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:
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.
The engagement project
The engagement project ran from March to July 2018. This included:
- 15 engagement sessions at events around England and Wales for people with MND, their carers, families, staff, volunteers and our wider members
- three online surveys between March and July 2018 for:
- people with MND, their carers, and family members
- external professionals, including councillors, and health, social care and housing professionals
- MND Association staff
- nine phone interviews with professionals or Association members to follow up on their survey responses, and obtain their reactions to and views on the emerging findings
- meetings with external housing experts
- a Freedom of Information request sent to all councils in England and Wales
We reached around 850 people. For context, the total number of people with MND is estimated at around 4,500 people across England, Wales and Northern Ireland, though this figure does not include people in a caring role either as a family member or friend.
Top issues
Those we spoke to reported a wide range of challenges faced by people with MND in relation to accessible housing or adaptations.
A selection of the top issues that came up included:
- time taken by process
- cost of adaptations/moving
- lack of support or information offered by local services, related to a lack of knowledge, training or budget
- lack of availability of accessible homes
- the emotional burden of house adaptations or moves
How to tackle these challenges
We also wanted to know what could help tackle these challenges. Some of the suggestions were:
- improved support, services, financial help and information for people with MND and their families.
- reduction in the time taken by the process of applying for an adaptation or a new accessible home
- greater availability of accessible homes
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 mndconnect@mndassociation.org.