7 May 2025: Panel of Campaigners/Groups - B

It was assumed that the other witnesses would have been locked in a room with advisers, all locked to a screen showing the Inquiry. No doubt, the focus will be on identifying the issues raised and coming up with responses. The list of accusations made already should be enough to cause people with a heart and a brain to squirm and give up on defence mode, instead to shift to a conciliatory stance. We shall see.

Organisational witnesses were next. The first point was the “tsunami” of helpline calls since the Government response to the final report began to sink in. The first topic of the session was the unfairness in the way Hepatitis C infectees are treated and therefore compensated, or not. The direction of travel with the regulations and how they are being applied flies in the face of the lived experience of so many people. The amount of evidence to fit someone to a liver damage stage will exclude many people from commensurate compensation. There is no recognition of the extra-hepatic impacts of HCV, yet these are very commonly the case. To compound the situation, the time passed, the inherent disruption associated with mental health problems, will make it very difficult for people to access the apparently required new evidence.

Miss Richards cited a group of psychologists working with the community, reporting their concerns about how the situation was being taken forward. This was backed up by the witness. The so-called Expert Group came in for especial criticism. There was no haematologist, for example, to ensure the context was corrected. There was no community consultation to evidence the lived experience. There was no transparency at all.

Another group representative witness explained how despite being a national body, they were not invited to take part in the first round of meetings. It was discovered that Lord Howe met with Jonathan Montgomery and stitched up the compensation scheme before anyone from the community was involved. The Cabinet Office denies the assertions that the Inquiry recommendations are being rejected, but these points when raised in meetings are never acknowledged or recorded in the “high level” notes of meetings. “It’s just a set-up, really. The outcomes are already decided”. The meetings were described as ridiculous. The behaviour of Government is seen to be just as wrong as it was reported by the Inquiry in relation to the years of the Contaminated Blood Scandal. Lord Howe’s roll as blocking almost all progress related to infected blood and compensation, while receiving plaudits for his acumen in steering infected blood legislation through Parliament, was especially highlighted as challenging. The Special Category Mechanism (SCM) was rejected in Wales, and never applied in Scotland, but the new scheme is imposing this very restrictive and limiting regimen, which flies in the face of the Inquiry recommendations. The lack of monitoring was also cited as an issue which is not being addressed. This will further detriment claimants who are being asked by IBCA for evidence that does not exist or will not exist. People have provided all the evidence that is available, time and time again. The Inquiry sought to avoid this re-traumatising and time-wasting tactic, for all the reasons being explained by the witnesses.

The next witness highlighted the position of Government not to re-visit the regulations despite them being so fatally flawed by the lack of participation in the development of the tariffs and the secretive nature of the inadequate so-called Montgomery Expert Group. So much of the scheme is wrong. People are still having to watch their loved ones die without compensation, while other bereaved families are being re-harmed as their dead relatives’ lives are discounted as not due recognition and value for the suffering.

A series of communications related to Recommendation 10 (funding for support groups) was reviewed. The matter had been ignored for months, but on the same day the latest hearings were announced, a door was suddenly opened. Then just last week, further attempts were made to make this happen. The Northern Ireland case was also inserted, with the difficulties being highlighted due to other priorities such that Ministers are abdicating their responsibilities to provide resources to a support body helping people who were harmed by the same State now not providing funding to help these people.

An intervention on the Scottish situation in relation to ongoing monitoring was made. The medical profession is clearly seeking to minimise the call to keep monitoring people who they see as “cured”.

On accountability, “Governments being challenged is part of democracy”, yet IBCA was set up as not a real arms-length body because it is accountable to the Cabinet Office, not Parliament. Skipton was “an agent” of the Government, and so is IBCA. IBCA has been described simply as “Skipton on steroids”. Further issues illustrating the puppet-master control of IBCA by the Cabinet Office were listed, for example, in the determination to keep recognised legal representatives away from the compensation process. It is estimated that it will cost £400 million in staff costs for  these new IBCA personnel to replicate the discovery of information that has already been documented by peoples’ lawyers. The same mistakes that were made in setting up and running the Alliance House organisations are being repeated again.

On the issue of the public perception, most people think the matters have all been dealt with. The press and media need to help people to understand all that is still going on.

Thanks were given to the Inquiry for having the foresight to keep the Inquiry open, which was met with a standing ovation.

Miss Richards then introduced a part of the session where panel members were invited to suggest changes to be made to the scheme of compensation. In quick note summary, these included:

1. There needs to be more speed.

2. More empathy is required as they carry out their work.

3. There must be more and earlier involvement from lawyers.

4. They need to stop playing games with peoples’ mental health.

5. “It is like trying to nail custard to a wall” to get them to listen, and this needs to change.

6. The scheme is not fit for purpose and the Government must listen more to the community and not so much the civil servants.

7. Genuine transparency and consultation are needed.

8. The deeply flawed regulations must be amended.

9. Excluded groups, particularly the living infected, must be recognised immediately, treated fairly, including for interim payments and access to monthly payments.

10. There must be parity between the viruses, including the simplicity of HIV access being applied to Hepatitis. The excellent posters from the Contaminated Blood Campaign (CBC)  illustrating the different treatment between viruses starkly demonstrates the rank unfairness.

11. Everything must be simpler and streamlined.

12. The muddle of the complicated severity bandings must be removed.

13. The lack of extra-hepatic impacts recognition must be corrected.

14. The “estates” terminology must be replaced by referring to people as the “infected deceased”.

15. Affected people will often not get compensation if they die while waiting, and this has to change.

16. Charities and support groups should be paid from the date of the final report publication and at least as long as IBCA is operational.

17. Those who died early must be recompensed for the life not lived and the opportunities they were never allowed to have.

18. The affected must have access to supplementary financial losses coverage since many had to give up work too, and they also suffered mental health detriments.

19. There needs to be a re-evaluation of Hep C tariffs, including non-liver factors.

20. The harms caused by anti-viral treatments must be covered.

21. The need to reinstate support payments lost since 31 March.

22. Affected must be considered valued for their life lost while waiting for compensation that should have been paid years ago.

23. There needs to be a better process to make sure estate payments go to the right people.

24. Children who never achieved whatever their potential was should be compensated for those losses and not ignored as non-achievers.

25. IBCA must become properly independent of Government and be led by a high court judge.

26. Directly challenge the Cabinet Office on its affirmed position of not being willing to change the regulations and tariffs therein, not least due to the lack of engagement and the unsuitability of the so-called Expert Group.

27. Recognise the situation for all bleeding disorder claimants that they will have been infected multiple times with a variety of pathogens that would have a cumulatively detrimental impact on their health and life generally.

28. See the injuries inflicted on people as deliberate acts of negligence with a specific tariff for that harm.

29. Recognise the associated harms of what was done to people and their family, specifically sexual partners, to include amounts for the psychological damages caused.

30. Either, do not make discounts related to ongoing financial support payments, or provide an interest element for the years when payments, had they been made timeously, would have accrued interest and value which has been lost.

31. Registrations should be opened up to more people, including the affected who are not on schemes.

32. There needs to be a detailed timeline, noting that the few target dates set so far have all been missed, so this under-performance must be rectified.

33. There needs to be clarity on what is happening about the memorials.

34. There must be a letter explaining what the compensation is for, as part of achieving justice and not just money for compensation.

35. The Victims and Prisoners Bill includes the possibility of Ministers acting to effect change and this provision should be opened up.

36. All those with power have to be led by the Minister, who has ultimate power, to effect change – with no more blindsiding.

37. The Minister needs to “work with us”, like never before, so we are heard.

38. The tariffs on research have to be reviewed ( to stop them being what was known to have been considered internally as “a token gesture”).

39. Psychotherapists need to have their opinions counted in evidence for compensation purposes.

40. The Minister was no doubt watching the panel at the hearings. He needs to stop the press officers from smoothing over the evidence seeking to hold the Government to account and instead, to begin to properly involve the community in the processes from top to bottom, including on the Board of IBCA.

41. There needs to be IBCA flexibility to make changes and not be tied to the Cabinet Office.

42. IBCA has been “patchwork” and needs a much more clearly set out programme of work.

43. The recognised legal representative must be involved to change the tariffs, starting by giving them the opportunity to “test” the tariffs, the way they would be in an adversarial court setting.

44. We need accountability. The Chair of the Commons Committee is nowhere to be seen, and the APPG has been weakened by the election. The Inquiry has been the only solid body to trust.

45. The way all the other Inquiries have been treated by successive Governments show that the Government must act on the evidence it paid for and the will of the people who responded to the investigations undertaken.

46. The full Inquiry recommendations must be implemented, and the defensive thinking of the civil service must change.

47. Many people could claim now, their evidence is already there, whereas the employment of so many more case workers is just making work for civil servants who need to be seen to be doing things. So, they create work that falls on claimants, doctors, etc.

48. The published numbers show how many people are “stuck in a system”. The existing schemes could easily make the payments since they have the data and processes in place. The case workers can then focus on those not already registered, working with lawyers who know the people.

49. They need to go back to applying the spirit of transparency and candour as asserted by the Chair of the Inquiry.

A short statement from a panel member who could not attend was added to the mix.

50. There needs to be a professional body to operate the scheme and not those who break personal data confidentiality or make significant miscalculations. Supplementary payments must cover for mistakes.

51. Psychology support must be made more secure for the long-term.

52. Extra-hepatic manifestations have to be recognised.

53. Anti-viral treatments have to be recognised.

54. Infected and affected family members’ claims should be worked on together.

55. Too many people are feeling stuck in the claims process, and it is felt that the involvement of legal representatives from the start would help a lot.

56. Support organisations need to be funded adequately due to the pressure that is still being putting on them.

57. IBCA needs to have more discretion for individual cases where the tariffs are insufficient.

58. SCM or equivalents should just be an automatic transfer over to the new scheme, not an excuse to require more justification.

59. Parity of awards must be reviewed.

60. Hepatitis B must be recognised now.

61. The Government must not profit from delaying any further.

The Chair had no additional questions, but he congratulated the panel members for their inputs and the burdens placed on campaigners and group representatives.

(At this point the lunch break was called.)