SIBF and Haemophilia Scotland have jointly written to the Cabinet Secreatry for Health and Sport, Jeane Freeman MSP, outlining our views on the report’s conclusions and recommendations, and inviting the Minister to meet with representatives from both charities.
The text of the letter is reproduced in full below:
Congratulations on your appointment as the Cabinet Secretary for Health and Sport. Those affected by the contaminated blood and blood products disaster in Scotland were extremely grateful for the close and open working relationship we had with your predecessor and we are looking forward to working with you in the same constructive way.
We are writing today as two of the patient representative organisations involved in the Clinical Review of the Impacts of Hepatitis C: Short Life Working Group. It was agreed at the first meeting of the Group that there would be some information about the patient view of any proposals, for which it would not be appropriate to ask the clinical members of the Group to be involved. Therefore, we agreed to send additional information shortly after the Clinical Review of the Impacts of Hepatitis C: Short Life Working Group Report was published to inform you and the Scottish Government of the specific patient perspective and enable you to respond to the report quickly.
To this end we held a joint, Haemophilia Scotland / Scottish Infected Blood Forum, meeting on Saturday 14th July in Glasgow which Professor Goldberg was kind enough to address. The meeting very strongly supported the conclusions and key recommendations of the report. All of those affected welcomed the recognition in the report of their suffering and the call for additional, and commensurate, support. Some notable comments included welcoming the proposal for self-declaration as a radical and progressive solution which empowers those affected. The approach is seen as being based on respect and trust in stark contrast to approaches which have been taken in the past. Accordingly, it is self-evident there is very strong support from those affected to move forward with proposals based on all the key recommendations of the report.
The elements of the report which are particularly welcomed by affected people are:
- Acknowledgement of the substantial overlap (greater than any difference) in terms of impact between chronic and advanced infection.
- The clear statement that Interferon-based therapies (used between 1994 and 2016 in Scotland) invariably cause major adverse effects which are debilitating over long periods. Too many of our members still encounter healthcare professionals who are not willing to accept this correlation. As the Professor noted at our meeting, “the great majority of stage 1’s will have undergone an ‘Interferon experience’ ”
- Acknowledgement that there can be permanent detrimental and serious ‘side-effects’ of the historic Interferon treatments.
- Acknowledgement that scientific studies report that the chronically infected experience
considerable disruption to daily living, impaired quality of life and chronic physical and physiological symptoms related to HCV.
- Acknowledgement that while physical impacts of hepatitis C on people with chronic hepatitis C may be difficult to characterise and quantify, what is undisputed is the self-perception that hepatitis C was, is, or might have been the cause of such difficulties.
- The compelling evidence from the scientific literature indicating that the mental health, and therefore the quality of life, of people with hepatitis C, regardless of liver disease status, is impaired considerably; this evidence is strongly supported in testimonials given by SIBSS beneficiaries.
- The dominant message from the random-sample of 15 SIBSS members’ testimonials confirming what the community have experienced and been saying for many years.
- Acknowledgement that past incorrect but status-quo medical professional understandings of the virus and the likely impact on people had itself caused more worry with consequent anxiety and distress on chronically infected people.
- Acknowledgement of the ‘acts of sacrifice’ made by infected people to protect spouses in relation to intimate relationships.
- Acknowledgement of the lost lives, marriages/partnerships, homes, careers, jobs, trust and hope experienced by the chronically infected and affected.
- The nature and structure of the 3-tiered self-declaration mechanism recommended in the report.
- Acknowledgement that chronic hepatitis C infection is ‘life changing’ on the infected person and their family members and loved ones.
- Acknowledgement that the infection had ‘incontrovertible’ negative impacts on family, relationships, ambition, employment, financial resources, self-esteem and general mental well-being, reducing the quality and quantity of one’s life.
- Acknowledgement that sharing a life with a chronically infected person means sharing the ‘fallout’ especially in relation to mental ill health and financial and other notable losses.
- The focus on legacy of impacts not just the present condition (after sometimes decades of impacts)
- Their hope that the Scottish Government will take this juncture as an opportunity to lead the way in the UK and put the financial issue ‘to bed’ once and for all and address it ‘commensurately’.
- Acknowledgement of the burden on existing stage 1 widows (12 at present in the scheme) which members perceive as being grossly unfair and morally unjustified.
- Acknowledgement that any assessment which was just clinically-based would ignore the very considerable non-clinical impacts endured by the chronically infected as described in the report.
- The key recommendation stating that the inconsistency in ‘gap’ between financial supports for advanced as opposed to chronically infected and affected people is unfair, inappropriate, and should be addressed commensurately.
- Recommending the roll-out of extended specialist psychological supports for those chronically infected and their family members.
- Hope that the chronically infected people’s situations and the detriments they have encountered and endured will now be taken seriously and that the Scottish Government fulfils its moral obligation commensurately.
While the vast majority of comments were supportive, concerns were raised in relation to:
- Disappointment that the report had not been able to go further in making links between exposure to contaminated blood or blood products and specific health challenges, such as vascular issues.
- Wanting to emphasise that the report was further confirmation that there hadn’t been enough research conducted into the health impacts on those multiply exposed through contaminated blood products since this study had been forced to rely on research involving the wider hepatitis C infected community.
- That wider issues affecting access to the scheme, such as the requirement to have both been infected in Scotland and to have first applied for support while living in Scotland to access the Scottish Infected Blood Support Scheme, were not included in the report.
- That the continual need to campaign for justice and support has been a huge burden on those who have been involved. Had it not been necessary it would have saved the whole community from the impact of ‘hepatitis in the mind.’
- A scepticism that the Scottish Government would be prepared to accept ‘self-declaration’ of impact.
- Whether the amount of ongoing support provided after self-declaration would be sufficient to meet their needs and the legacy impact of the infections.
We believe that this final point is the crux of the issue. We would like to propose that you meet with a delegation of those affected and patient representatives to try and reach a common understanding of the amount of support which would be necessary to fulfil the recommendations of the report. We would also like to respectfully suggest that Gareth Brown is involved in that meeting as he worked with us on the Financial Review Group shortly after the Penrose Inquiry Final Report and would therefore bring an important perspective to the discussion. We would also be very happy for Professor Goldberg to be involved in any such meeting.
Finally, we would like to note our gratitude to the clinicians, and other healthcare professionals, who gave up their time to take part in the Group and engaged with it in such a constructive and solutions-focused way.
We would also like to note our sincere thanks to Professor Goldberg for his chairing of the Group.
We look forward to meeting you and to working together to support everyone affected by the contaminated blood and blood products infections in Scotland.”