SIBF and Haemophilia Scotland’s first Joint Member meeting

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SIBF and Haemophilia Scotland’s first Joint Member meeting

SIBF Convener John Rice and Haemophilia Scotland’s Chair Bill Wright, welcome members of both organisations to their first Joint member meeting on Saturday 8th April in Glasgow.

The joint event marked more than one milestone in the campaign in Scotland. Not just the first time both organisations invited their common membership to discuss developments, but the Scottish scheme (Scottish Infected Blood Support Scheme – SIBSS) launched the previous Monday. The joint meeting therefore had a lot to discuss.

The discussion topics included:

  • Both organisation’s joint letter to the Scottish Government on the Scottish scheme’s operations
  • The recent meeting with Scottish Government officials
  • The responses from Scottish Government to detailed questions from the joint letter, including
    • Flexible and dynamic nature of the Scottish scheme
    • An update on the latest Government figures for Scheme uptake
    • Means testing
    • Advanced/Stage 2 payments and linking to inflation
    • Back-dating payments
    • Balance of probabilities ‘test’ and decision-making
    • Missing medical records
    • Living cost supplement
    • Income top-up support grant thresholds and detailed calculations
    • Lower value one-off grant thresholds
    • Payments for widows, widowers, civil partners and beneficiaries of those who have died
    • Acknowledging not just the virus but also the anti-viral treatment that is considered a contributing factor in someone’s death.
  • An update on the forthcoming Clinical Review Group
  • Definition of a ‘cure’ and Sustained Viral Response (SVR) in relatuon to Hep C
  • The SIBSS database, letters issued by NSS and the “XSB .. .. .. .. ..” database reference number
  • SIBSS  forms and deatails requested
  • Case studies of some member’s detailed and complex circumstances
  • The Contaminated Blood Memorial
  • Community cohesion
  • Continuing work

Leone Bissett gives a comprehensive talk on the Memorial Fund update, whilst multi-tasking with her daughter. With Bill Wright.

Leone Bissett, the daughter of the late Dave Bissett, a former trustee of the Forum, gave a special presentation on the progress made so far for the Contaminated Blood Memorial Fund.

Whilst the Scottish Government did not agree to all our concerns, they did listen and acknowledged that the scheme as launched just now will not be ‘cast in stone’ but will respond to the level of need exhibited by applicants on a periodic and continual basis. To this end the scheme will be reviewed formally on an annual basis, with some reviews of particular parts of it being carried out on a 6 monthly basis. This both organisations welcomed.

There is still much work to do to align the scheme to the evidenced needs of applicants, including stage 1/stage 2 thresholds, stage 1 widows and ‘stage 0’s’. Both organisations acknowledged the openness and willingness of Scottish Government officials to engage with us and we look forward to further constructive meetings and dialogue as the months progress on the SIBSS’s first full year of operation.

Both John and Bill would like to thank everyone who attended the meeting, some at short notice, and on a very sunny Saturday too, to listen to and participate in the discussions. The meeting was regarded as a resounding success by all those attending and we hope to follow this up later in the year to coincide with further developments in this third key year of core funding. More detail on the meeting discussions will be provided in our forthcoming member newsletter.

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