26 September 2022: Panel on the Skipton Fund and Missing Records - B

The fourth witness had a bad motorbike accident in Norway. It resulted in a very complicated set of injuries which were well treated by the Norwegian health service. His transfer back to the UK highlighted the shortcoming of the NHS by comparison. His injuries were not timeously managed by the NHS despite the recommended timescales indicted by the Norwegian clinicians which caused as many, or more, problems than those from the original accident. These resulted in additional blood transfusions which might not have been required if the NHS had been true to the proposed timescales. He got ill during a work trip to India, but it was put down to him being in India (how patronising of whoever said that). The health problems continued to deteriorate until it became clear his liver was in a very bad way. He was eventually diagnosed as having contracted HCV. The witness was told he had about five years to live. Treatment was apparently available, but too costly for the NHS to pay for. He asked about the cost so he might go private. He was told it was £20,000 but he would not be able to do that either. As a high-performance professional with a good income, this was frustrating. The next option was a trial, but he was not a good fit for the trial criteria (too old, maybe too old to give a positive trial result for the commercial investment in the trial). The worsening illnesses had a very detrimental effect on his senior chemical engineer career, greatly limiting his work and earning capacity. The witness heard about the Skipton Fund via the Hepatitis C Trust. The first application was unsuccessful, despite having confirmatory medical evidence from  the Norwegian clinicians. The English Infected Blood Support Scheme (EIBSS) was not supportive of his application. The problem had mainly been due to missing or destroyed records. It appeared obvious to the witness that one of the UK NHS treatments (or mistreatments) caused the infection. However, with no records to support the assertion, EIBSS maintained their decision.

The fifth witness appeared at the Inquiry to speak about the matter of her sister. An accident caused the sister to require a number of blood transfusions, but she was reticent to discuss her health problems. As well as contracting HCV, she also suffered renal failure and diabetes. The family only found out about the HCV status when papers were discovered after the witnesses’ sister’s death. A taxi driver had been due to take the sister to the hospital for renal treatment, but she was discovered very ill lying on the floor. She had septicaemia, a stroke and bleeding into the colon. The family spent days with the sister in the hospital. However, on one occasion when no family were there, the sister had an unstoppable bleed and the hospital decided to “let her go”. The family were not allowed to view the body. There was no caring interpersonal conversation with medical staff when they turned up after the death. They were simply given the sister’s clothes to take away. The sister had been a model, so the family took some nice clothes for the burial, but they were told it would not be possible to use them. The HCV seems to have caused the significant limitation on a dignified end to her life as well as her death. A Skipton Fund application had been started, but there were problems getting hold of records. A re-application after the sister’s death resulted in a Stage 1 payment, but only after an appeal. A Stage 2 application was refused on the basis of what was on (or not on) the death certificate. The witness elevated the matter of the death certificate since the family knew it was wrong. An appeal to the Parliamentary Ombudsman was not upheld. The witness was a nurse with 30 years’ experience of working in operating theatres. She knew things were not right. There has still been no resolution of the situation.

The sixth witness, an architect, had a nosebleed when in training in 1974. After unsuccessfully trying to stop the bleeding, he was admitted to hospital. He was diagnosed with a rare benign tumour and they managed to get the bleeding under control. The nose bleeding re-emerged soon thereafter and blood transfusions were given as part of the treatment. Further bleeding episodes were due to the re-emergence of the tumour, which was common for the tumour, even though the tumour itself was very rare. The various operations were successful at the times they happened, but the recurring tumour was affecting the facial structure. The witness had been an active person, but these problems had seriously curtailed those types of activities, as well as his work. He discovered his Hep C infection when his business developments required some medical assessments. It showed an enlarged liver which could not be explained. A detailed history and set of examinations were carried out. At that point the connection was made between the blood transfusions and the HCV infection. The witness became quite emotional when rehearsing the events of that crucial period. The anti-viral treatment eventually achieved a sustained viral response (nobody ever used the word “cleared”), but he has been left with a number of serious health impacts. These had clearly impacted on the witness. He had changed from a normally, or even above average, fit person, into someone with no energy, no enjoyment of food, frequent brain fog, and those other all too well-known bedfellows of HCV and its toxic twin treatments. An initial application to the Skipton Fund was rejected. There were difficulties accessing medical records, but what had been secured were forwarded as a re-application, but that was also rejected. The witness decided to use the appeal route. He felt that due to the rare occurrence of the tumour and the high degree of vascular impacts, the decision-makers would not have appreciated the significance of the condition and the resulting need for greater than usual amounts of blood being required to be transfused. The witness sought private confirmation of the particular manifestation of the tumour and received this, along with a large amount of medical literature which backed-up the assertion of blood transfusions being required, thus justifying the application despite the destroyed medical records. This attempt was successful. (This writer suggests that despite the eventual success of this witness in achieving a positive response, it only goes to illustrate that there must be many people who might not have the professional doggedness to advocate to stridently on their own behalf, and so will just live with the scheme rejection and suffer the poverty pathway of a benefits-only (or not even that) life of shortage and restriction.)