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 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”.
At a private memorial event in Edinburgh today we supported the launch of the Contaminated Blood Memorial Fund.
The Fund is bringing bereaved families together to plan, and raise money for, a lasting memorial to those who have died as a result of the contaminated blood disaster in Scotland.
The families behind the memorial explain what they hope to achieve saying,
We would like your help to create a lasting memorial to those we have lost because of the contaminated blood disaster.
It will be built in recognition not just of our personal losses, but of the collective losses we all share.
We’d like it to be something beautiful, evocative and have significance for us all.
If you’d like to get involved in planning the memorial or raising funds please contact the families on firstname.lastname@example.org
If you would like to contribute to the costs of raising a memorial to those we have lost in Scotland there are two ways to donate.
Haemophilia Scotland is facilitating the Memorial Fund. 100% of the money you donate will go towards the fund. Haemophilia Scotland will not make any administration or management charges. The project belongs to the affected families themselves.