29th Aug – Following a meeting of the patient interest representative from the now disbanded Financial Review Group, Bill Wright, Haemophilia Scotland Chair, writes to Shona Robison MSP, Cabinet Secretary for Health and Sport, raising issues of concern. These include alluding to a concern that Stage 1 payments to widows were not to be increased in line with those for infected people as well as the long term security of the Scottish scheme. Concerns about patient engagement were also raised.
28th Sep – Shona Robison MSP replied to Bill Wright. She offered some reassurance about the future security of the new arrangements.
27 Oct – Bill Wright replied to Shona Robison on behalf of Haemophilia Scotland raising the case of Stage 1 widows in more detail. He also continued to raise concerns about patient engagement.
17 Nov – Shona Robison replied to Bill Wright. Her letter did not alter the position of the Scottish Government in relation to the Stage 1 widows.
19 Dec – National Services Scotland held a stakeholder engagement meeting to present the progress they had made towards the establishment of a Scottish scheme.
Following exchanges in the media over the Christmas break a face to face meeting was arranged for early in 2017.
12 Jan – The meeting between Haemophilia Scotland and Shona Robison MSP, Cabinet Secretary for Health and Sport concluded with assurances that the NSS Advisory Group would not be conducting the outstanding policy work. This would be undertaken by the Scottish Government with patient engagement. Shona Robison MSP undertook to write to Haemophilia Scotland giving more details of the timetable for that work.
21 Feb – The Scottish Infected Blood Support Scheme 2017 was published although it will not come into force until the 1st of April.
28 Feb – Shona Robison wrote to to Bill Wright to give details of the upcoming clinical review of eligibility criteria under Professor David Goldberg and to bring forward a proposal for those wishing to “cash out” their entitlement to on-going support.
16 Mar – Bill Wright replied to Shona Robison raising the prospect of naming the new scheme after Frank Maguire and welcoming the appointment of Prof David Goldberg to conduct the clinical review. He also raised other outstanding issues of payments to Stage 1 widows, the scope of the discretionary fund, qualification for the Scottish scheme, and protecting payments from inflation.
31 Mar – Shona Robison replied to Bill Wright offered assurances that the Scottish Infected Blood Support Scheme will continue to evolve and adapt. She stressed that the scheme is sill and an early, transitional phase.
NB. This record is incomplete between March 2017 and November 2018
15th Nov – Johann Lamont MSP asked a question at First Ministers Questions on changes to the Scottish Infected Blood Support Scheme.