Category Archives: Scottish Government

Sporadic CJD cases in the UK bleeding disorders community reported

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CJD

A recent paper from the Centers for Disease Control and Prevention (CDC) covers the death of two people with inherited bleeding disorders from Sporadic Creutzfeldt-Jakob disease (sCJD) in 2014. Both of the people concerned were women. One had Type 3 von Willebrands and the other carried the Haemophilia B gene. These are the first deaths from sCJD in the bleeding disorders community anywhere in the world.

Most of the concern in the bleeding disorders community around CJD has been about variant Creutzfeldt-Jakob disease (vCJD). This is thought to be the human equivalent of bovine spongiform encephalopathy (BSE), known as mad cow disease.  Many of our members were informed in 2004 that they are at increased risk from vCJD for public health purposes.  This risk relates to being treated with blood products made from plasma donated by people in the UK who had eaten BSE implicated beef or went on to develop vCJD.  Although in 2008 vCJD implicated prions were found at post-mortem in the spleen of a man with severe haemophilia A who died of other causes, nobody with a bleeding disorder has ever developed vCJD.  To put that in context, a study found that 1 in 2000 people in the UK carry the implicated prion, which is the equivalent to 32,500 people.  At the moment there have been 178 cases of vCJD in the UK.

The news from the CDC related to a different form of CJD, sCJD appears to occur at random in the population at the rate of about 100 a year in the UK (fewer than 10 in Scotland). It mainly affects people of middle age and older and has been known about since the 1920s. It is a rare condition which is why there being two cases in recipients of blood products is unusual enough to trigger an investigation. It is not known whether these cases are related to being treated with plasma derived clotting factor products or whether these cases are coincidental. The CDC paper says, “Assuming an annual incidence rate of sCJD of 1.5–2.0 per million population the occurrence of 2 cases of sCJD in this total population may not imply a causal link between the treatment and the occurrence of the disease.”

There is active surveillance both in the UK and internationally for both sporadic and variant CJD. In the UK the National CJD Research and Surveillance Unit is based in Edinburgh and examines all cases of CJD in detail.  In these new cases they determined that they were sCJD (rather than vCJD ) by looking at how the disease progressed and where the CJD associated prions were found.

Prion diseases such as vCJD and sCJD are not well understood. There are still a lot of unanswered questions.  Haemophilia Scotland have highlighted the CDC paper to the Scottish Government, the Scottish Inherited Bleeding Disorders Network, and are looking into any potential legal implications.  We will be carefully monitoring the situation and will report any further developments on our website and to our members.

Further information about these cases can be found in a briefing paper produced by the European Haemophilia Consortium (ECH). There is more information about CJD on the NHS Choices website.  The best place to go with specific medical questions about your health is your Haemophilia Centre.

Shona Robison MSP offers assurances about the future development of the SIBSS

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shona-robisonToday, Haemophilia Scotland received a letter from the Cabinet Secretary for Health and Sport, Shona Robison MSP.

We had raised concerns that the discretionary grants scheme of the new Scottish Infected Blood Support Scheme (SIBSS) was not going to be sufficiently changed from the Caxton Foundation and MacFarlane Trust system it is replacing.  In particular that means testing has to be kept to a minimum and the need to keep things as simple as possible,

In her letter Shona Robison made it clear that the SIBSS is still in an early, transitional phase.  The priority is making sure that it launches on time and is able to make payments and receive applications.  However, she assured us that the approaches of the scheme will continue to evolve and adapt, informed by the needs of the people who be using it. She highlighted the complexity of the old schemes and the importance of people still getting the payments they are replying on.

We had also suggested that the new scheme be launched as the Maguire Scheme in recognition of the work of the late Frank Maguire campaigning on behalf of those affected by the contaminated blood disaster.  However, this suggestion is not going to be taken forward to reduce the potential for confusion.

Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF) will be meeting with Scottish Government officials next week to discuss how the scheme might evolve in the future.  We are also holding a joint meeting for members in Glasgow on the 8th of April to keep everyone updated.

 

Professor David Goldberg to chair new Infected Blood Clinical Review Group

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David Goldberg

Cabinet Secretary for Health and Sport, Shona Robison MSP, has written to Haemophilia Scotland announcing that Professor David Goldberg has agreed to chair a new Clinical Review Group to provide recommendations to the new Scottish Infected Blood Support Scheme.

Professor Goldberg is a consultant in Public Medicine and a Consultant Clinical Epidemiologist.  He will be familiar to those following work on this issue in Scotland as the former Chair of the Penrose Short Life Working Group which made recommendations about searching for the missing victims of the contaminated blood disaster in Scotland.

The new group will be looking at the latest international scientific and clinical evidence to address some of the outstanding issues for the implementation of the new SIBSS.  Haemophilia Scotland will have a representative on the group.  It will look at,

  • How to assess the overall health impact of hepatitis C so that appropriate guidelines can be developed for assessing people for ongoing support payments.  The Skipton Fund only looked at liver damage when assessing people for moving from their Stage 1 to Stage 2 payments. SIBSS will be looking at the whole health impact when deciding if to move people from the chronic payment to advanced payments.
  • The Scottish Government is committed to making the on-going payments to widows of those who die when in receipt of the advanced payments (the equivalent of the old Stage 2 or MFT payments). Crucially these payments will also be made to the widow(er)s of those who die at the chronic stage (the old Stage 1) where hepatitis C “contributed directly to the death of the primary recipient.”  The new group will make recommendations about how that should be determined.

The full membership of the Clinical Review Group, and date of the first meeting, has not been announced but both are expected soon.

In her letter Shona Robison MSP also announced that, following the conclusion of the Clinical Review Group, a working group would be established to look at the issue of lump sum payments.  The Scottish Government has committed to giving people the option to exchange their entitlement to on-going payments in exchange for a one-off lump sum.  The Scottish Government believes that the work of the Clinical Review Group will be relevant to these discussion and that there may have to be a system for deciding who can apply for any lump sum option in the first instance.

You can read the Cabinet Secretary’s letter in full, including the full terms of reference for the Clinical Review Group. You can also read all recent letters between Haemophilia Scotland and the Scottish Government, include Bill Wright’s latest reply on our campaigning timeline.

Update on Scottish Contaminated Blood Support Payments

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Scottish Government, St Andrew’s House, Edinburgh

 

Before the end of 2016 the Alliance House organisations and the Scottish Government were prioritising payments to those already in their systems who were due money for the financial year 2016/17.

All those who returned the forms by the deadline received payments. An extra £12.5millions was paid out by Scottish Government, over and above the £2.5 million via the Skipton Fund, Caxton Foundation, and MFT paid in previous years.

  • The vast majority was used in increasing the Skipton Stage 1 payment from £20,000 to £50,000. 330 payments of £30,000 were made to people in Stage 1.
  • The distinction between Stage 1 and Stage 2 was removed for those who are co-infected with Hepatitis C and HIV.  All of these people are now treated the same.  Stage 2 lump sum payments of £50,000 were made in 11 cases.  We believe that all of these were people with a bleeding disorder.
  • 138 people who are having their on-going payments increased received lump sums backdating the increase to April 2016.

We know that the end of last year was very frustrating for many of our members who didn’t know when they would be receiving their payments.  However, there was a lot of work and negotiation going on behind the scenes to get these payments out before the end of the year and we are grateful to the officials who worked hard to get these payments out before Christmas.

We know that there are still some people who haven’t returned their forms.  If you haven’t returned your form and need some help or haven’t received a form and think you should have please get in touch with Dan Farthing-Sykes in the office on 0131 524 7286 or dan@haemophilia.scot.

The next challenge is to make sure that the transition to the new Scottish support scheme is as smooth as possible.  The new scheme will be administered by National Services Scotland (NSS) which is a Scotland-wide health board.  This is a big change from the UK-wide scheme which were non-government organisations.  The new Scottish scheme is being delivered by part of NHS Scotland.  As such it will be directly accountable to the Scottish Government.  National Services Scotland have launched a webpage where you can keep up to date with progress towards the launch of the new Scheme.

As part of this process NSS are setting up an Advisory Group which will help the scheme administrators make sure their systems are as sensitive as possible to the needs of the people receiving the support.  If you are interested in joining the Advisory Group please email NSS on NSS.SIBSS@nhs.net.

We have had some concerns that the Advisory Group wasn’t going to be well equipped to deal with the outstanding policy issue.  However, we have received assurances from the Scottish Government that they will continue to take the lead on this work themselves and will involve those affected as much as possible.

The outstanding policy issues from the Financial Support Review Report are,

  1. Lump Sum Conversion. Recipients of the on-going annual payments should have the option of converting these into a one-off lump sum payment by way of final settlement.
  2. Insurance. Access to insurance products, and additional loading of premiums due to infections, should be given further consideration.
  3. Regular Review. The operation of the schemes should be subject to periodic review in conjunction with beneficiaries.
  4. Threshold Review. The current thresholds for Stage 1 and Stage 2 of the Skipton Fund should be the subject of a specific, evidence-based review to create new criteria based on health impact, rather than focusing predominantly on liver damage.
  5. Hepatitis C deaths review. This review should also thoroughly evaluate the criteria for attributing HCV to the cause of death, including death certificate data.
  6. Stage 0 applications. Applicants may have historically been rejected from the Skipton Fund without sufficient justification, openness and transparency. It should be open to these applicants to reapply to the new scheme using more uniform, published principles. A future review should consider suitable principles for the evaluation and decision-making process.

We understand that the Scottish Government are already working on establishing a group who will work on issues 4 and 5, reviewing the threshold between the stages and the criteria for attributing a death to hepatitis C. We are hopeful that more details will be announced before the end of February.

We further understand that the policy development work to establish the criteria for applications to the new discretionary grants will also be lead by the Scottish Government rather than by NSS itself.

We have been disappointed to learn that the widows of those who died at Stage 1 of the Skipton Fund process are not currently eligible for the additional £30,000 payment to bring them in line with the new Stage 1 lump sum for those who are still alive.  Our Chair, Bill Wright, has been exchanging letters with the Cabinet Secretary making the case for widows to receive this money.  However, the Scottish Government’s position that this will not be revisited until the schemes are reviewed. We are continuing to explore ways in which Stage 1 widows can be better supported financially under the new scheme.

 

Scottish Government launches targeted campaign to trace contaminated blood cases

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think-youve-had-a-blood-transfusion-banner

The lone recommendation of the Penrose Inquiry final report was that Hepatitis C testing should be offered to individuals who may have been exposed to Hepatitis C via blood or blood products before September 1991, who have not already been tested.

Our CEO, Dan Farthing-Sykes, served on a Short-Life Working Group, commissioned by Scottish Government which estimated the numbers of living undiagnosed people and recommend any further action that should be taken to try to identify them. In its report, the Short-Life Working Group recommended a targeted awareness campaign to encourage those who may have had a blood transfusion before September 1991 to come forward for testing. It is estimated that 32 people who received a blood transfusion in Scotland before September 1991 were infected with Hepatitis C and are still alive and have not yet been tested.

A public information notice was launched today (10th of October)  to encourage the undiagnosed group to come forward for advice and testing if they have not done so already.    Around 400,000 posters and leaflets are being distributed to GP surgeries, hospitals, care homes, pharmacies and other community buildings across Scotland. The Chief Medical Officer Dr Catherine Calderwood has also sent a letter to clinicians to remind them of the need to offer Hepatitis C tests to certain at-risk groups.  A different approach is being developed to trace any potential cases of people with bleeding disorders.

Anyone who knows, or suspects they may have received a blood transfusion before 1 September 1991, and thinks they might be at risk, should call the Hepatitis helpline on 0800 22 44 88 or speak to their GP practice.  

Health Secretary Shona Robison said:

The working group which we established to look into this estimated that the number of people infected with Hepatitis C via transfusion who have still not been diagnosed will be very small. However, it is possible there may be some people with mild symptoms who are living with this illness and don’t know it. There have been efforts to trace them in the past, but we want to make sure that everything possible is done to find those still undiagnosed.shona-robison

The good news is that treatments for Hepatitis C have advanced enormously in recent years, so it really is vital that people come forward.

The Scottish Government is absolutely committed to do all we can to help the people affected by this terrible chapter in the history of our health service. We remain the only country in the UK to have held a full public inquiry and I’m proud that we are taking steps to improve the financial support available to those infected, and their families.

Scottish Government takes action to find #ContaminatedBlood missing cases

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Penrose Publication

The Penrose Inquiry into the infection of people with Hepatitis C / HIV from NHS treatment was published its Final Report on March 25, 2015.

Lord Penrose made just one recommendation that,

the Scottish Government takes all reasonable steps to offer an HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not been tested for HCV

In response, the Scottish Government asked Health Protection Scotland to establish a that a Short-Life Working Group to bring forward recommendations about what practical steps could be taken to implement the recommendation from the Inquiry.

Today, the Scottish Government has published the report it received from the Penrose Short-Life Working Group and issued a press release.

The group unanimously made three recommendations,

  1. Delivering a targeted awareness campaign focused solely on individuals who received a blood transfusion pre-September 1991. This awareness campaign should aim to reach all targeted individuals through the use of (e.g. leaflets and posters) and more modern (e.g. social media) approaches. Such approaches recognize that an appreciable minority of people do not access information from more traditional sources. The details surrounding the design and implementation of the campaign would be worked on following any such Scottish Government approval. The SLWG agreed that any such campaign should be evaluated to determine its impact.
  2. The identification and written offer of an HCV test to a group (up to 71) of plasma product factor recipients who are as yet not known to have been HCV tested. 
  3. A Chief Medical Officer letter should be sent to all clinicians in Scotland to remind them of certain risk factors (including pre-September 1991 blood transfusion and injecting drug use) and clinical (including otherwise unexplained Alanine Aminotransferase (ALT) liver enzyme level) indicators for HCV infection and making them aware of the recent advances in therapy and thus the benefits of HCV testing.

All three recommendations of the Short-Life Working Group are being implemented by the Scottish Government, with work already well underway.  The public awareness campaign, for example, is due to be launched later this month.

 

Shona Robison in the Scottish Parliament

Image by © Ken Jack/Demotix/Corbis

Cabinet Secretary for Health, Wellbeing, and Sport, Shona Robison MSP has said,

…I have today accepted all these recommendations to ensure that everything possible is done to find people who may have been infected and offer them the best care and treatment. …I would urge anyone who thinks they had a blood transfusion before September 1991 to seek advice from the Hepatitis helpline or their GP practice about a test if they have not yet done so.

Haemophilia Scotland CEO, Dan Farthing-Sykes, who served on the group said,

Perhaps the most surprising recommendation to the bleeding disorders community in Scotland will be Recommendation 2.  The names referred to were uncovered by the look-back exercise conducted by the United Kingdom Haemophilia Centre Doctors’ Organisation (UKHCDO) on behalf of the Haemophilia Alliance.  They are individuals who are thought to have received treatment in a Scottish Haemophilia Centre during the relevant period who have been lost to follow-up. These efforts to find them are vital both in terms of their likely infection and the proper care of their bleeding disorder.

I know contaminated blood campaigners will be also be interested that the statistical work conducted as part of this process.  That work concluded that ‘the number of [living] undiagnosed HCV-infected people, having acquired their HCV in Scotland as a result of blood transfusion pre-1991, is within the range of 0 and 63’.  In fact, it is thought to be as low as 32, once those who have been diagnosed in other ways are taken into account.  This in stark contrast to the figures of tens of thousands across the UK which have been suggested in the past.  Those higher figures have often been given as a reason that the levels of financial support couldn’t be at set at more appropriate levels.

More information

The full report and the data supporting it can be found on the Scottish Government website.

The Scottish Government have also issued a press release with further information on the implementation.

Scottish Government timetable for #ContaminatedBlood financial support payments

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Applecross Pass

The road to improved financial support payments has already been long and winding.

Last week, those who represented the patient point of view during the financial support review group met with Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport.  Several of us had been raising serious concerns about the fact that the new payments, announced in March, have not started yet.  Many Haemophilia Scotland members are in urgent need of this additional support. Every day of delay causes additional stress and anxiety.

At the meeting we were told that different groups can expect payments at different times.  If you are currently receiving a payment then the increase is estimated to come in October 2016. However, this timetable is subject to the issues set out below.  For example, the boards of the UK-wide bodies have not yet agreed to this timetable.

Those who will get a new support payment will have to wait until the new Scottish scheme is set up in April 2017.

Following the meeting, the Scottish Government have produced this short paper which details the expected timetable and gives more information.

Payments expected in October 2016 (backdated to April 2016 where applicable)

  • Stage 1 payment to increase from £20,000 to £50,000 (an additional £30,000 for those already in the scheme).
  • Stage 2 payments to increase from £14,749 to £27,000.
  • HIV payment to increase from to £27,000
  • Co-infected payment to increase from £14,749 £29,498 to £37,000

Payments to be start with the new scheme in April 2017 (not backdated)

  • Widow(er)s’ pensions
  • The new Scottish discretionary grants.  This will replace the Caxton Foundation and the discretionary element of the MacFarlane Trust (MFT). It will honour existing commitments from these successor organisations.

After April 2017 payments will be made from Scotland.  The scheme is likely to be administered by National Services Scotland (NSS) which is effectively an all Scotland NHS Health Board.  There will be an advisory group including stakeholders but other governance arrangements aren’t clear yet.

Issues to be overcome before October 2016

Before the UK schemes can be used to make the new Scottish payments there are some hurdles to be overcome.  These are what are causing the current delays.

  • Westminster must pass Tax Orders so that none of the payments are liable for tax.  This has to happen whichever mechanism is used to make the new payments.
  • To use the existing scheme to make the new payments all four nations of the UK must agree.  At the moment only Scotland is signed up.  We have asked all three of the other Government not to stand in the way of Scottish payments and have had these replies from England and Wales.  There have also been two stories in The Sunday Herald to put pressure on England in particular.
  • For the payments to be made in October there must also be agreement from the Boards of the UK-wide schemes.

Issues to be overcome before April 2017

Before the Scottish scheme is established there are some important decision to be taken including,

  • Changes to the threshold for receiving ongoing support.  The threshold is to depend on whole health impact of infection rather than focusing on liver damage alone.
  • A reexamination of the ability of those with incomplete medical records to apply.
  • An appeals procedure for those who think they should be in the Scottish scheme.
  • A procedure for converting ongoing payments into a lump sum settlement.
  • How the new discretionary scheme will operate in practice.

Groups will be established shortly to look at these points.

This article was amended on 19 August 2016 following a request from the Scottish Government make it clearer that at the time of publication none of the boards of the UK-wide bodies had given formal agreement to implement the new Scottish payments.

NOhep Day 2016

Dan Farthing-Sykes, Jeff Frew, Robert Girvan, Sam Baker, Shona Robison MSP, Petra Wright. Credit: Petra Wright, Hep C Trust.

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