John Rice and Bill Wright, Chairs of the SIBF and Haemophilia Scotland respectively, joined forces to encourage everyone to register with the Scottish Infected Blood Support Scheme.

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.