On 6 May, Haemophilia Scotland and the Scottish Infected Blood Forum wrote to Joe FitzPatrick MSP requesting a meeting to discuss a wide range of issue related to the Scottish Government’s ongoing response to the contaminated blood and blood products disaster.
The Minister for Public Health, Sport and Wellbeing agreed and we met on Wednesday last week (26 June), ahead of the start of the Infected Blood Inquiry Scottish oral hearings in Edinburgh. There wasn’t time to discuss all the issues we raised in our initial letter so the meeting was focused on five key issues.
Implementation of the Clinical Review Group recommendations
It was agreed that the introduction of the new, self-categorised, levels of support for chronic hepatitis C infection had broadly gone well. The discussion focused on our concerns about the audit process. The Scottish Government agreed to provide figures on how many people had their categorisation changed as a result of the audit. It was also agreed that it wouldn’t be necessary to repeat the audit annually.
Protecting payments from inflation
The Minister reiterated his desire to protect the SIBSS payments from inflation and that he was working towards that objective. He wasn’t yet in a position to make an announcement. He described the work that the Scottish Government had done on this issue in relation to the Scottish benefits to be paid by Social Security Scotland. The Scottish Government’s has decided to link Scottish Social Security payments to the Consumer Price Index (CPI). The CPI figure is announced every October which would give time to implement any changes for the start of each financial year.
We argued that in the case of the Scottish Infected Blood Support Scheme it would be more appropriate to link the payments to the Scottish Mean Full-Time Wage as this was the level that the Advance Hepatitis and Mono HIV payments had been established at. The Minister stressed that it could be more difficult to get agreement for this than for CPI but agreed to investigate the feasibility. It was also agreed that in the event of deflation payments should be frozen rather than reduced.
Exchanging annual payments for a lump sum
The Infected Blood Financial Review Group Report said that ““recipients of the ongoing annual payments should have the option of converting these into a one-off lump sum payment by way of final settlement.” It was agreed to set up a small working group with actuarial support to investigate ways to provide this option. There was a discussion of the reasons some people are interested in this option including the desire to leave a home to partners/family in the event of death. This lead to a discussion of the difficulties faced by some people with mortgages who want to move house. The patient groups were asked to provide more information on the specific problems being faced to see if there was any potential to make changes to to grants process to help address them.
Parity in financial support across the UK
In October 2018, Sir Brian Langstaff, Chair of the Infected Blood Inquiry called on Government to take “decisive action” to improve financial support payments. A group of 12 campaigners from across the UK have been talking to the UK Government about this issue and have pushed for a range of improvements including greater parity of payments between the nations of the UK.
On the 30 April the Department of Health (England) announced it was assigning more money to the England Infected Blood Support Scheme. However, this money is coming from the Department of Health’s existing budget which means no new money has been announced for Scotland, Wales, or Northern Ireland. Proportionately, the SIBSS is still the best funded scheme in the UK as it assists more people, particularly widows. However, there are now categories of support which are higher in the EIBSS than their nearest equivalent in the SIBSS. We asked the Minister to liaise with the Cabinet Secretary for Finance, Economy and Fair Work or with the First Minister to formally raise the lack of financial provision for Scotland in the recent announcement with the UK Government.
We also stressed the features of the Scottish Infected Blood Support Scheme that we are anxious should be protected in any discussion about taking a more uniform approach across the UK.
- Widow(er)s Pension Payments.
- Moving away from means-testing.
- Self-categorisation for chronic hepatitis support payments.
- Clear accountability of Scottish Ministers for the scheme.
- The ability to be flexible and make changes without seeking permission from all four Governments.
- Fewer beneficiaries making it easier to build relationships with staff.
- The uses of evidence and consultation to develop the scheme
The Minister informed us the devolved Governments would shortly be meeting with Jackie Doyle-Price MP, Parliamentary Under Secretary of State for Mental Health, Inequalities and Suicide Prevention. We agreed to work with Scottish Government officials to make sure the views of people in Scotland could feed in.
Support for carers
We raised the issue of the lack of support payments for family members who take on caring responsibilities. We made the case that there was a clear need for support payments to be provided, especially to cover the period when someone was prevented from working because they had taken on caring responsibilities.
The Minister explained that there was a specific issue with how the beneficiaries were defined in Section 28 of the Smoking, Health and Social Care (Scotland) Act 2005, which underpins the SIBSS. The legislation refers to infected people and their dependents but the definition of dependent doesn’t include carers. He feared that this could mean that primary legislation would be required were a carers payment to be introduced in Scotland. We made it clear that this is an issue we would continue to raise.