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MND is
brutally fast

Average life expectancy with MND is 18 months, from diagnosis. People with the illness can quickly lose their ability to walk, talk, eat and breathe unaided.

Home adaptations, such as ramps and wetrooms, are essential to help them live their lives as safely, and fully, as possible. If adaptations cannot be made, an alternative accessible home must be found.

Speed with MND is key, yet because processes take too long, and there are not enough accessible homes, many of those with the illness spend the precious time they have left fighting for a safe and accessible home. For some, this never comes in time.

 

Marie's story 

Marie’s late husband, Ian, had MND.  With no access to washing facilities, Ian had to suffer the indignity of being washed on the garden decking, while the couple waited for the adaptations they needed.  Tragically, Ian died before any of these adaptations were put in place. Read Marie’s story, and those of others affected by MND.

Read more

Our report
highlights

No Time to Lose
  • Huge waiting times (sometimes longer than the average life expectancy of MND) and reactive, rather than proactive, processes mean some people with MND die before getting the adaptations or accessible housing they need.
     
  • A chronic shortage of accessible homes, as well as no common definition around what accessible means.
     
  • Lack of formalised fast-tracking processes for people with MND
     
  • A postcode lottery of adaptations and accessible housing allocation policies meaning where people with MND live, rather than the support they need, determines the care they receive.
     
  • Inaccessible systems which are not designed to meet the needs of people living with MND.

This report contains stories and quotes from people affected by MND. These experiences might be difficult and upsetting to read.

Our calls
to action

We need processes for allocating adaptations and accessible housing that can keep pace with MND, and prioritise those with the illness. Using evidence from people affected by MND, and local authorities, our calls for action include:

  • Formalised fast-tracking processes for allocating adaptations and accessible homes for people with MND
  • A national definition of what an accessible home is
  • A national minimum 10% wheelchair accessible target for new build properties
  • Proactive planning for assessing and fitting adaptations for people with MND

You can read our full report, recommendations, and the evidence that shaped them, here.

Help us be there for people when the system fails

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If you have been diagnosed with MND and would like support in navigating the system, please get in touch with our advocacy service on [email protected], or 0141 332 3903.

 

We need everyone to take action

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