Scottish Government formally announces launch of the Scottish Infected Blood Support Scheme


Today, the Scottish Government has issued a press release “Support for those affected by infected blood.”

The press release says,

New scheme launches.

The new Scottish Infected Blood Support Scheme is now operational and will make its first payments to beneficiaries this month.

The scheme, managed by NHS National Services Scotland (NSS), has taken over this role from the existing UK support schemes as a result of the recommendations made by the independent Scottish Financial Review Group in December 2015.

Health Secretary Shona Robison said:

“The needs of patients and their families are very much at the heart of the new Scottish payment system, which will deliver improved support for those affected by infected blood in Scotland.

“The new scheme recognises that their needs are complex and will continue to change over time. It will be more responsive to them, simplifying the approach to support which was previously delivered by several different UK organisations.

“The Scottish Government is committed to doing 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 can now offer the most generous package of support in the UK to those infected and their families.”

CEO of Haemophilia Scotland, Dan Farthing-Sykes said:

“The increased payments that have already been received have made a big difference to the lives of many of those affected. Many of our members have chosen to free themselves from some of the debt that had built up as a result of years of inadequate support.

“Haemophilia Scotland is committed to working closely with the Scottish Government to make the new Scottish Infected Blood Support Scheme as simple and user friendly as possible.

“There is still work to do to fully implement the recommendations of the Financial Support Review Group but the launch of the new scheme today is a very significant and welcome step on that journey.”

The Financial Review Support Group Final Report, which has been fully accepted by the Scottish Government, says that the scheme should keep means testing to a minimum.  How that can be achieved without endangering payments to those on the lowest incomes is going to be one of the largest challenges for the new scheme.

We are expecting to hear more details about the Clinical Review Group under Professor David Goldberg once the Scottish Infected Blood Support Scheme is launched. The Clinical Review Group recommendation will be vital.  They will cover what non-liver health impacts will be taken into account for those applying for the on-going advanced payments (Stage 2).  They will also guide the scheme in determining which of the widow(er)s of those who died at Stage 1 will be entitled to the widow(er)s on-going payment.  Once this work is complete attention will turn to the terms for those who want to exchange their entitlement for on-going support for a one of payment in final settlement.

Come to our joint campaign meeting with the SIBF on Sat 8th April


Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF) are holding a joint meeting to discuss a range of issues related to the contaminated blood campaign in Scotland.  The meeting will start at 10am at the Mercure Glasgow City Hotel on Sat 8th April.

We intend to discuss the new Scottish Infected Blood Support Scheme and the establishment of a new Clinical Review Group.  There will also be an update about the progress of the Contaminated Blood Memorial Fund – you can donate today online.

Tea, coffee, and sandwiches will be provided for those who book.



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

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.


Scottish Infected Blood Support Scheme Update


Thank you to everyone who returned their data transfer forms about giving permission for your information to be transferred to the new Scottish Infected Blood Support Scheme (SIBSS).  The main transfer has now happened and the SIBSS is working towards making it’s first payments.  If you missed the deadline please get in touch with Alliance House as soon as possible, as well as completing the form below.

The SIBSS have already sent some letters out to people where they needed more information to be able to make payments.  Most of these are people who have been receiving income top-up payments but are not currently receiving the advanced regular payments from the scheme.

A short form has also been sent to the widow(er)s,that the SIBSS are aware of, whose partners died when receiving the Skipton 2 payment or MacFarlane Trust payments.  This form invites them to apply for the new widow(er)s regular payments.

The next letter will start going out in the next few days.  It will be sent to anyone else who is due to receive regular payments from April. These letters will confirm that payments will be made from April and will be made on or around the 15th of the month. This letter will go out in batches so don’t worry straight away if you hear that others receive theirs before you do.

Every letter that goes out will include a contact preferences form.  This is to allow the SIBSS to understand how you would like to be contacted by them in the future. It is an optional form but it would really help the SIBSS if you return it.

If you would like to make sure that the new Scottish Infected Blood Support Scheme has your details, particularly if you are a widow(er) or someone who has not received support from the UK-wide schemes, please complete the simple form below to provide the SIBSS with your contact details.

By the completing this form you give permission for the Scottish Infected Blood Support Scheme to retain this information and contact you with relevant information about the scheme.  Please note, the information you supply on this form will be sent directly to the SIBSS. Haemophilia Scotland will not see or keep any record of these details.

Professor David Goldberg to chair new Infected Blood Clinical Review Group

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.

Glasgow Haemophilia Centre to mark World Haemophilia Day in style

Glasgow Vintage Tea 2017The Glasgow Haemophilia and Thrombosis Centre has plans to mark World Haemophilia Day with their usual combination of style, panache, and baking.  They are cordially inviting patients to join them on the 21st April from 1pm to 3pm when their waiting room will be transformed into a vintage tea room.

Victorian dress is encouraged but not compulsory.  Whatever you wear, we’d advice nothing with a tight waist as, if previous years are any guide, there will be a lot of delicious treats to try.  You can let them know you are coming along on 0141 211 4840.

This year the World Federation of Hemophilia is taking the opportunity of World Haemophilia Day to bring attention to the women and girls in our community who live with a bleeding disorder or has someone in their lives who does.

World Haemophilia Day is officially on the 17 April every year but around the world many events fall in the surrounding days.


Celebrating Scottish Women!

It seems very appropriate that my last post for Haemophilia Scotland falls on International Woman’s Day! This post is for everyone, especially the women who have come along to our meet ups and all those who will be joining (but I hope all the wonderful men in the community will read this too as we need your support!).

As we have been discussing, there are still huge issues in the diagnosis of bleeding disorders for women, and we are still facing out dated opinions on treatment and acceptance that women can have bleeding disorders. Together we can challenge these stereotypes and support each other.

With this in mind, for inspiration and to celebrate International Women’s Day, I would like to highlight the story of the Scottish Women’s Hospitals. Like our group, these women came from all walks of life to change attitudes and to increase healthcare.


Working in World War One, it is estimated that the Scottish Women’s Hospitals treated c.200, 000 soldiers. However, the proposal for women’s medical contribution to the war effort was initially rejected in Britain. During the outbreak of World War One, their founder, Elsie Inglis approached the War Office to offer the services of female medics and auxiliaries to treat the fighting troops, she was told ‘my good lady, go home and sit still’. Elsie did not, and with the help of the Women’s Suffrage Movement, raised the funds to set up The Scottish Women’s Hospital Units. The units comprised of over 1,000 women, who travelled to treat and support fighting troops and displaced civilians. The span of their work was incredible and included France, Belgium, Serbia, Macedonia, Greece, Corsica, Romania and Russia. These women risked their lives, some did not return from warfare, and their liberty as some were prisoners of war. During World War One, the SWH units endured warfare, displacement, retreat and deadly weather conditions to save lives, working through the worst typhus epidemic in history and chronic infection due to trench warfare. Their actions demonstrate just what equality can achieve for everyone.


2017 marks 100th anniversary of Elsie’s death, she did not get to see the lasting impact of The Scottish Women’s actions and bravery, including our right to vote. But she is still with us in spirt – If you think you have a bleeding disorder and are not getting the help you need, be like Elsie, do not go home and sit still – join our women’s group!


The women’s group will be continuing, and in June, there will a meet up to decide how the group progresses. Please come along and have your say or just to meet up with other women. They are a great group and will make you feel very welcome! There will be an announcement coming out soon re the date of the meeting. Good luck to you all! xxx

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