The road to improved financial support payments has already been long and winding.
Last week, those who represented the patient point of view during the financial support review group met with Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport. Several of us had been raising serious concerns about the fact that the new payments, announced in March, have not started yet. Many Haemophilia Scotland members are in urgent need of this additional support. Every day of delay causes additional stress and anxiety.
At the meeting we were told that different groups can expect payments at different times. If you are currently receiving a payment then the increase is estimated to come in October 2016. However, this timetable is subject to the issues set out below. For example, the boards of the UK-wide bodies have not yet agreed to this timetable.
Those who will get a new support payment will have to wait until the new Scottish scheme is set up in April 2017.
Following the meeting, the Scottish Government have produced this short paper which details the expected timetable and gives more information.
Payments expected in October 2016 (backdated to April 2016 where applicable)
- Stage 1 payment to increase from £20,000 to £50,000 (an additional £30,000 for those already in the scheme).
- Stage 2 payments to increase from £14,749 to £27,000.
- HIV payment to increase from to £27,000
- Co-infected payment to increase from £14,749 £29,498 to £37,000
Payments to be start with the new scheme in April 2017 (not backdated)
- Widow(er)s’ pensions
- The new Scottish discretionary grants. This will replace the Caxton Foundation and the discretionary element of the MacFarlane Trust (MFT). It will honour existing commitments from these successor organisations.
After April 2017 payments will be made from Scotland. The scheme is likely to be administered by National Services Scotland (NSS) which is effectively an all Scotland NHS Health Board. There will be an advisory group including stakeholders but other governance arrangements aren’t clear yet.
Issues to be overcome before October 2016
Before the UK schemes can be used to make the new Scottish payments there are some hurdles to be overcome. These are what are causing the current delays.
- Westminster must pass Tax Orders so that none of the payments are liable for tax. This has to happen whichever mechanism is used to make the new payments.
- To use the existing scheme to make the new payments all four nations of the UK must agree. At the moment only Scotland is signed up. We have asked all three of the other Government not to stand in the way of Scottish payments and have had these replies from England and Wales. There have also been two stories in The Sunday Herald to put pressure on England in particular.
- For the payments to be made in October there must also be agreement from the Boards of the UK-wide schemes.
Issues to be overcome before April 2017
Before the Scottish scheme is established there are some important decision to be taken including,
- Changes to the threshold for receiving ongoing support. The threshold is to depend on whole health impact of infection rather than focusing on liver damage alone.
- A reexamination of the ability of those with incomplete medical records to apply.
- An appeals procedure for those who think they should be in the Scottish scheme.
- A procedure for converting ongoing payments into a lump sum settlement.
- How the new discretionary scheme will operate in practice.
Groups will be established shortly to look at these points.
This article was amended on 19 August 2016 following a request from the Scottish Government make it clearer that at the time of publication none of the boards of the UK-wide bodies had given formal agreement to implement the new Scottish payments.
Dan Farthing-Sykes, Jeff Frew, Robert Girvan, Sam Baker, Shona Robison MSP, Petra Wright. Credit: Petra Wright, Hep C Trust.