7. Welsh Conservatives Debate: Motor neurone disease

Part of the debate – in the Senedd at 5:08 pm on 1 December 2021.

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Photo of Peter Fox Peter Fox Conservative 5:08, 1 December 2021

Diolch, Deputy Llywydd. I move the motion in the name of Darren Millar.

Before I begin, I would like to declare that I'm proud to be an MND champion for the Motor Neurone Disease Association, and would like to thank them for the help that they have given me to prepare for this debate. 

Members, just for a few seconds, imagine being robbed of your speech and mobility. Imagine feeling as if you're locked in a failing body, unable to move, talk and eventually breathe. For some people in Wales, they don't have to imagine this because they are living with this reality right now. Motor neurone disease, often known as MND, is a fatal, rapidly progressing disease that affects the brain and spinal cord, so that muscles no longer work. It affects up to 5,000 adults in the UK at any one time. In Wales, approximately 200 people currently live with MND. This may not sound like many people, but this awful disease has significant consequences for those living with it, as well as their family and their friends. Cruelly, it kills a third of people within one year of diagnosis, and more than half within two years. There is no cure, and the person's condition will worsen over time due to the progressive nature of the disease. I think we could all welcome the UK Government's investment of £50 million to fund research into new treatments for MND, and acknowledge Plaid Cymru's amendment today that we can do more to improve the scale and quality of clinical trials and increase patient access to new treatments.

Eventually, people with MND will need specialist equipment to help maintain dignity and independence, allowing them to remain in their own homes. Housing adaptations, therefore, support the provision of care close to home, reducing pressure on front-line services such as health and social care, and enhance well-being for the individual and their families. However, as an MND champion, I've heard from people living with the disease about the unnecessary challenges they face to have their homes adapted to meet their needs. Indeed, research by charities such as MNDA has found that the current housing adaptations process is far too long for people with rapidly progressing diseases. As the MNDA have said, these delays are an unintended by-product of the evolution of legislation, the variety of funding regimes that have existed previously, as well as the sheer numbers of organisations involved in delivering adaptations. The current process is also too complex and financially unfair. Means-testing for adaptations further slows down the process, whilst different councils have varying definitions and processes, leading to a postcode lottery of support across Wales.

Now, I understand that the Welsh Government has made some welcome progress on this matter, and I welcome the recent simplification of the process for people to get help with small and medium-sized adaptations to their homes. But I am concerned to hear that some councils are continuing to apply means-testing until there is a legal obligation not to do so, and I hope this is something that can be looked into further.

Deputy Llywydd, to conclude, we have made steps in the right direction in Wales, but need to go further. We need the Welsh Government, indeed all Governments, to work with councils and social care providers to put in place a fast-track housing adaptations process and to bring to an end the current means-tested system, so that people living with MND have the best quality of life possible. I hope all Members of this Welsh Parliament, regardless of their political membership, will support this debate and will work together as one Chamber to deliver the dignity and peace of mind that people living with MND deserve. I look forward to listening to the debate, Deputy Llywydd. Thank you.