SIBF detailed commentary of Financial Review Group Draft proposals

Posted below is a detailed critique from SIBF members of the as then ‘draft’ proposals coming out of the Financial reference Group. The main area of disagreement Forum representatives had was on the lack of parity in treatment of so-called ‘stage 1’ patient vicitms.

 

A Commentary

on the

Contaminated Blood Financial Support Review Group Draft Report & Recommendations

from the

Scottish Infected Blood Forum

 

1. Main Points of Divergence

• The first and preeminent issue we have with the report and recommendation is the retention of what we refer to as the ‘so-called’ Stage 1/Stage 2 distinction. We consider the distinction to be out-dated, unfair and divisive. It is our view that this is a red line issue that must be thought of as a potential ‘deal-breaker’. We believe it is essential to see this as yet unresolved and fundamental issue as a line that cannot be crossed by the patient/victim representatives until it is made right. As such, the absolute need to see the removal of the Stage 1/Stage 2 distinction cannot be stressed too highly.
• The second main issue is the lack of acknowledgement in the proposals of the majority view as expressed by patient victims to see a substantive, full and fair lump sum payments scheme being proposed, at least as an option.

 

Since the matter of Stage1/Stage 2 is so crucial it could be that this Commentary on the report stops at this point, but in good faith and following the course adopted at the Perth meeting (which was itself a matter for lively preliminary debate), we have continued to extend our Commentary to include the other elements of the document. However by providing this Commentary on the fuller content of draft report, this should in no way be seen as acquiescence to the proposals as they currently stand. The constant overriding principle is that the proposals are only worthy of consideration for support once the Stage 1/Stage 2 issue is resolved.

 

2. Name:

• We note that the name of the Review Group has reverted back to include the term “Infected Blood…”. We must insist that the name go back to “Contaminated Blood”.

 

3. Terms of Reference:

• We are very concerned that there is no mention of the broader Terms of Reference and guiding principles document that was tabled and was agreed (after some debate) as a guide to the process, while the highly edited/minimised ToR version as drafted by the Scottish Government representatives is included? We assert that if the fuller ToR document had been followed it would have helped to significantly aid the Group in reaching a more agreeable outcome than is currently being presented. We therefore must insist that for the sake of transparency these fuller ToR also be included as an appendix.
• We believe that the Group has not met one of the core tasks from the minimised ToR, specifically that in its considerations, “… [to include matters of] … eligibility (tests of causation and disability)”. All that has been recommended is that this ‘should’ be looked at again at some unspecified time in the future (which may or may not happen before the other proposals are enacted, thus opening the door to unfairness and discrimination). The issue of extra-hepatic conditions, for example, has not been adequately addressed (even though it came up frequently in the consultation responses). It is now recognised that this ought to be a key component of the eligibility criteria, even based on already established and validated medical research on the subject.
• The Group has not met another of the core tasks from the minimised ToR, namely to, “Consider evidence from affected patients, families and their representatives in relation to … unmet need which could be addressed by an improved scheme.” Despite assurances, infected/affected people have not had the opportunity to properly express the unmet need, in particular the very real financial losses resulting directly from infection.

 

3. Membership of the Review Group:

• Given that peoples’ names will be attached to this report for evermore, we pose the question, ‘do we want to be identified with these recommendations in full?’ and it is for this reason, as a membership organisation, we feel the need to formally present the concern expressed in this Commentary.

 

4. Executive Summary

• “… the Group recognises that one size does not fit all and there will be some people affected who are disappointed by the proposals”. We believe that if one size did fit all then at least the so-called Stage 1 people would be on par with the so-called Stage 2 people. We assert that this sentence is therefore misleading and could be seen as an attempt to manage expectations downwards. We must insist that it be removed/corrected.
• “(Concerning the proposals) … the Group considers that an effective system should meet all of them”. This establishes in the mind of the reader that there is a tacit endorsement of the proposals as apparently presented by the Group members individually and collectively. We cannot support the proposals as they currently stand for the reasons stated in this Commentary. We recognise that in some situations members of a body may be subject to ‘collective responsibility’, but we believe that this does not apply in this situation and that it is not in the interests of our members who are the infected/affected people to even appear to be endorsing in full what is currently being proposed. Were the key changes made (which we believe have been expressed by the vast majority of infected/affected people), then we certainly would want to see the complete set of proposals taken forward by the Scottish Government as part of a comprehensive, fair, full and ‘effective system’ of support.

 

5. Proposals (Introduction)

• “There was a divergence of views across the Group …”. We believe that this statement is being used to justify not getting to where most infected/affected people wanted the Group to get to. On key issues such as the so-called Stage1/Stage 2 split, most if not all of the non-government representatives on the Group have publically asserted their individual efforts to remove this as far as possible. The divergence was therefore between the patient/victim representatives and the officials. This unclarified ‘divergence’ is a disingenuous representation of the reality of the situation. We contend that for the sake of the victim/patient representatives the true nature of the divergence must be explained. From the Perth event, attendees were given the distinct impression by all non-governmental representatives that there remained major differences of opinion when compared to the direction of travel being promoted by government representatives. Several non-government representatives highlighted their personal and collective efforts to effect a change of position but with little success. Their assertion was that many key points of discussion were still in the frame for debate and that they would be taking back to the Review Group table the overwhelming dissatisfaction of the Perth attendees with the proposals as presented, with a mandate to require a complete overhaul of the proposals as they then were being set forth. We are concerned that the proposals have hardly changed from those presented for consultation at the Perth event. We have sympathy with the views expressed by a number of people at the local meetings and the Perth event that it was unfortunate (and ultimately unhelpful) that there were no government representatives at these events to see and hear for themselves the views of infected/affected people. We are concerned with the possibility of the patient representatives appearing to approve the Report and Recommendations document as it currently is drafted which could be detrimental to their personal integrity and the possibility that a massive disservice will then be done to the very people they have fought so hard to support for all these years. It is our contention that they should distance themselves from appearing to endorse this report as it currently stands since it does not represent a “fair and full” settlement for all our memberships.
• “The group acknowledges that the final decision of Scottish Ministers will involve consideration of whether the proposals are proportionate, evidence-based and affordable.” We believe this statement is not representative of the situation it seeks to describe. It is not our understanding of what the Group ‘acknowledges’, certainly not the victim/patient representatives. At most, it was something that government officials referred to as a standard governmental process or protocol. But given the statements by the First Minister and the Cabinet Secretary, it would be for them to ensure the smooth passage of any statutory actions arising from the work of the Review Group since we would assume they already had Cabinet approval before publically making the commitments they did. “Proportionate” is possibly correct if it refers to truly “full and fair” support, but if it refers to a comparison with some other minimising criteria then the idea that it is acknowledged by the Group is wrong. “Evidence-based” again this might be correct but according to other parts of the document, that appears to be ‘acknowledged’ as part of the unfinished business. “Affordable” is the terms we have most concern about. Of course it is affordable if it is given the priority it deserves. Affordability is a matter of political will and choice. We retain the good faith that Ministers did make their public statements with real intent, and that latterly they would not suddenly come to the realisation that it might cost them money and so try to back out of their commitments by re-defining the criteria for making decisions and blaming it on Cabinet colleagues. We assert that this sentence appears to be more downwards expectation management.
• “Key suggestions involved …”. We are very concerned by how this paragraph in the document starts since we believe it fails to mention all, or at least certain more important ‘key suggestions’. The paragraph goes on to list those items that happen to fit with the proposals contained herein. However, we know from the victim/patient representatives that getting a fair deal for so-called Stage 1 victims, and also the overwhelming preference for a lump-sum payment were the two key “suggestions”, yet they are not even mentioned anywhere in the paragraph. We assert that this is very misleading and highly selective. We believe it could be seen as a conscious misrepresentation and therefore could call into question the whole consultation with infected/affected people; even though the report seeks to highlight what “a historic Scottish Government commitment” it is. We see this as an error that must be corrected for the sake of the credibility of the whole process.
• “(They agreed) … to build on the existing scheme parameters …”. We do not accept that there was any such agreement. (And in this vein we note, and it has been raised as an issue, that key contributions from Group members were not included in the minutes of meetings, which may have led to an assumption of collective agreement.) If this statement is allowed to remain in the report it could mean keeping the so-called Stage 1/Stage 2 criteria, even just for a while? We believe that this is not the view of the majority of infected/affected patient victims and that it is not supported by evidence. Thus we challenge the statement that this has been agreed, at least for the integrity of the victim/patient representatives, and more importantly for the unsuspecting patient victims.
• “The group acknowledges that some of those affected are likely to remain unhappy with the way they would be treated under these proposals. Such people are more likely to support a fixed payment procedure whereby any total budget identified would be split evenly between all categories of recipient, regardless of their circumstances. This view was also reflected by a minority of group members.  While undeniably simple, this approach could potentially mean that those with more serious impacts only receive a nominal increase to their current support, dependent on the total budget identified.  It could conceivably conflict with the principle that nobody should be worse off under the new system than they are under the current system.” We are extremely concerned by this whole paragraph. We assert that it is a gross misrepresentation of the real situation. It automatically seeks to nullify any substantive increased support to all the so-called Stage 1 victims, and for that reason it must be challenged. The SIBF in particular cannot be associated with this for its own credibility sake with its members. We would ask how it can be said that the view to have a more even split was a view of “a minority of group members” those same group members have membership bases that would disagree this this view. For example, it is stated elsewhere in the report that half of the local meeting attendees were at the Glasgow meeting, and it is well known what the overwhelming majority view there was. We also assert that the only way this could potentially tend to lead to only “a nominal increase” for the “more serious impacts” is if the payments are derisory (as would be the case if the currently proposals stand). Also, we thought we had dealt with the unsustainable and unpalatable idea that one person’s suffering should be adjudged to be more or less than another’s. Further, we are deeply concerned by the phrase “any total budget identified”. We thought we had been told that there is no pre-conceived budgetary limit to provide financial support regardless of what the need is. Isn’t it about what is needed rather than what the government thinks it can afford? After all, the patient victims’ needs are real and rising (including past/outstanding losses) and they do not simply disappear because someone from the Finance Directorate wants to spend money on something else. We are looking for the fairness promised, and as part of that promise, for the Cabinet Secretary and the First Minister to stand up for state infected people against any pressure from colleagues who might have their own reasons for placing an unfair limit on adequate support.
• “… the survey responses support a simple, universal scheme.” We assert that this is an undeniable recognition that contradicts the quoted paragraph above. People have been asked and have responded with an unequivocal answer; ‘a simple, universal scheme’. We believe that this is not the only example of inconsistency in relation to the interpretation of consultation results within the report, but in particular this fundamental inconsistency cannot remain as it is. Similarly, for this reason we consider it was unreasonable to expect Group members to respond as if the document was “for final comments and approval” when in key areas it is imbalanced, inconsistent and not accurately representative of Group members’ views or consultation responses. There was also a deadline of 48 hours to respond which we believe was completely unfair and could be interpreted as an attempt to push through the report which appears to support Government preferences and may have the result of ‘bouncing’ the patient/victim representatives into accepting the resulting document without a fair time to consider it. We believe that it would be very unhelpful and inappropriate to allow the document to go to the Cabinet Secretary in its current form.
• “… there was some support for prioritisation based on health and disability.” We think this comment in the report is at best unnecessary. There was also ‘some support’ for financial support payments in lump sums of over £1million, but this is not mentioned. By mentioning only certain aspects where views were expressed, the document would appear to be seeking to justify elements of prioritisation (i.e. means testing) even though there is only ‘some support’ for this. We worry that this might demonstrate a tendency to ‘cherry-pick’ what a few people may have said when it supports a particular government preference as the way forward, while other factors raised in the consultation receive no mention at all, even if they were supported by many more people. We are left to question what was the point of asking people what they need and how they want that need met, (so raising expectations), and then just selectively focus on preferred responses, even if they are not the majority view? We believe that this does not describe or conform to being a competent or reliable consultation (even according to the Scottish Governments’ own standards for public consultations).

 

6. Key Principles

• “The scheme should recognise all types of loss and suffering including: Pain and suffering; Financial losses; Ongoing needs.” We assert that the proposals do not meet this stated key principle. For example, people have not even been asked to submit even the most basic of information about financial losses. During the round of local meetings this lack of asking the basic questions about losses was raised, with the response being that we would be asked for that information later, because at the local meeting stage the aim was to establish the ‘key principles’. We note that this financial losses assessment never was followed through on, which means that the most basic data to assess need was never gathered. People were never asked, and some people have said that they were never asked because that information was not wanted or needed. People have expressed concerns (misgivings) that gathering knowledge about actual and estimated losses would be irrelevant to the outcome since they suspect the size of the pot to be distributed, or at least the maximum parameters, has already been decided (i.e. ‘any total budget identified’).
• “That nobody should be living in poverty as a result of the infections.” While this might appear to be a worthy assertion, in the context of the aim to achieve a full and fair settlement for patient victims we wonder if its inclusion is helpful. We believe it should be irrelevant to the matters under consideration. Too many infected/affected people are already experiencing poverty because of their infection – and we thought that was one of the main motivations for carrying out the Review to stop that happening. It is our understanding that the aim is for a full and fair settlement so that people can live comfortably and ensure their family’s future in spite of their infection; caused by no fault of their own. Just avoiding poverty shouldn’t come into it.

 

7. Proposal 1 (from Executive Summary and body of document)

• “Stage 2 (advanced) HCV”. We are concerned about this description as it appears in various parts of the document. Is this just an over-simplified explanation of the so-called Stage 2 distinction, or is it a further differentiation of people’s “level” of being infected/affected (a sub-set of a Stage). If it is the latter, where does it come from? We believe this must be clarified, and if the latter of the possible explanations then the “(advanced)” should be removed as it is spurious. As stated previously, we believe these distinctions are no longer useable since it is based on out-dated, over-simplified and unfair criteria.
• “This should be payable in all co-infected HIV and HCV cases, including Stage 1 HCV, to reflect the additional health impacts and complications of co-infection.” We believe this demonstrates an acknowledgement of the fact that the so-called Stage 1 infection is recognised as sufficient to require ongoing annual payments for co-infected people. So the ‘one-size-fits-all principle’ should apply (if it really will) since it is assumed this cohort of people will also get the £30K increase as proposed later in the document. We insist that this inconsistency be acknowledge and addressed.
• “All co-infected who are currently at Skipton Stage 1 should also automatically receive the Stage 2 Skipton payment of a £50k lump sum.” As above, we assert that this demonstrates an unfair and unjustified distinction. If infected/affected people are all in this together and want to avoid being split into factions and pitted against each other by the prospect of a winners and losers scenario, we believe that the co-infected victims and the so-called Stage 2 victims should take a principled stance in favour of the whole cohort being treated fairly.
• “This can involve psychiatric injury of such severity that the sufferer is unable to function either in his or her working or social life. They are often unable to obtain adequate life insurance or mortgages without paying a substantial additional premium.” We question why is this being used to describe co-infected people when the reality is that even victims who are only allowed to be designated at the so-called Stage 1 also suffer these exact same symptoms and detriments, and often to the same degree of severity. The inapplicability of this distinction in health impacts is also supported by the Penrose Report where there is no separation between the so-called Stages when it comes to detriments. We assert that retaining such untenable differences in how people are considered will result in pitting one patient against another. We see this as being divisive, distasteful and morally wrong. It completely highlights the fallacy of the so-called Stage1/Stage 2 distinction and must be challenged.
• We are unclear from the way the document currently reads if payments for those who fall into these proposed new arrangements will be back-dated to recognise the losses incurred since the time of infection? We believe that it would be important that this should be clarified since one role of the Group was to include in its recommendations those matter that relate to retrospective payments. For example, in relation to the proposal for annual payments, anyone who has not received these payments previously, when in light of improved recognition of health impacts they are assessed for payment, there is a strong case to see these back-dated to cover the whole period of being infected, not just from when the assessment system became fairer.
• We are unclear from the way the document currently reads if any annual payments scheme will be tied to annual increases “to reflect Scottish full-time gross median income” as that particular measure will presumably increase annually in line with the cost of living. All that is currently proposed is that it “… will reflect historic and future financial loss for those most affected by infections.” We assert that annual payments must be explicitly tied to a recognised annual increase arrangement.

 

8. Proposal 2 (from Executive Summary and body of document)

• “… or at HCV Stage 2 only.” We assert that this needs to be subject to the red line issue of removing the so-called Stage 1 and so-called Stage 2 distinction.
• “Widows of those who died at Skipton Stage 1 should also be able to apply for this payment where the virus contributed directly to the death of the primary recipient.” We believe that this would be a redundant/unnecessary clause when the so-called Stage 1/Stage 2 split is removed. However, even as it is it is we think it is too open to interpretation (particularly by a ‘hawkish’ clinician, as has been the experience already by some people who have sought Skipton support). We strongly believe that it would be very helpful for this be more specific (in particular when it comes to the possible flexibility of interpretation of the word ‘directly’, its scope and scale).
• “Payments are, in part, recognition of injury and harm …”. We believe this is a vital comment and strengthens the case for support as a result of injury/harm caused by the state. We insist that this stays in the report.

 

9. Proposal 3 (from Executive Summary and body of document)

• “The Ross report recommendation related to chronic infection with HCV should be fulfilled.” We have campaigned on the basis that the Lord Ross report recommendations should have been implemented in full back when they were published. We assert that the economic value of the financial elements of the Lord Ross recommendations are therefore outdated, and that they were ‘of their time’. Beyond that, we are deeply concerned that the Lord Ross recommendations may be being used to justify a greatly reduced payment structure (compared to one that is ‘full and fair’) such that it would be made to appear that the patient/victim representatives on the Group would be content with the proposed maximum settlement amounts being tied to the former Lord Ross recommendations. We are concerned that this could possibly be seen as another example of the Review Group discussions being selectively pursued to favour the state’s preferred outcome. We see this as falling into the same type of misuse of discussions and consultation responses as happened with the topic of interim payments where a letter was sent calling on Westminster to make an interim payment for a derisory amount when it was fully expected that it would never happen; and that the amount being mentioned in the letter was far removed from the level discussed at the consultation meetings. In our view, after the so-called Stage 1/Stage 2 split, the matter of lump-sum payments is the second biggest bone of contention. Firstly, the Ross recommendations are from 12 years ago. £50K then (or the as yet unpaid £30K top-up, for example) is worth a lot less today. Our view is that these amount are more in line with appropriate interim payments and a starting point for people to begin receiving full and fair support; but not to be considered ‘full and final’ amounts. Similarly, we see no proposal which recognises that at the very least even these payments should be increased by an inflationary amount, or receive compound interest or be back-dated to a commensurate level to cover the entirety of the period of hurt and injury. More importantly, we assert that in the context of ‘full and fair’ then £20K, or £30K, or £50K or £70K for a life irreparably damaged or ended prematurely simply doesn’t go far enough.
• We would draw attention again to the objective as stated by the Cabinet Secretary to produce a ‘full and fair’ support arrangement. We assert that this Proposal 3 recommendation does not achieve that by any reasonable measure. People should justifiably expect full and fair to mean that at the very least their financial losses are covered. From consultation events it was clear that a majority of attendees were magnanimous enough to accept that a flat-rate lump-sum payment reflecting the collective losses which could then be divided evenly/equally should be put in place. Thus the higher earners appeared to be prepared not to receive a full settlement for their personal losses in recognition of those who had not had the opportunity to build up a career (maybe due to being infected at a young age), and who were no less worthy of a reasonable pay-out. But the actual losses they referred to were in the order of six-figure sums, for some it was seven-figures. (Had the consultation process included asking people to calculate even just financial losses this would have been understood.) It is our assertion that just because the current financial situation is poorer relatively than 10, 20 or 30 years ago this should not mean that victims are penalised. In fact the financial crisis and slow recovery has probably hit them more. The key here is that the sum to be distributed should be based on real losses distributed evenly to victims, not a government set “total budget identified” to be fought over by everyone trying to prove they are ‘more sick’ than the next person.
• It is our contention that almost everyone at the consultation meetings expressed a preference for a lump-sum payment. The discussion on this topic went so far down that line as to have move on to the need for an interim payment. We do not see this overwhelming preference for lump sum payments being properly or accurately reflected in the report or recommendations. It is our belief that if the Scottish Government really wants to be sympathetic to the needs of infected/affected people, but they genuinely cannot budget for lump-sum payments at the full and fair level of magnitude, then we ask why it cannot just be open enough to say that. We suggest that it would then be easier for people to accept a commitment to a combination of a reasonable (and ‘affordable’) lump sum payment scheme (for example £100,000 per infected or affected person), combined with the annual payment proposals that would properly cover the equivalent to a single large full and fair one-off lump sum.
• “If any individuals in receipt of the higher lump sum payment for chronic infection subsequently transition to the current Stage 2 (cirrhosis, liver cancer, liver transplant etc) …” We assert that this may be an empty promise since it is becoming clearer that the new treatments may increasingly render this transition redundant. Also, we see it as further evidence of clinging on to the old demarcation between the so-called Stage 1/Stage 2 without regard for the chronic extra-hepatic conditions arising from the infection and/or previous treatments (e.g. hypothyroidism, the likes of which become an additional chronic health burden with their own set of life-long, life-limiting detriments; and we know there are other specific physical and mental health impacts beyond liver damage).
• In good faith we are assuming that the reported lack of communication between the officials in Westminster and Holyrood is true. We therefore highlight that the announcement by the Chancellor of a significant increase to NHS funding in England within the Spending Review (£3.8bn, being an above inflation amount of 4%), which will include consequentials for Scotland, will have come as a pleasant surprise to the Scottish Government. It could reasonably be thought of as an unexpected windfall and so will not have been included in budgets. Thus we assert that it is reasonable for us to propose that some of this new consequentials money be used to better support (i.e. in a more full and fair way) contaminated blood HIV and HCV victims; assuming that lack of money is the reason for the still inadequate support levels as proposed in the current version of the report and recommendations.
• We are very concerned about the suggestion (or sub-text) that any proposals for support to contaminated blood patient victims will be scrutinised by Ministers as if they were not expecting or would not support a prior commitment by the First Minister and Cabinet Secretary to provide that support. We accept that there are good governance protocols in place, but we worry that the inclusion of such comments in the document might be overstating known governmental protocols. We are concerned that this may be a precursor to announcing that there is no money to provide full and fair support. As stated before, we do not believe and cannot accept any such response. We know that it is always a matter of political will. If any government really wants to find the money for what they set as a priority, then they will find that money. This was exactly the case when the UK Government introduced the ‘bedroom tax’ and immediately the Scottish Government ‘found’ the money to recompense everyone in Scotland who had been affected by it. Our view is that if the Scottish Government really wants to support infected/affected people (and we are told repeatedly they do) then they literally just need to put their money (our money) on the table.

 

10. Proposal 4 (from Executive Summary and body of document)

• As was discussed at the Perth event, this is potentially the most bureaucratic of the proposals (apart from the unfinished business within Proposal 5, potentially). We simply assert that this discretionary structure could be largely (or entirely) done away with by simply giving people a proper, full payment scheme so they can meet additional needs the way the rest of the population do.
• We are concerned to ensure that there should be an explicit recommendation for a totally separate Scottish body to administer lump-sums payments, annual payments and discretionary grants. We see how it could be interpreted that the proposals might only result in a Scottish body just to administer the support and assistance discretionary grants. Given the dissatisfaction that most people expressed with the current UK systems, we believe this needs to be clearer. An all-embracing Scottish body was certainly the majority view from the consultation events.

 

11. Proposal 5 (from Executive Summary and body of document)

• We believe this comes across to the reader as a catch-all for unfinished business. We think that it demonstrates how the timescales were ambitions (unrealistic); even though they were, we believe, part of a genuine desire to respond timeously. We believe it is very unfortunate that after all the delays, barriers, refusals, token gestures and promises encountered in the past 30 years, the need to complete the work of the Review Group in so short a time may have compromised the consultation process, and the Review Group’s ability to fully carry out its remit, and ultimately the achievement of the best outcomes for people by working with and not against the government (as it might appear in some ways).
• “Recipients of the ongoing annual payments should have the option of converting these into a one-off lump sum payment by way of final settlement.” We wonder why this was not included (or at least referenced) in Proposal 1 related to annual payments. We see this, and the other Proposal 5 elements, as unfinished work that must mean the Review Group will need to continue to meet beyond the original November deadline. If it does not, we would be concerned about who else will deliberate and decide on the detail of these quite crucial items of unfinished business.
• “Access to insurance products, and additional loading of premiums due to infections, should be given further consideration.” We see this as just a re-stating of what was in the Lord Ross recommendations and the Scoping Exercise recommendations. We recall that at the Perth event it was proposed and apparently accepted that the word “should” must be strengthened by replacing it with something like the word “must”. Given that this minor change was specifically mentioned and agreed as preferable in the Perth meeting but not actioned, we are concerned that if this small change was not followed up, there is clearly potential (and we would suggest more than the potential) for other weightier items that were apparently being recorded to take back to the Group, not actually getting back to the Group or not being taken on board when they were. We are concerned that the consultation process has been compromised by a lack of responsiveness to feedback given in good faith by infected and affected patient victims. We are further concerned that given the speed with which Ministers responded publicly (and admirably) to the publication of the Penrose Inquiry report, there may have been the temptation to move forward in a somewhat less than complete way after the Penrose spotlight was no longer shining.
• “The current thresholds for Stage 1 and Stage 2 of the Skipton Fund should be the subject of a specific, evidence-based review.” and “This review should also thoroughly evaluate the criteria for attributing HCV to the cause of death, including death certificate data.” As stated previously, we see these as fundamental to the whole process. We are left to reflect on why they were not adequately addressed during the eight meetings of the Review Group. The non-governmental representatives on the Review Group have all stressed publically the efforts they made individually and collectively in relation to this key topic, but no resolution has resulted. We recognise that some see reviewing thresholds/eligibility criteria/etc. as a strategically preferable alternative to forcing a climb-down on the so-called Stage 1/Stage 2 delineation. It would potentially open the door to so-called Stage 1 victims effectively becoming so-called Stage 2 people, by a completely different route to that of removing the stage designations. We acknowledge that this may be is a good strategy, but equally we worry that it could simply be a way to delay acting on this more challenging aspect. We would assert that there was already sufficiently robust evidence of the need for changing threshold criteria.

 

12. Operation of the Scheme

• “A new Scottish scheme should be established that is sensitive to the unique Scottish context.” As mentioned above, we would seek a more definite and clear description of how the entire support programme will operate in a fully independent way from the UK, or to know for the avoidance of doubt if anything was being left to London?
• “Payments should not be taken into account for the purposes of entitlement to benefits and should be exempt for taxation purposes.” We recognise that this will involve Westminster since these matters are reserved. We worry that this will delay the implementation of the Scottish scheme (since the preservation of these entitlements might require going through the UK parliament legislative process)? We fully support the spirit and intent of this operational statement, but would want to see a bolder assertion (not just ‘should’) and a plan to move forward if, while awaiting a London response, an interim arrangement needs to be put in place.
• “Appeals mechanism – a credible, transparent appeals mechanism should be established for all parts of the improved schemes.” Again, we do not see the bolder, more assertive commitment by replace ‘should’ with something stronger like ‘will’ or ‘must’ as was presented at the Perth event.
• “Accountability – the new structures established in Scotland should have affected patients involved in Governance/oversight.” Once again, we believe the strengthened wording was all meant to be fixed after Perth.
• “Any new arrangements should be subject to periodic future review to ensure they are fit for purpose.” While supporting this more genuinely designated ‘future’ work, we believe the current Scottish Government needs to build in cast-iron protections so that a future administration does not decide that the scheme needs to be scaled back as part of an overall cost-cutting exercise (e.g. which might be dressed up as a “review” in the event of another recession).

 

 

13. Other General Comments

• We are concerned that the specific remit issue of considering payments being applied retrospectively has not been fully addressed. We believe this could be vital at the point when fund administrators are following guidelines that may not have properly addressed this issue, resulting in people losing out or having to contend with an administrative process that has not adequately covered any retrospective-type eventuality.
• We recognise that there is an opportunity (potentially, at least) to head-off the consequences of the so-called Stage 1/Stage 2 split by boosting the relevance of extra-hepatic factors to be added to criteria that moves someone from one to the other. However, we are concerned that any threshold criteria change could still be open to unfairness in its application. We believe that it would be far simpler just to have someone designated as state infected and that would be sufficient to open the door to support, as opposed to a clinician making a relativistic judgement on impacts.
• We are concerned that there is little detail on those who have ostensibly been “cured” and so worry that some of our members could suffer a detriment by this matter not being adequately addressed in the recommendations.
• We are very concerned that the archetypes/case study exercise which was to look at specific cases has not been followed through. This would have looked at possible relationship situations people found themselves in, losses related to various livelihood scenarios, etc. and then it would have assessed them for likely need and possible unintended consequences arising from the proposals. This proofing or testing process would have included, for example: ‘cured’ people; dependents from different relationships; people demonstrably infected in Scotland but now resident elsewhere; separated or divorced people who have children who themselves have support needs but who no longer live with them; unmarried partners etc.
• We believe the Group needs to go back to the original statements by the Cabinet Secretary and the First Minister to pick out the no doubt sincerely meant words from our nation’s political leaders in the aftermath of the Penrose Report publication. Specifically this review should list commitments like ‘full and fair’, and then proof the draft recommendations against their aspirations.
• We are concerned that the Scoping Exercise is hardly mentioned in the report, even though it was meant to be a ‘starting point’ for the work of the Review Group. At the Perth event there was a difference of opinion about whether or not the Cabinet Secretary had accepted the recommendations of the Scoping Exercise in full (which would have implications for the report and recommendations). We maintain our assertion that she did.
• We recall how our members were encouraged during the consultation process to complete the questionnaire not only with their responses to the questions, but also with comments about the process, including the questionnaire itself. There was a big debate at the time. We wish to know what happened to these process related responses. They don’t appear to be reflected in the report. In our view, at the very least it is bad practice in social research and in community engagement (if the report document aspires to be seen as such) not to see some reference to the methodology and it’s acknowledged shortcomings/limitations/assumptions.

 

 

Philip Dolan, MBE KHS, Convener

For and on behalf of the Scottish Infected Blood Forum Management Committee.