Vaughan Gething, Cabinet Secretary for Health, Well-being and Sport
This was published under the 2016 to 2021 administration of the Welsh Government
I am pleased today to inform members of new support arrangements for individuals and their families affected by hepatitis C and HIV through treatment with contaminated blood in Wales. These arrangements will come into effect in the coming year and be administered through a new process I expect to become operational in October.
The significant impact on many individual lives of such infections has been extensively discussed in the Assembly chamber with broad agreement that we must improve the ex-gratia support provided by Welsh Government. I announced significant new investment that enabled us to mirror English arrangements on an interim basis during 2016-17, but most importantly was committed to taking into account of the views of those affected to ensure that, going forward, this support is used to best effect and our arrangements are transparent and equitable.
The current UK system evolved largely in an ad hoc manner, involving five schemes with different aims and approaches. I heard strong views about the need for the administration of any new scheme to be provided through a not for profit arrangement. I am therefore introducing a single streamlined scheme for Wales to be administered by Velindre NHS Trust through the NHS Wales Shared Services Partnership.
Those identified by the existing UK schemes as Wales beneficiaries will automatically transfer to our new scheme that will be operational from October 2017. Enhanced regular payments (annual, quarterly or monthly) under the new scheme will be backdated to April 2017. Officials will ensure through collaboration with HM Revenue & Customs and the Department of Works & Pensions that the existing provisions whereby payments do not adversely affect tax liability or state benefits entitlement are preserved. They will work also with the Department of Health and the current scheme administrators to ensure the transition to the new scheme is as smooth as possible.
To inform today’s decision about the support arrangements, I wrote to all scheme beneficiaries supported by Welsh Government in October 2016, to invite them to complete a survey and/or to attend workshops held in North and South Wales. This co-productive process finished on 20 January and proved invaluable in helping me gain a deeper understanding of the impact of the tragedy on people’s lives and those of their families in many cases. Alongside this written statement I am publishing a detailed summary of what we heard during this engagement exercise. I will also be writing personally to beneficiaries about the new arrangements being put in place to support them in the future.
Three principal messages influenced my decisions. The first was that there is a need to provide broader assistance over and above financial support. Affected individuals can experience difficulties accessing healthcare services, home or travel insurance, other financial benefits, or suitable public services. Having heard this, I intend our new scheme to include a holistic support service for every affected individual - to be provided face to face, on-line and by telephone. I believe this will significantly improve our beneficiaries’ sense of security, quality of life and care and, I hope, ensure they are treated with the dignity they have a right to expect.
Secondly, I want to address the concerns raised about access to discretionary funding. This has not been straightforward or equitable in that many never apply at all for these funds and those who do apply can find it burdensome and undignified to fill in forms to seek often modest amounts of money. As equity is a key value for our new scheme, I have decided to increase all regular payments to include an amount towards additional expenses such as increased winter fuels; in relation to treatment (travel/overnight accommodation); and insurance (personal/travel). My intention is to remove the need for people to apply for this support although a small discretionary fund will be retained.
Finally, I learned that we can do more to support those who have been bereaved, especially during the early years when distress and financial difficulty may be greatest. The one-off payment is not sufficient to help people adjust when regular payments cease. To address this, I have decided that spouses, civil partners or partners will receive 75% of the regular payments for three years after bereavement. For the newly bereaved, payments will reflect the regular payment rate at the time of death. For those bereaved in earlier years, the 2016-17 rate will be applied and one payment made in full.
I trust Members will recognise this will be a compassionate new scheme that is aligned to the expressed needs of those affected by this tragic episode. There is now much to do to set up these new arrangements, operationally and legally, and to ensure a smooth transition. I am confident this will be achieved from October 2017, with financial payments backdated to 1 April 2017.