At the recent Joint Member meeting of the Forum and Haemophilia Scotland, the key issue of registration onto the Scottish Scheme was of paramount importance to John Rice and Bill Wright.
Those people who have previously been accepted onto the Skipton scheme and/or have claimed through the Caxton Fund should already have recieved letters from NSS, the SIBSS administrators, providing them with confirmation of their Beneficiary Scheme Number, prefixed with ‘XSB’ followed by 5 digits:
If you have been infected with Hepatitis C/HIV from contaminated NHS blood or blood products then you must get recognised and accepted onto the Scottish Scheme to be able to recieve financial support from it and this will only be confirmed if you have been allocated an ‘XSB’ scheme number. If you have no record of being allocated an ‘XSB’ number or have not received a letter from SIBSS staff with it on it then you will not be on the Scottish Scheme’s beneficiary database.
If you are unsure in any way and need assistance please do get in touch with us by e-mail.
Example Letter from NSS re SIBSS and XSB number (top right)
John and Bill discussed this point at the joint meeting, among many other issues and updates that were highlighted for members of both organisations. The original post covering the meeting can be read here.
An additional summary of the meeting courtesy of Bill Wright is shown below:
JOINT SIBF / HAEMOPHILIA SCOTLAND MEETING, GLASGOW 8th APRIL 2017.
The first joint members meeting between these two bodies was a highly constructive gathering which had three main benefits.
- An informative update from Tommy Leggate which set out the details of the new scheme and what SIBF and HS had said in their joint response.
- A briefing from Leone Bissett on the proposal for a memorial to those who had passed on as a consequence of the disaster.
- Ideas on what needed to be done and how the new scheme could be improved.
The discussions identified a number of matters under the new Scottish Scheme.
- 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.
Leone Bissett explained about the potential for a permanent Memorial and the progress so far.
- 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.