4. Statement by the Cabinet Secretary for Health and Social Services: Update on the UK Inquiry on Infected Blood

Part of the debate – in the Senedd at 3:20 pm on 13 March 2018.

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Photo of Vaughan Gething Vaughan Gething Labour 3:20, 13 March 2018

Thank you, Deputy Presiding Officer. I'm making this statement following the written statement on 8 February this year made by the United Kingdom Government Cabinet Office.

I welcome the appointment of Mr Justice Langstaff as chair of the UK inquiry into the infected blood scandal. As we're all aware, the infected blood scandal of the 1970s and 1980s is a tragedy that should never have happened and must never happen again. Many of those affected in Wales have campaigned long and hard for a meaningful inquiry to take place. Haemophilia Wales and the Assembly cross-party group have worked closely together in supporting all those affected by hepatitis C and/or HIV here in Wales and they're key stakeholders in ensuring that the voices of people affected in Wales are heard. 

I'm pleased to note that, in accordance with the wishes of those affected, the inquiry is to be judge-led. Mr Justice Langstaff will be the full-time chair of the inquiry from 1 May this year, following his retirement from the High Court. However, he has already begun his work in writing last week to those affected, their families and other stakeholders to consult on the inquiry’s terms of reference. The consultation on the inquiry's terms of reference is now live on the inquiry’s website. It is www.infectedbloodinquiry.org.uk, and everyone who has been affected or has a view is encouraged to respond. The closing date for the consultation is the 26 April this year. 

It is important that the inquiry will lead to a full report within the shortest possible timescale, taking into account the need for appropriate care and diligence. There are balances and trade-offs to be made in both the terms and the length of the inquiry.

I have written to Mr Justice Langstaff to reiterate my previous concerns and those of the cross-party group and Haemophilia Wales. I've made it clear that I want those affected in Wales to be certain and feel assured that the inquiry will take full account of their evidence and provide answers to their long-standing questions.

It is our collective expectation that the gathering of information and the hearing of the evidence will take place at suitable locations within each UK country and that the inquiry fully considers any Welsh language requirements in doing so. Many of those affected are elderly and infirm, and travel to London, for example, could be difficult, inconvenient and stressful. I am therefore pleased to hear that he has made contact with all scheme recipients in Wales. I've just received a copy of the letter direct from him as well. My officials and staff from our Wales infected blood service will provide advice and support to the inquiry team to ensure that the needs of those affected in Wales are best met.

While the inquiry takes its course, it is essential that we continue to support those affected. So, it's timely for me to take this opportunity to update Members on the Wales infected blood support scheme, or the WIBSS. Working with our stakeholders, we designed and implemented the WIBSS in November last year. The scheme was administered by Velindre NHS Trust through the NHS Wales Shared Services Partnership.    

Following my attendance at the cross-party group, chaired by my colleague Julie Morgan, I heard first hand the personal stories of those present. This, together with stakeholder events across Wales, proved invaluable in helping to gain a deeper understanding of the impact of the tragedy on people’s lives and, in many cases, of course, their families. That was crucial in influencing the nature and scope of our new arrangements. Our scheme provides assistance over and above financial support to both those affected and their families. Early feedback suggests that this is improving our beneficiaries’ sense of security, quality of life and care and that they are treated with the dignity they have the right to expect.

Through the WIBSS advisers, they're able to receive support in accessing healthcare services and other appropriate financial benefits and public services. We've reduced the need for scheme recipients to apply for discretionary funding by including in the regular payments amounts towards additional expenses, such as increased winter fuel costs, costs associated with travel and any overnight accommodation required when accessing treatment, and help with insurance premiums. That came from listening directly to people affected during the consultation.

The scheme also provides support to those who are bereaved, especially during the early years when distress and financial difficulty are likely to be at their greatest. Now that the scheme is administered in Wales, we should be able to gain a better understanding of the needs of the individuals affected. This will help ensure the arrangements can be kept under regular review.

It was also very clear to me when meeting with individuals and the families of those affected that an inquiry was very important to them. They had been lobbying for many years, individually and through Haemophilia Wales and our own cross-party group, and, indeed, cross-party groups across other Parliaments in the United Kingdom as well, to get to the truth of what happened. I hope that they can now take some comfort that their efforts have paid off and the inquiry they have long fought for is going to happen. I also want to reassure them that I'll be following the inquiry’s progress closely and I'll be seeking assurance that the views of those affected in Wales are being fully taken into account.

I will, of course, update Members further when more information is available and the terms of reference have been agreed.