Accessible Housing: Our findings

Housing adaptations are the biggest one-off cost people living with MND face. Common adaptations include wheelchair ramps and doorway widening, grab rails, walk-in showers and wet rooms, stairlifts, hoists and room conversions. Financial impact is just one of the many problems.

We surveyed and spoke to people with MND and professionals to gain a better understanding of the problems associated with adapting existing homes and finding accessible homes. Our engagement project reached around 850 people across England, Wales and Northern Ireland.

Here’s what you told us:

Infographic showing results of Housing Survey in 2018 - biggest challenges reported are the time taken to access services, the lack of availability of accessible homes, the cost of adaptations or moving, and the emotional burden of adapting or moving home.

People with MND and their families have regularly reported problems with access to accessible housing or making adaptations to their home. As a result, we have raised housing adaptations or the lack of accessible housing in previous campaigns, including via our MND Costs and Champion the Charter campaigns. But we wanted to find out more to help us tackle the issues that matter the most to people with MND. So early this year, we began an engagement project to learn more about people’s experiences of accessible housing and adaptations.

Our goal was to build a clear picture of the issues affecting people with MND, and use this information to inform our work to push for improvements. We want to ensure all people with MND and their families can access the homes or adaptations they need, when they need them.

What will we do with this information?

We will keep all views or data collected stored securely in line with our legal responsibilities.

We are reviewing the results of this engagement project and considering what action the Association can and should take to address these challenges facing people with MND and their families. We’ll update our members and supporters as we develop our plans.

Stay updated

Please join the Campaign Network to be kept informed on this project and our campaigning work. You can also keep up to date on social media. Find us on Facebook and Twitter.

If you need any support, our MND Connect team offer information and support on all aspects of MND. You can call on 0808 802 6262 or email

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262