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

Anonymous witness Mr BD suffered an injury which involved a large amount of bleeding and a bad break. After setting the bones the bleeding continued, even into the cast. Scrolling forward to an unrelated issue of an investigation concerning vitiligo and that was when a badly damaged liver and HCV infection was discovered. He knew it amounted to a “death sentence”, and when he asked how long he had, he was told it would be about 10 years. The witness was not suitable for Interferon-based treatments. When the Direct Acting Anti-Viral (DAA) drugs were approved, he was prepared to pay for the Harvoni treatment himself. Just as it was about to happen, it was funded by the NHS. He did receive a successful notification of a sustained viral response.

The HCV infection had a significant impact on the witness. He said it affects every aspect of a person’s life. This included concerns over passing the infection on to his partner and any children they might have. He was also aware of dying relatively young and leaving behind a partner who might have to bring up children on their own.

When he became aware of its existence, an application was made to the Skipton Fund. The only medical record was a sheet from A&E. The application was rejected, and that rejection was clearly ill-informed and mis-directed. He responded in strident but accurate terms. He felt the response had been patronising and simply inadequate. However, the appeal was not successful; although the witness was actually not surprised. He had heard about the high threshold of proof the Skipton Fund wanted, which was often beyond the capacity of many people to achieve.

The witness was asked to reflect on the discussion which had taken place earlier involving the Panel. The witness agreed with the idea of people keeping their records themselves. He also though it was wrong to expect patients to scrabble around to find their medical records instead of the Schemes establishing a conduit directly with the NHS. He recognised the poor quality of record keeping and record securing within the NHS. The witness rejected the reliance on medical records to qualify for support payments when there are so many examples of poor record-keeping practice. Similarly, there needs to be better availability of informed experts which covers the specific health needs of an individual applicant.

The Chair did not have any additional questions.

The witness thanked the Inquiry for giving him the opportunity to tell his story.

The Chair thanked the witness for his courage in speaking with the Inquiry and noted the remaining raw anger in relation to the EIBSS rejection, which the witness mentioned was quite recent.