Part of the debate – in the Senedd at 5:23 pm on 1 December 2021.
Diolch yn fawr, Dirprwy Lywydd. First of all, I'd like to thank Peter Fox for bringing this important issue to the Chamber and Members who have contributed to the debate today. I have listened carefully to all the speakers and I think there have been many valid points made.
Motor neurone disease, as so many have said, is a devastating disease and I know this because my dear uncle Robert suffered from this cruel affliction and it was absolutely heartbreaking to watch his physical disabilities increase on a daily basis to a point where he literally couldn't move a muscle, whilst his mind remained as alert as ever.
For the most common form of motor neurone disease, life expectancy is usually two to five years from the onset of symptoms. Unfortunately, at this time, motor neurone disease can't be stopped or reversed, but therapies, equipment and medication can help to manage symptoms alongside adapting people's homes to make them as safe and as accessible as possible. As Peter Fox has said, there are around 200 people in Wales living with MND at any one time and, thankfully, it isn't a common disease, but for the people who receive a diagnosis of MND, of course, this is no comfort at all.
I firmly believe that providing good-quality services for people living with neurological conditions, such as MND, is absolutely vital, and this needs to be balanced with keeping people safe and well. The Welsh Government is continuing to work with the neurological conditions implementation group to improve services for all those with neurological conditions across Wales, including MND.
As part of the treatment option offered to patients, the Welsh Government recognises that clinical trials will have a significant role to play, as we seek a treatment for MND. I recognise the benefits that Wales-based centres of expertise for neurological disease could bring, but I don't believe we need specialist research centres to improve the scale and quality of clinical trials and to increase patient access to new treatments. It is, however, vital that we are linked to any new research under way from across the whole of the UK and internationally, and we're already doing this, and that's why, I'm afraid, I won't be supporting the amendment tabled by Plaid Cymru to today's motion.
The Welsh Government, through Health and Care Research Wales, provides infrastructure to support and increase research across Wales, and this includes funding of approximately £15 million to NHS organisations to enable them to undertake high-quality clinical trials in a broad range of areas, which includes MND. I'm aware, through my colleagues at Health and Care Research Wales, that there are several MND studies already open in Swansea Bay University Health Board and Cardiff and Vale University Health Board. In some cases, support is also available for patients who are eligible for clinical research studies outside of Wales.
People suffering from MND and other degenerative conditions, along with their partners, families and carers, rightly expect us to do our utmost to help them maintain their independence and to live with dignity. We have comprehensive adaptation programmes in Wales involving councils, housing associations and care and repair agencies. Together, our total annual spend is approximately £60 million.