Gaynor Lewis

The first witness on the final day in Cardiff was Gaynor Lewis. Gaynor gave evidence regarding her husband Haydn Lewis. Haydn suffered from moderate haemophilia.

Haydn was initially treated with Cryoprecipitate and received treatment at the Cardiff Royal Infirmary and Llandough Hospital. Around 1972 he switched to the University Hospital of Wales under the care of Professor Bloom.  In about 1978 his treatment changed to Factor VIII.

Mrs. Lewis told the Inquiry how she recalled in 1985, Haydn receiving a call from Professor Bloom at the University Hospital of Wales (UHW) to go to see him.  Professor Bloom told Haydn that he had become infected with HIV.  Mrs Lewis remembers Haydn returning home in shock.  Professor Bloom had told him that he had maybe, 3-5 years to live. Haydn was not aware that his blood was being tested for HIV.

In the early 1990’s Haydn had been suffering from a pain in his side.  He was told in a ‘matter of fact’ way that he had hepatitis C.

Mrs. Lewis explained to the Inquiry how Haydn and others came to set up the Birchgrove Group to support victims,  and how they would hold regular meetings at the Birchgrove pub for people who had become infected.  Mrs. Lewis explained how the meetings became popular and then welcomed not only infected people but also the affected family members. Haydn was also involved with the early days of the charity Haemophilia Wales.  Mrs. Lewis explained that Haydn was determined to try  to find out the truth of how this terrible tragedy had been allowed to happen and who was responsible.

To the shock of all attending, the Inquiry was shown an exhibit of an exchange of e-mails from the MacFarlane Trust in which defamatory remarks were made about Haydn.  Haydn considered that the MacFarlane Trust did not provide enough financial support for people infected and their families.

Mrs. Lewis told the Inquiry of the stigma associated with HIV and hepatitis C.  She explained of how they had been physically attacked on one occasion.

In 2008 it was discovered that Haydn had a tumour on his liver and required a transplant.  He underwent the transplant in 2009.  However he only discovered that the cancer had returned when he asked for an AFP test.  Haydn Lewis sadly died on 21^st May 2010.

Beverly Tumelty

The second witness on the final day in Cardiff was Beverly Tumelty.  Beverly gave evidence regarding her brother Gareth Lewis.  Gareth was the brother of Haydn Lewis.  Gareth was born with haemophilia A and was infected with HIV and hepatitis C as a result of receiving contaminated blood.

Beverly explained to the Inquiry that Gareth was told that he had become infected with HIV in 1984 and told that his life expectancy was only a couple of years. Gareth was treated with high doses of AZT treatment which compromised his immune system.

Beverly explained to the Inquiry that she is a nurse by profession and had gone through Gareth’s medical notes and records.  She explained that there is no record whatsoever of conversations regarding HIV and hepatitis C within the records and believes that large chunks of the records are missing.

Gareth was an active member of the Birchgrove Group and an active campaigner.

Beverly described the terrible stigma surrounding HIV and hepatitis C to the Inquiry that Gareth had experienced first hand.  She explained how Gareth’s work colleagues would bleach mugs and not use the toilet after him.  Beverly went on to explain that even to this day there is a wariness from health professionals.

Haydn and Gareth sadly died within 7 months of each other. Gareth having suffered a massive stroke in Spain in December 2010.

Sir Brian Langstaff commended Beverly on her bravery and clarity whilst giving her evidence.

Anthony Lane

The fourth witness on the final day in Cardiff was Anthony Lane.  Mr. Lane gave evidence regarding his wife Patricia (Trish) Lane.  Trish was diagnosed with Acute Myeloid Leukaemia in 1985 and became infected with hepatitis C as a result of being given platelets  donated by an AIDS infected donor.  She was tested and told of her hepatitis C infection in 1997. Mr. Lane explained that Trish also contracted shingles which resulted in the loss of eyesight in her left eye. Sadly Trish passed away on the 11^th October 2015.

On the second day of the Inquiry hearings in Cardiff four witnesses gave evidence.

Colin and Janet Smith

The first witnesses of the day were Colin and Janet Smith.

Colin and Janet were discussing their son, Colin. In their evidence, Colin and Janet told the Inquiry how their son was always treated with cryoprecipitate until the late 1970s when his treatment changed to Factor VIII.

It was in the early 1980s that Colin was diagnosed with AIDS just aged 2 years old. Colin and Janet told the Inquiry they didn’t even know Colin was being tested for HIV. In her evidence, Janet stated she confided in a friend about her son’s diagnosis; however this news was passed around the local community.   Colin and Janet described the stigma they faced which included Graffiti being spray painted on their house and Colin losing his job. As well as experiencing terrible stigma, the Inquiry was told that Colin was also bullied in school and as a result moved schools many times.

The Inquiry heard that Colin’s health deteriorated a few years after his AIDS diagnosis. Colin and Janet described their son telling them he thought he was going to die. At the age of 7 Colin passed away.

Concluding their evidence Colin and Janet said they didn’t know where they would be without the support they received from Tainted Blood.

Elaine Huxley

The second witness of the day was Elaine Huxley.

Elaine told the Inquiry that she received a blood transfusion during a hysterectomy in 1976. Following the transfusion she was unwell for around 6 weeks.

For years after the transfusion Elaine gave blood for twice a year for 6 years until she received a letter from the Blood Service advising her that she could no longer donate and should see her GP. In March 1992, Elaine was informed she had viral jaundice and was referred to a liver specialist. Elaine was diagnosed with hepatitis C.

Elaine started treatment for hepatitis C in 2007 following a battle with the hospital who initially said she couldn’t receive this treatment as it was too expensive. Elaine told the Inquiry how the treatment led her to lose her hair, become very thin and experience fatigue. Due to her frequent absences from work Elaine received verbal warnings for calling in sick.

Elaine cleared the hepatitis C virus. She told those in attendance the tremendous guilt she feels as the blood she donated may still be out there and that she hoped the blood service could trace her donations and identify any potential recipients. Sir Brian concluded by telling Elaine her it wasn’t her fault.

Mr AE

The Inquiry heard how Mr AE, a severe haemophiliac, received cryoprecipitate all his life. However he was told a new wonder drug Factor 8 would help his severe haemophilia.

Mr AE discovered he was AIDS positive in 1980 and was never told he was being tested for the virus during blood tests. The Inquiry was told that Mr AE’s consultant told him to keep his AIDS diagnosis to himself. As a result of the diagnosis Mr AE went off the rails and became addicted to opioids. Following his addiction he was admitted to a psychiatric hospital.

The Inquiry was told that in the mid 1990s Mr AE was also diagnosed with hepatitis C. Mr AE described the subsequent treatment he received for this as changing him forever going onto state he has not been the same person since.

Mr AE concluded his evidence by stating he still experiences fatigue and other side effects as a result of this treatment.

Judith Thomas

The final witness of the day Judith Thomas gave evidence in relation to her late husband Christopher.

The Inquiry heard how resilient Christopher was, taking part in water sports and other activities even though he was a haemophiliac. An accident in the late 1980s led to Christopher having his right leg amputated.

A few years later Christopher was tested for HIV.  Judith and Christopher had an anxious two weeks whilst waiting for the results of this test which turned out to be positive.

Judith explained that the HIV treatment Christopher received, AZT, in fact made his side effects worse and he experienced severe stomach problems as a consequence of the drug.

Judith told the Inquiry how she and her husband experienced great support from the Birchgrove Group and the Haemophilia society with them making the long journey from North Wales to attend members meetings with the Birchgrove group. Christopher passed away in 1990 from septicaemia that developed from HIV complications.

Mr AB

The first witness on the final day of the Inquiry’s Edinburgh hearing was anonymous witness Mr AB. MR AB told the Inquiry that his twin sons both had severe haemophilia A.  Mr AB said his twin sons were very active, mischievous and fun.

The Inquiry heard that in the mid 1980s, Mr AB and his wife were informed their twin boys had contracted HIV. Mr AB said that 6 or 7  vials of blood would be taken from the boys but no one would tell them why, Mr AB said he was simply assuming the hospital were testing their iron levels. The boys also later tested positive for hepatitis C.

Mr AB described how each twin was given different treatment for the HIV. One son was placed on AZT and the other on DDI. It then came to light the son who was placed on DDI was involved in trial which he didn’t know about.

Mr AB heartbreakingly stated that the son who was on DDI subsequently was given a high dose of AZT which led to an overdose. By this point he had developed AIDS and stopped growing.

Mr AB’s son passed away in the early 1990s, Mr AB explained that two doctors asked him what the funeral plans were for Mr AB’s son before he had even passed away. Doctors requested a post-mortem was carried out but Mr AB said no. Six months after his son’s death it was a discovered a post mortem had been carried out against the family’s wishes and Mr AB discovered part of his son’s brain had been removed. His son had developed measles on his brain which led doctors to state that if they had known about it they could’ve done more.

Mr AB said his brother had lost his twin and his best friend.

Mr AC

The second witness of the day was Mr AC.

The Inquiry heard how Mr AC, a severe haemophiliac, was told that English factor products were safer than their Scottish equivalent. Mr AC was told in the late 1980s he had an infection known as hepatitis non-a non-b. Mr AC said medical professionals had little knowledge of what this meant at the time.

Mr AC described the psychological effects of the treatment. He said it made him feel socially isolated and left him with recurrent nightmares. Mr AC told the Inquiry that as a haemophiliac many people assumed he had AIDS. He faced stigma for a disease he did not have. Mr AC told the Inquiry that many friends vanished when it was discovered he had hepatitis and that the impact of the virus made it difficult for him to continue with his job.

Mrs AD

The final witness the Inquiry heard from on the final day of the Edinburgh hearings was Mrs AD.

Mrs AD discovered her husband had severe haemophilia shortly after they met. Mrs AD told the Inquiry that her husband received a letter from the Haemophilia Society in the mid 1980s which stated he should use precautions whilst having sexual intercourse. Mrs AD said by this point they had been married 20 years. Following the article her husband wanted himself, their son and Mrs AD to be tested. Mrs AD’s husband’s HIV test came back positive.

Mrs AD told the Inquiry of the terrible stigma her husband faced. On one occasion he gave a family friend a kiss and was told by another family member never to kiss that person again.

Mr AD passed away from pneumonia in the mid 1990s. The AIDS virus was omitted from his death certificate.

In the early 2000s Mrs AD read about haemophiliacs contracting hepatitis C in the 70s and 80s. She told the Inquiry how she had requested her husband’s records and it was found he had tested positive for hepatitis C the year he passed away. This information was never shared with Mrs AD’s late husband.

Sir Brian concluded that the final day of the Edinburgh hearings marked the second anniversary of the announcement that there would be a Public Inquiry into the contaminated blood scandal.

Mr W

The first witness of day two, week two of the Inquiry’s Edinburgh Hearing was anonymous witness Mr W.

Mr W told the Inquiry how his wife received a kidney transplant in the early 1980s. Around three to four weeks following the transplant Mr W’s wife became increasingly unwell, developing lethargy and losing weight.

Mr W described how two years after the transplant his wife continued to feel fatigued which led her to seek medical attention. At the hospital his wife was told she had contracted AIDS. Following this news, Mr W’s wife was told by a doctor not to disclose this information to anyone as he did not want her to be stigmatised. Mr W told the Inquiry that he and his wife told their family that she had cancer rather than revealing the truth.

Mr W explained that not long after his wife was diagnosed with AIDS she was told it had originated from the kidney transplant she had received in the early 1980s. The man who had donated the kidney had been severely injured in a road traffic accident and required a blood transfusion. It was soon discovered this blood transfusion was contaminated with AIDS. Mr W told the Inquiry that five other individuals who had received organ transplants from the same donor went onto contract the AIDS virus.

Concluding his evidence, Mr W stated that he lost his house and developed PTSD following his wife’s death.

Sir Brian said of Mr W’s evidence: “We’ve heard some very disturbing tales in this inquiry. I think few if any can be quite as cruel to the sufferer as the story of what happened to your wife, who went in for a life saving treatment and came out with a  death sentence”.

Christine Norval

The second witness of the day was Christine Norval. Christine gave evidence as an affected person discussing her husband Bruce, a severe haemophiliac.

Christine told the Inquiry that not long after she met Bruce he began to experience symptoms of fatigue and nausea which subsequently interfered with his nursing studies. Not long after experiencing these symptoms Christine and Bruce welcomed their first child and were rocked by the news that Bruce had tested positive for hepatitis C.

Christine explained the dreadful side effects of the Interferon treatment Bruce endured.

The Inquiry heard that Bruce has been a long standing member of the charity, Manor House Group , that has actively campaigned for an Inquiry.

Sir Brian asked at the end of Christine’s evidence what she and Bruce would do once the Inquiry was over. Christine simply said her husband would like to relax and play music in their garden.

Graeme Malloch

The third and final witness providing evidence today was Graeme Malloch.

Graeme told the Inquiry that as a young man he required regular treatment for his haemophilia, with an inhibitor increasing the severity of these bleeds.  He went on to state that he was informed in the early 1980s his haemophilia treatment would be changing to factor products as these were now considered better treatment for haemophilia.

In 1995 Graeme was informed in a letter he had tested positive for hepatitis C. Many years later Graeme discovered a blood test carried out in 1992 had shown he was positive for the virus then. Graeme told the Inquiry how he had not provided consent to be tested for hepatitis C in 1992.

In his evidence Graeme described how as a teenager finding out this news he put on a brave face, but inside he felt as though his life had come to an end.

Graeme described the discrimination he faced whilst being rejected from a job he had previously been offered. He explained, as soon as a medical was undertaken and the hepatitis C was discovered the job offer was withdrawn.

William (Bill) Wright

The first witness of the final day of the first week in Edinburgh was Bill Wright.  Bill spoke of his greatest passion prior to being infected as being the mountains.  Bill has only ever received one treatment of Factor VIII and this was in May 1986.  The day after receiving the Factor VIII Bill was told that he had a 50% chance of contracting non A, non B hepatitis and in turn he was diagnosed with hepatitis C.

Since 1994 Bill has received five different treatments and the first four of his treatments all failed.  Bill described it as him being 4-0 down.  The fifth course of treatment Bill received in 2015 was successful and he described how the treatment has left him with chronic fatigue and he described the effects of this fatigue on his life even today.

Bill spoke of a sense of duty and responsibility he feels, especially as the Chair of Haemophilia Scotland, to allow people to have their stories heard and his belief in the Inquiry.

At the close of Bill’s evidence he stood before the room and spoke of those in the room affected and infected and addressed his concerns to the legal teams of medical authorities and Government his hopes for the Inquiry.  It was a moving statement and the room stood and applauded for Bill’s statement.

Rosemary Wright

The second witness of the day was Rosemary Wright who is Bill’s wife.  She described how, before Bill was infected with hepatitis C, the world was their oyster and with the diagnosis their lives changed.  She spoke of the years of uncertainty, anxiety and fear and how having their hopes constantly dashed was enough to wear them down eventually.

Rosemary spoke of the impact on both her and Bill of the loss of the mountains to them as a couple as they used to enjoy the mountains together and only she is able to do this hobby now.  She described the feeling of there never being a clear road ahead and how they were unable to plan more than 3 months in advance due to the unpredictability of Bill’s illness.

In her closing statement Rosemary spoke of the hepatitis C as a cloud/shadow that has affected different aspects of their lives.  She spoke of her wish for the Inquiry to deal with the issue of communication between patients and doctors.  Rosemary finished by saying that she wants justice and for people to be able to move on and for too many years those infected and affected have been ignored which has added to their distress.

Richard Titheridge

The final witness of the day and of the first week was Richard.  His wife Patricia received a blood transfusion in the early 1980’s and passed away in 2012.

Following Patricia’s blood transfusion it wasn’t until the early 2000’s that she was diagnosed as HIV positive following a large number of tests to establish the cause of her illnesses.  Richard spoke of his memories of Patricia and how the Eileen Trust helped them after her diagnosis.

In his closing statement Richard spoke of his desire for answers to his questions including why the medical records were destroyed, why Patricia wasn’t called back for testing in the 1990’s and his hope that people will get some justice as 30 years is too long.