Introduction and Overview

Bill Wright (left) and John Rice

On Saturday 14 July 2018, members of the Scottish Infected Blood Forum and Haemophilia Scotland met in Glasgow to discuss latest developments and updates around the recently published Clinical Review Group Report into the impacts of chronic Hep C and also the UK-wide Infected Blood Inquiry.

The meeting was introduced by John Rice, Convener of SIBF, and chaired by Bill Wright, Chair of Haemophilia Scotland.

Attendance at the meeting exceeded expectations with some 77 people filling the Buchanan Suite at the Mercure Hotel.

Professor David Goldberg of HPS (Health Protection Scotland) agreed to discuss the Clinical Review Report in the morning session. Jennifer Cole, O.B.E, the Inquiry Secretary was joined by Michael (‘Mike’) Moore, the newly appointed Lead Investigator for the Inquiry, and they both were to provide an update on the Inquiry’s work and timetable.

 

Clinical Review Report

Professor David Goldberg, Chair of the Clinical Review Group

Professor David Goldberg, who chaired the Clinical Review Group, presented the key findings of the Report and took questions from attending members.

He summarised the methods employed and sources used in obtaining evidence for the report, being the international scientific evidence, the experience of patient representatives and infected/affected people themselves. Indeed, he focussed on the revealing conversations he had had with a random sample of 15 infected/affected people registered on the Scottish scheme, SIBSS. These included two ‘stage 1’ widows.

He detailed each of the 5 terms of reference for the group’s work and revealed the key conclusions and recommendations.

He stated how impressed he was with these meetings and described the infected/affected people, including widows, that he encountered as acting with grace, stoicism, gratitude, sincerity and honesty, in the face of incontrovertible life changing impacts on them and their families as a result of being infected by NHS blood and blood products.

He highlighted the serious impacts experienced by those with chronic/stage 1 disease and the substantial overlap in detriments experienced by stage 1/chronic compared with stage 2/advanced people, and stated that the existing scheme was not fit for purpose when faced with the incontrovertible evidence obtained and sourced from the review. He forcably stated that revisions to the Scottish scheme should address the legacy of impacts suffered by chronically infected and affected people.

The Professor went over in detail the impacts of hepatitis C, and the associated historic treatments, on health, well-being and quality of life, and highlighted notable losses and detriments suffered by victims and their families, including:

  • Loss of ambition and constant worry
  • The debilitating consequences of Interferon/ Ribavirin
  • Restriction on relationships/having a family: self-imposed to protect others
  • Restriction on relationships: imposed by others
  • Difficulties with employment
  • Difficulties in gaining life insurance or a mortgage

He also discussed in detail the mental health problems affecting the overall professional and social functioning of infected people, and their families, including:

  • Lowering of self-esteem and the perception that Hepatitis C has “held one back in life”
  • The stress associated with the perceived injustice of Inquiry and payment outcomes and “failure to get closure”
  • Fear following “viral clearance”
  • Guilt about not disclosing Hepatitis C status and the guilt about having possibly infected others
  • Anger and distress about NHS failures concerning the diagnosis of Hepatitis C
  • Distress of knowing that Hepatitis C infection/disease stemmed from NHS treatment
  • Emotional impact on close family relationships

Accordingly a key recommendation of the Report was that specialist psychological support be made available to all those chronically infected and affected (i.e. family members).

Professor Goldberg discussed the in-depth, open and frank discussions within the Clinical Review Group around the dilemma of the unfairness, impracticality, divisiveness and stress of formal individual assessment on the one hand and the failure of a non-differentiating ”blanket approach” to recognise differences in hepatitis C impact on the other.

Members responded favourably and Professor Goldberg took questions around the apparent inconsistency of treatment of stage 2 and stage 1 widows and the decision-making process of the Clinical Review Group around the 3-tiered self-disclosure mechanism recommended unanimously by the CRG members. He stated there was no appetite for any form of means-testing as this had detrimented the community in the past and had not and could not be implemented in a way that was fair and recognised the mental health impacts endured by many people. There would be no requirement for the applicant to justify the application and the category they declared themselves in. The process would be entirely based on trusting the judgement of the potential applicant. There would be no requirement for a healthcare professional to be involved.  He stated there was still work that was required to be done around the definition of ‘serious’ impacts and that this definition was to be approved by the CRG before being instigated by Government.

The Professor stated that in the context of the available evidence as outlined in the report and the vast collective experience of its members, the Clinical Review Group deemed this approach to be optimal for the following reasons:

  • It has patient and healthcare professional support,
  • It is simple to administer,
  • It aims to ensure that those with the greatest need receive the greatest benefit,
  • It avoids patient/healthcare professional conflict and any need for an (expensive and distressing) appeals process,
  • It reduces stress among applicants to a minimum,
  • It is person-centred recognising that the individual’s perception of hepatitis C is critical,
  • It promotes both individual and collective responsibility and it sends out a loud and clear message saying “you are trusted to make the appropriate declaration” in stark comparison to years of not being trusted.

Other questions included how those who had committed suicide would be treated, the discrepancies in the existing SIBSS policy around country of infection versus country of residence, the unfairness of how the 12 ‘stage 1’ widows had been treated, how long it would take for Government to change the existing system and implement the report recommendations, and if resulting annual payments were to be back-dated in any way. Others commented on the sea change of this approach and findings compared to what were the bitter experiences of decades of mistreatment and the much lamented Penrose Inquiry. Others used words like, ‘radical’, ‘powerful’ and ‘fair’. The unanimous view (minus one) of the meeting was that the report and its findings were welcomed by attendees, some were in disbelief as to how fair the findings were in comparison to how so many people in the past had been made to feel like beggars in a system which degraded them and stripped them of their dignity. It recognised how those who had suffered the inequities (and iniquities) of infection, of NHS (mis-)treatment and Government (mis-)treatment via schemes which had not addressed the true and evident needs of those impacted by this disaster, of schemes which appeared to have more of a focus on budgets rather than fulfilling their moral responsibility/obligation to address the needs and take care of those chronically infected who had been impacted by this disaster in Scotland.

There was some discussion around the possible response of the Scottish Government in terms of the actual numbers involved in an improved financial support arrangement arising from the findings of the Clinical Review Group’s Report. It was recognised that the size of the overlap of deleterious impacts between the “chronic” and the “advanced” groups was certainly greater than the difference, and that members should expect this to be reflected in a “commensurate” package of support.

There was also discussion around the relativity of impacts for the “lower” and “higher” levels of self-declared impacts. It was reiterated that there would be guidance on how these would be described, and that any description had to be approved by the CRG.

Those present were strongly encouraged to write to and/or meet with their MSPs to ensure their support for the Scottish Government to respond in a fair and full way to the Report. Members were informed that the SIBF and Haemophilia Scotland could assist in making contact with elected members.

The Professor closed his part of the meeting by highlighting one of the underpinning recommendations of the report, arising from terms of reference number 5 on the relative impacts of hepatitis C:

“The Group recognises that there is a gap between the awards made to those with and without advanced hepatitis C but is of the view that the extent of the difference between the current awards – a difference which was accentuated by the FRG recently – is inconsistent with the difference between the cumulative past (and future) lifetime impacts of hepatitis C experienced by those with and without advanced hepatitis C.

Food for thought – lunch break at the joint meeting, empty seats leading to full stomachs!

The Group considers that this inconsistency is unfair and inappropriate, and should be addressed commensurately.”

After a lunch break, with food and drink provided by both charities, a more UK-focussed discussion took place around the developing UK-wide Infected Blood Inquiry.

Infected Blood Inquiry

The Infected Blood Inquiry Secretary, Jennifer Cole (JC), addressed the meeting and started by reviewing the Inquiry’s Terms of Reference which had been agreed by the UK Government. She then highlighted the planned timetable of Inquiry activities leading up to the preliminary hearings scheduled for September 2018.

JC discussed the approach decided upon by Sir Brian Langstaff about the use of experts in groups and their valuable input in providing sometimes differing detail that the Inquiry could then test and probe into. She noted that notices of retention/non-destruction of documents and records had already been issued to NHS leaders in England, Scotland, Wales and Northern Ireland.

JC then discussed the handouts she had provided the meeting with on the Inquiry Terms of Reference and Expression of Interest Forms; the purpose of the second item being to give the Inquiry team an indication of the volume and nature of potential witnesses statements and testimonies. This was to aid in their continuing planning processes.

The Inquiry Secretary reminded people to check the Infected Blood Inquiry website regularly for updates, at www.infectedbloodinquiry.org.uk

JC also stated that the 20 July deadline for the Expression of Interest Forms was not a hard and fast deadline and there was flexibility for later returns of completed forms.

Mike Moore (MM) was introduced to the meeting. He is a former Police Officer and had experience of cold case reviews in murder and corruption cases and had been involved in 3 other Inquiries, including the recently completed Gosport Inquiry.

MM reaffirmed how the approach of the Inquiry was not to shirk away from established seats of power and confirmed the Inquiry will operate on the balance of probabilities in an inquisitorial process (not the same as a criminal legal action) although his experience and skills would be brought to bear fully in the inquiry.

MM requested all members of the community to approach him with any and all types of evidence that people think may be appropriate and useful to the Inquiry and reiterated it is the community’s members who hold much of the information they will seek to secure, and these items can provide valuable insights into where other sources of information and evidence might be appropriated from.

Other topics raised included the destruction of medical and other evidence/documents, how the absence of official information/documents can be as telling as the presence of it, the approach of the Hillsborough Independent Panel and their findings, the evidence held by Andy Burnham (former MP and Health Minister and now Mayor of Greater Manchester), the process for taking forward any criminal action after the Inquiry reports (from information revealed during the Inquiry) and how the Crown Prosecution Service and Procurator Fiscal may subsequently take forward prosecutions. There was further discussions around how the Inquiry could compel evidence within the UK but could only request it from those based out with the UK (e.g. pharmaceutical companies based in the US if they don’t have UK offices). The Factor 8 documentary film and Factor 9 theatrical production were highlighted in discussions as were the Freedom of Information (FOI) requests around previous Police investigations in Scotland. One member reminded the meeting that 16 people in Scotland had already died in the last 12 months and how important it was for the Inquiry to salvage and harvest intelligence and information held currently within the community to ensure as speedy an outcome as possible from the Inquiry.

Joel Shaw (JS) from Thompsons Solicitors in Glasgow addressed the meeting around the Legal Representation Form which he had handed out. These forms were to be filled-in, and signed, by the infected as well as affected people, (for example, in the infected person’s household, i.e. how family members and relations have been impacted and affected by their loved one’s infection). The deadline for the return of these forms to Thompsons’s was 19 July to qualify for the ‘fast-track process. Submissions received after this would still be processed but would not be prioritised and qualify for the fast-track process. JS also reminded the meeting that Thompsons had extensive and unique experience of dealing with Inquiries under the 2005 Act, more so than other solicitor firms in the UK. He also said it is important that Scotland retains its own distinctive voice in the Inquiry process, given its unique experience of the Penrose Inquiry, for instance.

 

Close out

The speakers were applauded for their input, their time and honest and candid responses to questions raised and how they had fully engaged with our members who attended. The meeting closed at 4.30pm with a reminder for all members to complete and submit the Thompsons’ Legal Representation Form and the Inquiry’s Expression of Interest Forms by the deadline of 19 and 20 July respectively if at all possible.

 

5 Comments

  1. Anonymous says:

    It was a very positive day, so well done I say to our hard-pressed representatives who continue to give up so much of their time and energies for all of our sakes. For a change we had experts speak to us like adults; honestly, intelligently and respectfully. We were also listened to; thoughtfully, intently and with good grace. We can allow ourselves, at last, to at least prepare to get our hopes up; while retaining in our minds the many past experiences that will surely keep our feet on the ground. Yes, firmly on the ground, but with reason to look forward with a potentially positive expectation, while we wait for the real outcomes in the form of actual money hitting our bank accounts (Clinical Review), and the many perpetrators’ heads hanging in shame (the Inquiry). Do you agree … or not?

  2. Anonymous says:

    Thank you to everyone involved. It has never been more worth my while to sit in a hot and stuffy room because of the words being spoken.

  3. Gillian says:

    Thank you to all who made this meeting possible. It was very interesting and in many senses uplifting. I think Professor Goldberg’s presentation was wonderful and he is soooooo patient and caring . We must all hope that the government listens to him. To me, he has captured to a large extent , the trauma which all of the victims and their relatives have suffered. If nothing else the situation where bereaved relatives were given nothing, will be rectified. They have been treated abominably through no fault of their own.

  4. Catherine Young says:

    Thanks to all for the hard work that was put in to this meeting, I can agree totally with the previous comments, both prof Goldberg and the inquiry team , put my mind at ease.
    The inquiry team seem very approachable, which is so refreshing, but as the previous statement states,my feet are firmly on the ground.

  5. Ricky says:

    Very positive a lot of time and good work put into all this.
    What we must all do is very importantly to visit your local MSP representative and ask their support of the Clinical Review.
    I visited mine and my MSP rep never really knew much about it, it’s up to us to let them know and support us for all the years of suffering and live’s lost.
    It’s urgent support we need from Scottish Members of Parliament.

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