The MND Association focuses on improving access to care, research and campaigning for those people living with or affected by MND. We welcome the opportunity to respond to this consultation.

What is Motor Neurone Disease (MND)?

MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.  It attacks the nerves that control movement so muscles no longer work. It can leave people locked in a failing body, unable to move, talk and eventually breathe.

A person’s lifetime risk of developing MND is around 1 in 300. Six people per day are diagnosed with MND in the UK and it kills six people per day in the UK, this is just under 2,200 per year.

MND kills a third of people within one year of diagnosis and more than half within two years. It affects up to 5,000 adults in the UK at any one time. It affects people from all backgrounds. It has no cure.

What is Welsh Homes for MND?

Due to the progressive nature of MND, a person’s condition will worsen over time. Eventually, people with MND will need specialist equipment to help maintain dignity and independence.

Most homes in Wales are not equipped to deal with the changing needs of people living with MND which is why the housing adaptations process is so important. However, the existing process has failed to adequately meet the needs of people living with MND and left many living in unsafe or inaccessible housing. Some people with MND have died while waiting for alterations to be made and the pandemic has worsened the situation in many cases.

Welsh Homes for MND hopes to see a streamlined adaptations process that works much better and faster for people with MND.

Our Findings

Our research has found the current adaptations process is not fit for purpose.

It is:

· Lengthy; the process from application to instillation is far too long for people with rapidly progressing diseases like MND.

· Financially unfair; means-testing for adaptations further slows down the process but has also had a detrimental impact on the lives of people with MND and their families.

· A postcode lottery; different councils have varying definitions and processes leading to inequitable service provision across Wales.

· Complex; with service provision being so varied, combined with the fact approximately 70 organisations are delivering adaptations in Wales it is often difficult for people with MND to access accurate and up to date information.

At present, the adaptations process is complex, unjust, and inequitable; and most importantly, it is leaving people with MND in unsafe and inaccessible homes.

Our Recommendations

1. Apply a no means tested, fast-track process of housing adaptations for people living with MND

2. Monitor and report on good practice and timely installation of adaptations as set out in the Welsh Government’s Housing Adaptations Service Standards

“I worry all day about the obstacles in front of me. How am I going to get in the shower? How am I going to get into the toilet? It is so tiring. Things are taking such a long time. We were under the impression that the adaptations would be installed much quicker.” – Carol and Ken