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

Counsel shifted the Panel process to a discussion. The first topic was about the difficulties in finding out that the Skipton Fund even existed. The lack of information or support from medical practitioners generally, not just signposting to the Skipton Fund but aftercare generally was mentioned. For example, after years of living with HCV and its consequences, once the “cure” was achieved then the patients were waved goodbye. It was noted that many clinicians did not know about the Skipton Fund. The suggestion was made that the Skipton Fund was not set up to give out money but rather to not cost the Government money.

On being rejected after an application, there was said to be pain attached to not being believed and a bewilderment over what to do next. Skipton was meant to be a support, but it was not a support at all. The personal investment people made in their statements, if then rejected, was devastating. Surely the burden of proof was on the NHS since they were the infecting agent. Their healthcare system caused the original problems, then their record keeping system caused the issue that stopped people being helped to cope with that problem. There was also anger expressed since the sense was that people were being turned down and were left with the unsavoury prospect of being an infectee due to drugs or sex.

One witness asked, “What is the purpose of medical records?” The comparisons with other countries with secure systems and processes, as opposed to the NHS and its scraps of paper and quickly scribbled notes featured in the discussion. Other industries have regulatory oversight, especially when the activity is risky. Why is there not something like that for the NHS? The sense is that the NHS is not a learning organisation. Records allow an individual component in a manufacturing process to be traced back to the worker who made it, so why can such rigour not apply to the NHS?

The decision to reject people due to not having records was felt as very isolating, victimising and depersonalising. Skipton was not there to help people but to protect the Government, some thought. It should have been far more enabling. The balance of proof question needed to be more in favour of the applicant, given the circumstances of how people were infected. The Skipton Fund ought to have had a greater focus on supporting people beyond that of paying (or not paying) money out, including psycho-social support

The communications from Skipton were seen as too standardised and not at all personally applicable. It was as if everyone was treated as a collective and not as a person. It was like the way families were discouraged to be too involved with infected relatives due to that person being referred to as a high-risk case, as opposed to them being a very sick and needy relative who just wanted their loved ones around them. Skipton was not responsive and not adequately connected to the NHS. There were questions over why Skipton did not believe peoples’ treating clinicians, as if these medical professionals were liars themselves. 

Some people were curious as to why the applicants were responsible for gathering the required records, rather than this being done in a direct way through Skipton with all the inherent knowledge of NHS systems being applied. One witness had tried to ask the consultant what happened to the notes and records because they knew there should have been more in the file.

The passing of people between bits of the NHS, and the complication of staff retiring or moving on was seen as detrimental to good record keeping. Too often the record of a single interaction with a part of the NHS in one place, such as during a holiday, did not ever make it to the GP, or anyone else in the NHS who might be interested to know about that incident. The digital era ought to allow for things to be better joined up; everyone has a CHI number, after all. People were amazed to discover that medical records can be destroyed while patients are still living. The question was asked if the system could allow people to decide if their records are destroyed or passed to them.

Final comments from Panel members were to thank people for listening due to it being a very isolating experience to be an infected person. The hope is that Government will not ignore the Inquiry recommendations as has been seen with other Inquiries. There was gratitude for the support providers for their care, time, and believing them. People were grateful for the Inquiry listening and how they treated witnesses. There are still barriers and challenges to be overcome, particularly for those stuck behind missing medical records situations. People have felt inadequate and worried they have not done enough for their loved ones. The hope is that the NHS will learn from what the Inquiry discovers. There were also a number of individual expressions of gratitude to specific people who have helped them. Being involved in the Panel was so very different from engaging with Skipton due to the kindness expressed, the support, the understanding and for the fact of people simply listening. The capacity of the Inquiry to be “helpful” to people was expressed, giving the Panel members a sense of formalised permission to speak about what happened to them. The Cullen Inquiry made a fundamental difference to the industry it related to, and it was hoped that the Infected Blood Inquiry could get the NHS to shape-up and respond appropriately, because it has failed to do so in the case of contaminated blood.

The Chair reflected back to the Panel members what they had said. He thanked them for the courage shown by agreeing to give oral evidence. He contrasted the evidence related to Skipton from the officials and politicians to that of the Panel members. In support of the comments by the Chair and for the whole day of evidence, there was a poignant moment of those in attendance standing to clap and recognise what had been done. They had personified dignity, daring, and determination.

All that remained for the day, after a short break, was the anonymous witness.