Dystonia

2. Questions to the Minister for Health and Social Services – in the Senedd on 5 June 2019.

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Photo of Andrew RT Davies Andrew RT Davies Conservative

(Translated)

5. Will the Minister commit to establish a national action plan to guarantee that people living with dystonia in South Wales Central are able to receive the right treatment at the right time? OAQ53945

Photo of Vaughan Gething Vaughan Gething Labour 2:48, 5 June 2019

Our updated neurological conditions delivery plan sets out our commitment with NHS Wales to both raising awareness of neurological conditions and ensuring those affected by any neurological condition have timely access to high-quality care, irrespective of where they live and whether these are delivered through hospitals or in a community setting.

Photo of Andrew RT Davies Andrew RT Davies Conservative

Thank you for that answer, Minister, and I thank you for your written response to me on previous questions that I've put to you.

You've indicated that, this month, June, you will be meeting the dystonia relatives support group and also other Members in this Chamber, along with the chair of Cardiff and Vale University Local Health Board. There have been recent cancellations in the botox clinic that is available to dystonia patients, and some 300 patients have had their appointments cancelled as I understand it. There are 3,500 patients across Wales who suffer with this condition. Will you be addressing these cancellation notices that have been sent out to patients and making sure that, where patients do have appointments for this very troubling condition, those appointments are honoured and that serious thought is given to a national plan of delivery for dystonia patients, because, as I said, there are 3,500 patients across Wales suffering with this condition?

Photo of Vaughan Gething Vaughan Gething Labour 2:49, 5 June 2019

I thank the Member for the follow-up question. I did meet yesterday with the Dystonia Society support group and two Members who aren't in the Chamber today—Vikki Howells and Dawn Bowden—to discuss some of the challenges that the Member raises. I've committed to intervening and clarifying expectations, and to making sure that there is further movement made. It's partly about staffing within the service. It is a service that is delivered on a hub-and-spoke model, with Cardiff being at the centre of it for south-east Wales, and led by Swansea Bay University Health Board for south-west Wales. I want to see proper investment made in staff, because that's the key issue to making sure that people are seen on time, because I do recognise that not having an appointment does have a real impact on people's quality of life, whether people are in work or not. So, yes, I'm committed to seeing further action taken, and I'll happily update Members when that further action has been undertaken.