1. Will the Cabinet Secretary make a statement on the treatment of rare diseases? OAQ(5)0125(HWS)

Thank you for the question. We launched the Welsh implementation plan for rare diseases in February 2015 and established the rare disease implementation group. These actions reinforce our commitment to promoting equity of access to diagnosis, treatment and support to patients. The annual report, providing an update on progress, was published on 14 February.

Minister, I was very pleased at a recent event held in the Assembly to hear that the Welsh Government of Wales are leading the field in this area in terms of the UK. Whilst the diseases themselves are rare, there are a great many of them, which means that one in 17 of us is likely at some point in our lives to suffer a rare disease, in which the screening, testing, diagnosis and treatment is going to be absolutely crucial. I think it’s a very important area, often, perhaps because of the specific rarity of each condition, that is overlooked, so I hope that this priority will be maintained.

Yes, I’m happy to give him that assurance. In fact, yesterday we published the CARIS data, I’ll tell you what that is—It’s the Congenital Anomaly Register and Information Service. Now, we established that in Wales in 1998, and that is part of what helps us to lead the field. It maintains information on all babies born to mothers in Wales, and that information is held about them if they do have a congenital anomaly or a rare disease until their eighteenth birthday, or when they would have reached their eighteenth birthday. It’s part of looking at that data and information that allows us to try and make further progress. We’re also taking part, with the rest of the UK, in the 100,000 Genomes Project, and have invested directly money within that. And, of course, the monies we’re investing in the new treatment fund—chunks of that money will go to treating people with rare diseases and conditions. So, I’m more than happy to give him the assurance this will continue to be an area of interest and action, and we expect to see further improvement.

I was very pleased to meet patients and families who are affected by haemophilia and contaminated blood at the rare disease event that David Melding referred to. As the Cabinet Secretary knows, I’m very concerned about the treatment of people with haemophilia who were given contaminated blood in the 1970s and 1980s, which has resulted in 70 deaths in Wales and many more other families affected. I’m aware that he wrote to his counterpart, Jeremy Hunt, last year giving his support for a public inquiry into the scandal. I wondered if he could tell us if he has had a response and, if he hasn’t, what further he intends to do, and, if he has, what is his reaction?

No, I wouldn’t say I’ve had a satisfactory response from the UK Government. You’ll note that, after the cross-party Members’ debate we had in this Chamber, I undertook again to press the UK Government, and I’m awaiting a further response. Thus far, the UK Government have been resistant to having a public inquiry, and I recognise that that will be a continual problem for the families of those affected, both living and deceased, because until there is a proper public inquiry—which only the UK Government can provide because of where the information is about how the scandal erupted and was not properly brought to light—then I recognise that injustice will continue. So, this Government will maintain our commitment to keep on pressing the UK Government until we do see the right thing done.