, go through what he has been through and understand why this has happened.

4.91 A difficult matter for a number of patients was telling their children about their infection. Patients described their children reacting in a range of different ways on being told this - being supportive of the other parent; being scared; worrying in particular that their parent was going to die; becoming very emotional and developing mental illness such as depression and anorexia nervosa. One parent described one of her daughters changing from being an outgoing, successful athlete to becoming a recluse after being told of her mother's infection with Hepatitis C. She also developed myalgic encephalomyelitis (chronic fatigue syndrome, also known as ME) and depression. This parent stated, 'I should be able to look after her but cannot [due to her own symptoms of Hepatitis C]. We have to help one another to get through the day'.

4.92 A number of patients with Hepatitis C are concerned about their ability to have a family, with some believing that this is an option denied to them as a result of their infection. One witness described her and her husband's inability to have children as one of the most distressing impacts of his diagnosis with Hepatitis C. She and her husband both have fertility problems. Her husband has another medical condition. Having unsuccessfully tried fertility treatment they decided to explore the possibility of adoption. Two independent adoption agencies turned them down on the basis that her husband's medical condition together with his infection with Hepatitis C, meant that adoption would not be in the best interests of the child. She found this very hard to take and became very depressed.

4.93 A number of patients infected with HIV and/or Hepatitis C feared that they might pass the virus on to relatives or other persons.

On a day-to-day basis I have to be really careful with my two young sons regarding my toothbrush. When I'm doing anything in the house where I could cut myself I always wear gloves and take extra precautions. Any time I do injure myself I find it very difficult not to panic when my children are in the vicinity. I am very paranoid about passing this disorder on to my children. It is clear to me that there will be many limits to the activities that I can pursue with my children, for example, I have already avoided all contact sports due to the risk of passing on the virus. Many of the feelings I had when I first learned I had Hepatitis C resurface and this can be upsetting.

4.94 One patient stated that she is terrified to give her grandchildren a hug or a kiss in case they catch the Hepatitis C virus from her. Others described keeping their home very clean, using their own glasses and crockery and being very careful around their relatives.

Stigma, secrecy and isolation

4.95 Many witnesses described having to deal with the stigma associated with the viruses as being the worst aspect of the infection. A large number of patients have not told their family members (including close family), friends and colleagues about their infection. The result of this has been that they live their lives with secrecy, sometimes with lies and they have become isolated from family and friends.


4.96 Due to the adverse publicity about HIV in the 1980s patients and their families were encouraged by medical professionals to keep their diagnosis with HIV a secret.

4.97 A mother (whose brother also had HIV) described how she and her husband were 'obsessed' with keeping their son's diagnosis with HIV a secret. One newspaper published an article about HIV with the headline 'Killer Blood' which referred to her brother. This witness and her husband were concerned that their son would be excluded from school if the school became aware that he had HIV, and they did not want the press to start investigating their son. After their son's death, they told people that he had died of leukaemia.

4.98 Another witness whose wife died of AIDS stated that, at her funeral, her coffin was covered with a tarpaulin and the flowers were put on the floor. Following her death his sons changed their names so that their children would not be bullied because of the stigma associated with HIV and Hepatitis C. At the time of his wife's death, he worked part-time as a mechanic. After her death he was told not to return to work because his wife had died of AIDS. He felt that neighbours were talking about him after her death. In her diary this witness's wife wrote about her inability to put her diagnosis with HIV out of her mind due to the constant publicity about it. She stated that the news stories about HIV and 'the way they jumped out of newspapers' did not let patients like her forget that they had the virus.

4.99 One witness stated that, as a result of their secrecy after her husband's diagnosis with HIV, the closeness they previously had with their families has now gone and 'is something that can never be fixed'. She stated that they could not face her family 'because of all the lies' as they had not told anyone about her husband's diagnosis with HIV. They still keep away from their families.

Hepatitis C

4.100 Even today there is ignorance and lack of understanding about the Hepatitis C virus. Some people associate it exclusively with the misuse of intravenous drugs, abuse of alcohol, tattoos and even promiscuity. As a result of the stigma associated with it, a number of patients described feeling ashamed, embarrassed, self-conscious, contaminated and stigmatised by their diagnosis with the virus.

4.101 Many worried how their family, friends and work colleagues would react to their diagnosis and chose not to tell them. This secrecy put a great strain on witnesses and their relatives who knew of their diagnosis.

4.102 A patient who was diagnosed with Hepatitis C when he was 15 years old stated:

My parents worried about the potential prejudice I may suffer from others and so we decided together to only inform the immediate family about Hepatitis C. We did not tell friends and the teachers at school. The pressure upon us to keep the diagnosis secret was, and is still, immense. It is very hard to withhold information about yourself which is so personally consuming. The pressure to conceal this diagnosis continues to be a source of pressure to this day for me, my wife and my family. Some of my closest friends know about my haemophilia but I have never discussed Hepatitis C at any time. A constant source of worry for me is if my employers should find out or have to be informed. Will they understand what Hepatitis C and Haemophilia are? Will they be prejudiced against me? Will they consider it is some way deceitful of me that I have never told them despite no compulsory medical disclosures ever having been required?

4.103 Some witnesses have experienced adverse reactions of family and friends to their diagnosis with Hepatitis C. One witness stated that her husband, who died as a result of his infection with Hepatitis C, was embarrassed by his diagnosis with the virus and did not wish anyone to know about it. His children found out about it when he started treatment with Interferon. One of his children stopped bringing his own children to their house and would not allow the witness to hold her grandchildren even although she did not have Hepatitis C. She stated that she should have had a close and meaningful relationship with her family but she has now lost contact with them as a result of her husband's infection with Hepatitis C.

4.104 A patient, who lived in a small village, told a friend of hers that she had Hepatitis C. Their children were friendly but suddenly her friend stopped inviting her children to play and there was talk of her children having a virus. This patient and her family moved to a different village for a fresh start.

4.105 Another patient stated that a relative of his told someone in their local pub that he had Hepatitis C. Rumours then spread that he had HIV. One patient stated:

I want to get people to wake up to the fact that stigma causes more damage than the disease. The stigma attached to the Hepatitis C virus is insidious. I have been most affected by that. Once, due to my condition, I was asked not to make sandwiches for a children's party but to bring crisps instead.

4.106 Some relatives expressed sadness that the patient had found it difficult to tell them about their infection and so had, initially, dealt with their diagnosis alone and without their support.

4.107 A number of patients spoke of being treated differently by healthcare workers due to being infected with HIV and/or Hepatitis C.

4.108 The husband of one patient, who had died, stated that, in the 1980s, 'HIV' was written in large letters on the front of her medical records. Also around the time when she was admitted to hospital, after the nurse found out that she was HIV-positive, her bed and her locker were moved into a side room. Other patients spoke of their Hepatitis C positive diagnosis being recorded in an obvious manner on their medical notes or on blood samples.

4.109 A witness, whose son was diagnosed with HIV in the mid-1980s, stated that after this diagnosis her son's treatment in hospital was different. Her son was always kept in isolation. All those treating him wore gowns and gloves. When her son underwent any medical procedures the doctors wore face masks. Patients with haemophilia and HIV were given bright blue, thick bags to return their treatment refuse to the hospital. She stated that, gradually, those families who used these blue bags started to share their experiences with each other. Very quickly these precautions were applied to all haemophilia patients, irrespective of whether they had HIV or not.

4.110 A patient who is HIV-positive stated that he has been made to feel unclean when he has been in hospital. One doctor would not touch him. In 2010 his GP said to him, 'No one told me you are HIV positive and I have been touching you without gloves on'.

4.111 A number of patients spoke about healthcare professionals making assumptions about their symptoms being due to alcohol or drug abuse:

When I had to deal with nurses and doctors there was a complete lack of sensitivity to how I had contracted Hepatitis C through a blood transfusion. It was always assumed I had a history of drug taking. I eventually broke down one day and said 'I'm being labelled as a drug user'. The doctors and nurses admitted that this was true and it was a very stressful environment for me to attend but there was no support for a patient like me.

4.112 Another patient stated that when he attends hospital and undergoes blood tests for other medical conditions, he always tells the staff that he has Hepatitis C. He stated that some of the staff give him 'dirty looks as if I was a needle-sharing junkie or similar' but that their attitude changes significantly when he tells them that he was infected by a blood transfusion.

4.113 A number of patients stated that when they had undergone medical procedures they were put to the end of the operation list. A patient who underwent a surgical procedure in 2008 stated:

When I was in the ward waiting to go to theatre I reminded the admissions doctor that I had Hepatitis C. Prior to going to theatre I mentioned to a second doctor that I had Hepatitis C. I eventually got to theatre at 4.30pm when someone in the theatre said to me 'You've put the cat amongst the pigeons'. Apparently they had to empty the theatre of all unnecessary equipment and any equipment that couldn't be removed had to be covered in clingfilm because I had Hepatitis C. I eventually got the procedure.

Education and work

4.114 A few patients or their relatives stated that their education at school, college or university had been detrimentally affected as a result of the viruses. This was mainly due to absence as a result of suffering from the symptoms of the viruses or the side-effects of treatment, caring for a relative or worrying about a relative. As a result some patients were unable to complete the course they had started or did not obtain the qualifications they had hoped to gain. This affected their job prospects and career choice. Some relatives of patients provided statements to the same effect.

4.115 Some patients stated that their choice of work, including whether they worked full-time or part-time, were employed or self-employed, the type of work they did and where they worked, was affected by their diagnosis with HIV and/or Hepatitis C.

4.116 A few patients spoke of the difficulty they had obtaining work. One stated that, on numerous occasions, he had attended job interviews at which the prospective employers wished to discuss his medical history. He stated that as soon as he mentioned Hepatitis C these employers believed that he had been injecting illegal drugs. Others were too scared to try to obtain work or a promotion at work as they believed that, in order to do so, they would have to disclose their medical history.

4.117 A number of patients showed great determination in persisting at work even when they were quite unwell. Notwithstanding this a large number of patients and their relatives had to reduce their working hours, change their role at work (often with a drop in salary), stop working or sell their successful businesses as a result of the symptoms of the viruses or the side-effects of treatment.

4.118 This has had numerous consequences for patients and their relatives. The financial impacts are described in paragraphs 4.126-4.139. Many witnesses have suffered stress and worry with regard to their own and their family's finances. Partners and spouses of those unable to work have felt additional responsibility and pressure as the only breadwinner in the family. One witness stated that this weight of responsibility caused her to become anxious about her own health in case she became unable to work. She also felt constantly insecure about the future.

4.119 A number of patients described how devastated they felt at the loss of a job they had loved or relished. One patient described how he had recently been promoted at work to be a skipper. Due to his symptoms of Hepatitis C and the side-effects of the medication taken to treat it, he had had to stop work and was now unfit for this role. He stated:

This has been totally devastating for me. Your whole life you aspire to be something and then you get there and they take it away from you so easily, you are so easily replaced. My Dad would have been so proud of me being a skipper. I have spent down time crying about this. Also I have never been off work this length of time and it is killing me. I have worked since I left school and have never been idle. I don't do sitting about. It is very hard to fill the day although I like reading.

4.120 Another patient who has haemophilia and Hepatitis C stated that, when he was young, his GP told his mother that it was unlikely he would ever work due to his haemophilia. This patient was determined to work and, at the age of 17, he found an apprenticeship in an ironmonger's shop. He stated:

It was not the safest working environment but I was so happy and excited to be able to work. I managed fine. Sometimes I worked all day with my knee swelling up due to a bleed and then I would go, by bus, to [...] Hospital in the evening for treatment.

4.121 He managed to keep working until he was nearly 40 years old when he had to stop due to his symptoms of Hepatitis C.

4.122 Many patients were reluctant for their employers to find out that they were infected with HIV and/or Hepatitis C for fear of jeopardising their employment or their future career prospects. A patient with HIV and Hepatitis C was asked to provide his employers with a copy of his medical records and to attend an assessment by a doctor after his health took a turn for the worse. He did not wish his employers to know that he was infected with these viruses and so he gave up work. Around this time, he was told by the consultant treating his HIV that he might only have a few more years to live so he should enjoy them. He stated that this was a very stressful time as he and his wife were unsure how they would manage financially.

4.123 Another patient stated that she was very keen to work and had greater earning potential than her husband. Due to her symptoms of Hepatitis C, she was unfit for work for a period of six months. Before her return to work she was sent for a medical examination by her employers. She stated that there was no confidentiality and she was ostracised once her employers knew that she had Hepatitis C. She was made redundant and her role was filled by someone from a different office. She found this whole experience 'extremely upsetting'. Another patient stated that she lost her job as a cleaner at a school as she was considered a health and safety risk due to her infection with Hepatitis C. She stated, 'I loved my job and really miss it'.

4.124 A patient, whose employers are unaware that he has Haemophilia and Hepatitis C, stated that this is 'a huge worry for him'. He is concerned he may become unwell at work and his employers will not know what his underlying conditions are.

4.125 On the other hand, a number of patients spoke of having confided in colleagues or managers at work about their condition and having been helped by them, for example, by being given less strenuous roles at work.


4.126 It is apparent from the witness statements that the financial impact of patients' infections with HIV and/or Hepatitis C has been significant both for the patients and their families.

Loss of earnings, pension and savings

4.127 A number of patients stated that they had lost substantial earnings as a result of having had to reduce their working hours or stop working altogether due to their symptoms or to the side-effects of treatment. Some had moved to a less well paid role in order to be able to continue working and others had stopped working overtime. A number of patients stated that they had not tried to gain promotion or to obtain a new, better paid job because of their condition and so they were deprived of the opportunity of increasing their earnings.

4.128 Families of patients who died as a consequence of their infection with one or both of the viruses have been deprived of their relative's financial support. Relatives of those infected also reported having lost earnings as a result of caring for those suffering from the symptoms of the viruses or the side-effects of the treatment, accompanying their family members to hospital appointments or visiting them while they were in-patients in hospital and grieving for their deceased family members after their death.

4.129 Many patients spoke of having been unable to afford to contribute to a pension or to save. Some had made fewer or lower contributions to their pensions than they had planned due to reduced or no earnings. Many witnesses were understandably anxious about how they would manage financially in the future.


4.130 A number of patients highlighted the difficulties they had faced obtaining life assurance, travel insurance, critical illness cover and private health insurance as a result of their infection with HIV and/or Hepatitis C. A large number of patients were unable to obtain any of these, some having applied to a number of different insurers. Some patients had not tried to obtain any of these policies as they thought that they would be unsuccessful due to their infections with HIV and/or Hepatitis C. Other patients were too embarrassed to apply for such cover. One patient stated that he was worried that a refusal of his application for life insurance would go on 'record against [him] somewhere' or that the refusal would filter back to his mortgage lender.

4.131 Some patients spoke of having been able to obtain life assurance and travel insurance but at the cost of increased premiums. A number of patients who were over 50 years of age had obtained life assurance cover which did not require medical information.

4.132 The inability of patients to obtain or increase their life assurance has had a number of consequences for them. A number of patients have been unable to obtain a mortgage or to increase their mortgages. This has resulted in patients renting accommodation instead of buying their own property, remaining in their present home instead of moving to a larger or a more expensive home or obtaining a mortgage without life assurance to cover it. A number of patients stated that their mortgage was in their spouse's or partner's name alone.

4.133 One patient with HIV and Hepatitis C stated that the only way he was able to obtain a mortgage was with the MacFarlane Trust acting as guarantor.

4.134 With regard to travel insurance, a number of patients did not disclose their HIV or Hepatitis C diagnosis to insurers when they obtained their cover. Others obtained travel insurance which excluded cover in respect of their HIV and/or Hepatitis C.

4.135 One patient helped her son buy a car. She applied for insurance to cover the bank loan but was refused this due to having Hepatitis C.

The MacFarlane Trust, the Eileen Trust, the Skipton Fund and the Caxton Foundation

4.136 Most of the witnesses had received payments from the MacFarlane Trust, the Eileen Trust or the Skipton Fund.[12] The MacFarlane Trust has made lump sum payments from the late 1980s to those infected and annual discretionary payments thereafter. The payments made by the MacFarlane Trust to an infected individual and dependents, up to about 2011, ranged between £43,500 (where death occurred before or upon establishment of the scheme) to £150,000-£180,000 for those still living. The Eileen Trust, from 20 May 2009, made flat-rate recurrent annual payment of £12,800, with continuing scope for discretionary payments. The range of payment received by patients and dependents from the Eileen Trust, up to about 2011, ranged from £43,500 (where death occurred before or upon establishment of the scheme) to £80,000-£150,000 to those still living.[13] There are three payments currently available from the Skipton Fund. The first-stage payment is £20,000 for those patients who were infected with Hepatitis C through treatment with NHS blood or blood products prior to September 1991, or have acquired it from someone else who received such treatment. The second-stage payment is £50,000 for those who have received the first stage payment and whose Hepatitis C has advanced to the extent that the patient has undergone or is on the waiting list for a liver transplant or the patient has been diagnosed with primary liver cancer or the patient has been assessed as having cirrhosis or the patient has been diagnosed with B-cell non-Hodgkin's lymphoma. The third payment is for those who meet the criteria for the second-stage payment. It is a payment of £14,574 per year. Many patients and their relatives are of the view that the payments they receive from the Skipton Fund are insufficient. A new charity, The Caxton Foundation, also provides financial assistance by way of grants to individuals who have been infected with the Hepatitis C virus as a consequence of receiving NHS treatment using contaminated blood, blood products or tissues or to their relatives.[14]

State Benefits

4.137 There have been a number of changes to the UK's benefits system during the period of the Inquiry's Terms of Reference and since the witness statements were taken. Infection with HIV and/or Hepatitis C did and does not automatically give rise to an entitlement to state benefits. However, the effects of either virus, whether it be the symptoms, the consequences of these or the consequences of treatment, may result in a person meeting the eligibility criteria for certain benefits. Benefits claimed by patients who gave witness statements to the Inquiry included Income Support, Disability Living Allowance, Incapacity Benefit, Housing Benefit, Council Tax Benefit, Statutory Sick Pay and Pension Credit.

4.138 A number of patients had to claim benefits as a result of their infection with Hepatitis C and/or HIV. This was difficult for many patients who had taken pride in their work and in being self-sufficient. Many patients described having to claim benefits as degrading and humiliating. A few patients described difficulties in the process of applying for benefits and in obtaining the benefits to which they were entitled. Delays in obtaining benefits caused further financial pressure for some patients.


4.139 A number of patients had accrued debt as a result of their infection with HIV and/or Hepatitis C, mainly due to their inability to work. The uncertainty about the future also caused patients and their families to accrue debt: a couple, both diagnosed with Hepatitis C in the early 1990s (the husband was infected with Hepatitis C by his wife) thought that they were going to die. So they gave up work, went on holiday and accrued 'a lot of debt'. Being in debt caused the patients and their respective family great distress and anxiety, particularly as those who were unfit for work had no means to repay their debt. A number of patients were declared bankrupt. Others had their homes and other possessions repossessed. Some patients received financial help from family members in the form of loans or gifts. Many patients were embarrassed by their financial situation.

Additional expenses

4.140 Witnesses spoke to having incurred the following additional expenses as a result of their infection with HIV and/or Hepatitis C:

  • Travel costs and car parking charges incurred attending hospital appointments or visiting a patient in hospital.
  • Prescription charges, the cost of vitamin and mineral supplements and homeopathic remedies.
  • Extra heating and fuel costs (many patients described feeling the cold more than they did before), the cost of extra washing and increased bathing.
  • Employing a gardener, painter/decorator or person to help with DIY, as they were now unfit to do such chores themselves.
  • Increased spending as a symptom of depression.

1 This figure excludes the witness statements taken from the relatives of those whose deaths were specifically referred to the Inquiry under Term of Reference 6. See Chapter 7, An Investigation into the deaths of the Reverend David Black, Mrs Eileen O'Hara, Mr Alexander Black Laing, and Mr Victor Tamburrini.

2 See Chapter 5, An Examination of the Effects of Infection with HIV on Patients and their Families, Including Treatment.

3 See Chapter 6, An Examination of the Effects of Infection with Hepatitis C on the Patients and their Families, Including Treatment.

4 Topic B5a) The information given to patients (or their parents) about the risk of AIDS before their treatment with blood or blood products; b) the tracing and testing of patients who might have been exposed to the virus through their treatment with blood or blood products; and c) the information given to patients who might have been infected, or who were found to be infected, and their families.

Topic C5a) The information given to patients (or their parents) about the risk of non A, non B Hepatitis before their treatment with blood or blood products; b) the tracing and testing of patients who might have been exposed to the virus through their treatment with blood or blood products; and c) the information given to patients who might have been infected, or who were found to be infected, and their families.

5 See Chapter 5, An Examination of the Effects of Infection with HIV on Patients and their Families, Including Treatment, paragraph 5.17.

6 See Chapter 34, An Investigation into the Systems in Place for Informing the Patients About the Risks - Hepatitis C, paragraphs 34.7-34.8.

7 See Chapter 8, Knowledge of HIV/AIDS Now, paragraph 8.36.

8 Efavirenz is a non-nucleoside reverse transcriptase inhibitor used to treat HIV since about 1998.

9 'Riba-rage' is a term used for the intense depression and irritability that some patients taking treatment for Hepatitis C have experienced.

10 See Chapter 13, Knowledge of Viral Hepatitis Now, paragraphs 13.106 and 13.107 for side-effects of these treatments, including the list set out in the SIGN guidelines of the side-effects of Pegylated Interferon and Ribavirin.

11 These are discussed in more detail in paragraphs 4.95-4.113 below.

12 The MacFarlane Trust provides assistance to patients with haemophilia infected with HIV as a result of their treatment with blood products and their families in the United Kingdom ( The Eileen Trust was set up to provide financial assistance to those infected with HIV through a blood transfusion or tissue transfer in the form of small regular payments or one off payments to affected persons. The Skipton Fund ( is a UK-wide ex gratia payment scheme which makes payments to those infected with Hepatitis C through treatment with NHS blood or blood products prior to September 1991 - see paragraph 3.129 of Statistics chapter.

13 Review of Support available to Individuals infected with Hepatitis C and/or HIV by NHS-supplied blood transfusions or blood products and their dependents as a result of Written Ministerial Statement, Department of Health 'Support for those affected by contaminated blood', Thursday 14 October 2010.

14 See paragraph 3.129 of Statistics chapter;

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