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.

 

Scottish Infected Blood Support Scheme Update

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Mailing

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

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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.

Glasgow Haemophilia Centre to mark World Haemophilia Day in style

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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!

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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.

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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.

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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!

Elsie_Inglis

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

Thanks to Thurso for a wonderful fundraiser, you raised £1400!

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Our special thanks go to Michelle and Ritchie Campbell of the Park Hotel, and to Jack Mcphee of The Andy Gunn Band and Pappaduke for organising and hosting a wonderful night of music and fun to raise money in our honour! And for all of you that could not make it, here is a special clip of the gig, courtesy of The Andy Gunn Band. This will give you an idea of how amazing the evening was!

Special thanks continue and go to all the bands –  The Andy Gunn Band, Pappaduke, Forgetting The Future & Alice And The Coolers for brilliant music. And, of course, our heartfelt thanks go to all those who donated to the cause and bought raffle tickets and entry tickets – you raised £1400 for us!

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We should also mention the spectacular displays of dancing, ranging from strictly to breakdancing and even a bit of barn dancing (?) at one point – not to mention the freestyle forms on offer. It was a lovely atmosphere and the bands enjoyed your displays of appreciation. Thank you, Thurso, you know how to party!

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These events are so important to us, and help us progress our work to support people living with haemophilia and their families. It is also vital for us to raise awareness about haemophilia and help us to challenge stigma and isolation – we certainly did this in style at the weekend. And as my last event for Haemophilia Scotland, it is certainly one that I will remember!

New advice on the use of Direct Acting Antivials in the treatment of Hep C for those with prior exposure to Hep B

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mhra-logoThe Medicines and Healthcare products Regulatory Agency (MHRA) is an executive agency of the Department of Health (England) and regulates medicines, medical devices and blood components for transfusion in the UK. In the January addition of their Drug Safety Update the agency changed their advice on the use of Direct Acting Antiviral therapies for the treatment of Hepatitis C.

All patients should be screened for hepatitis B before starting treatment for chronic hepatitis C with direct-acting antiviral interferon-free regimens. Patients who are co-infected with hepatitis B and C viruses are at risk of hepatitis B reactivation, and should be monitored and managed according to current clinical guidelines.

This changed advice reflects a concern that the successful treatment of hepatitis C with the new direct acting antiviral products could allow a previously supressed hepatitis B infection to reactivate.

Both hepatitis C and hepatitis B are blood borne viruses and can be transmitted in very similar ways. As a result we are concerned that people with bleeding disorders who were infected with hepatitis C might also have been infected with Hepatitis B at the same time. As with hepatitis C, hepatitis B can also be transmitted sexually so we are conscious this change in advice could be relevant to some partners too. With so many people recently completing the treatment using direct acting antivirals we are taking the new advice from the MHRA very seriously.

We raised these concerns at the recent meeting of the Steering Group of the Scottish Inherited Bleeding Disorders Network. We were assured that Scottish Haemophilia Centres have not seen an increase in hepatitis B cases or in unusual liver function test results.

However, in response to our concerns, all Scottish Haemophilia Centres have been asked to contact their local hepatology teams and discuss this issue.  They will ascertain that appropriate hepatitis B reactivation screening in patients receiving these antiviral regimens is being undertaken.  Anyone who is anxious about potential hepatitis B reactivation, and has recently completed treatment with direct acting antivirals, can also request a test from their Haemophilia Centre.  The Network has asked to receive reports of any cases of Hepatitis B reactivation which are discovered so that the situation can be monitored.

Further information about hepatitis B can be found on the NHS Choices website.

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