On 8 April 2017 we held our first every joint meeting with the Scottish Infected Blood Forum (SIBF). The SIBF campaigns on the contaminated blood and blood products disaster, regardless of the route of transmission, in Scotland. We wanted to come together to update members of both organisations on the current situation and give everyone a chance to have their say.
Tommy Leggate from the SIBF provided information about the new Scottish Infected Blood Support Scheme (SIBSS) and some of the work that the SIBF and Haemophilia Scotland have done together in response.
Leone Bissett spoke about the proposal for a memorial to those who had passed on as a consequence of the disaster. She urged everyone to support the Contaminated Blood Memorial Fund. The memorial will be a lasting tribute to those who died as a consequence of the disaster. The location needs to be accessible preferably in Edinburgh and durable enough to be withstand any possible weathering or other damage. It needs to be physically accessible to all ages and physical capabilities and will include words to explain what happened. Individual names need not appear but there may be ways of including individual messages. The style needs to be clear that it denotes a disaster but is also +ve and forward looking. A budget of £45,000 might be needed and so far £8,500 had been raised. It was agreed that the project had full support of those attending and agreed that the small steering group who had driven the project to date should continue to lead it.
There was then a discussion about what still needs to be done and how the new scheme could be improved. This discussion identified a number of potential issues including,
- The availability of income top-up support. Grants will be reviewed in Oct.
- The availability of lower value one-off grants from the support and assistance grant fund.
- Widow(er)s could choose a nominated doctor to help their case for gaining Stage 2.
- The term ‘Sustained Viral Response’, rather than cure, is to be applied where new the viral treatments for HCV have been ‘successful’.
- More case studies were needed to feed into the clinical review. For this, survivors access to their own or loved ones medical records might be necessary.
- Some concerns / anxieties were expressed about the application process. The first port of call should be NSS. However there was concern expressed about the telephone manner of one NSS response to a query.
- The phrase on one of the forms ‘if you really need it’ was regarded as insensitive.
- It was agreed to invite NSS to the next meeting in the autumn.
- It was noted that ‘Stage 1’ widows in particular were missing out.
- Concern was also noted about the composition of the Appeals Panel.
- All agreed that a future guarantee on the level of payments as a minimum is needed. It was agreed to write to all the political parties seeking their agreement to maintain the levels of payments set so far as a minimum.
- It was noted that Stage 0s may have particular problems in securing access to the scheme due to missing medical records.
- The issue of the widows pension payments not being made to those who have remarried.
- The cross border issues caused by the requirement that people were infected in Scotland and lived in Scotland when they first applied for support.
Although not know at the time of the meeting, the BBC were working on a Panorama programme to highlight the impact of the disaster and some of the evidence of wrong doing. The programme, Contaminated Blood: The Search for the Truth, was aired on 10 May 2017 and can be viewed below. It will be available to view for 12 months if you missed it when it went out.
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.
Today, 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.
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.
Today is World AIDS Day. Since the Penrose Report was published we know that at least 59 people were infected with HIV in Scotland by being treated with contaminated plasma derived clotting products for their bleeding disorder.
They were some of the first people in Scotland to be infected and endured the early experimental treatments and suffered the extreme levels of stigma that came with the public panic about the virus. Everyone who lived through that period remembers the media stories and the impact it had on the way everyone with a bleeding disorder was treated. Tackling the stigma associated to HIV is a central plank of this year’s World AIDS Day campaign under the slogan “It’s not just retro it’s wrong.”
Of the 59 people infected there are just 20 long term survivors left. The pain of those families who lost a loved one hasn’t gone away. The long running campaign for answers about how this could be allowed to happen, to make sure all relevant lessons are learnt, and for their to be proper financial support, has taken its toll on many affected families. Everyone who was treated for a bleeding disorder in the 1970s and early 1980s was exposed to Hepatitis C, including everyone who was infected with HIV. That meant the disaster caused 478 Hepatitis C infections in people with bleeding disorders.
We also remember that it wasn’t just people with bleeding disorders who were infected. There were an unknown number of people who were infected with HIV through a blood transfusion and up to 2,500 may have been exposed to Hepatitis C as a result of the contaminated blood disaster in Scotland.
How you can help
You can help by increasing your own knowledge about the contaminated blood disaster and making sure other people hear about it too. There are summaries on the Haemophilia Scotland website and the Penrose Report can be downloaded online. However, a great way of understanding the impact of the disaster is to watch the powerful Dogstar play, Factor 9. You’ll need the password “Inverness” to view it.
The password is “Inverness”
Secondly, some of the bereaved families are working together to construct a lasting memorial to the victims of the contaminated blood disaster in Scotland. Their fundraising is going extremely well but continued efforts are needed if their loved ones are to get the fitting memorial they deserve. Donations can be made online or by texting CBME23 and the amount to 70070. So, to donate a tenner your text should read “CBME23 £10”.
We are closing the needs assessment survey on Thursday morning (1st December). We’ve had a really good response so far but the more people who take part the more useful our results will be. We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.
There are some parts of Scotland that are a little under-represented at the moment. We are keen that the results reflect everyone in Scotland. So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.
If you do take part then you might also win one of three FitBits that we are giving away. They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!
The Birchgrove Group is a support group and platform for views for people with haemophilia, their wives and partners who were infected with HIV/AIDS and hepatitis C through blood products in Great Britain. There were 60 people in the Scottish bleeding disorders community who were infected with HIV in Scotland. Today, just 21 are still alive.
Mark Simmons is a very well respected Haemophilia Social Worker who has been working with people with bleeding disorders and HIV since the very early days of the infections. The Birchgrove Group has released this interview with Mark on their YouTube channel. We are reposting it here that more people can have an opportunity to hear Marks views on how the HIV infections have impacted the bleeding disorders community in the UK. It is particularly interesting to see how the Scottish process is viewed by affected people in England and hear the similarities in how the infection has affected people’s lives either side of the border.
If you have been a these issues and would like to discuss them, and you use the Edinburgh Haemophilia Centre, then you might like to contact the new Psychological Support Service.