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Jim's story

Jim Maxwell came to the brink of homelessness before receiving an accessible home that had lain empty for over a year.

Council refuse recycling worker Jim Maxwell was living in Montrose with his partner when he was diagnosed with MND in 2019. The diagnosis sent shockwaves through their relationship, causing the pair to separate and Jim to return to his home city of Edinburgh.

It was here that Jim began a distressing search for accessible housing while his condition continued to deteriorate, limiting his ability to use his arms and legs.

Jim said: “I started having symptoms five to six years ago. My partner noticed that my right arm was twitching and, as time went on, I started to get “dead arm” feeling, with pins and needles. Things generally got worse from there. We had arguments because of my health and our relationship fell apart and I moved into my sister’s second floor flat, which was our mother’s former council flat, in Edinburgh when I was diagnosed with MND.

“My sister lives in Spain but, after eight months of living there and getting nowhere applying for social housing in Edinburgh, my sister asked me to move out so she could sell the flat, meaning that I was technically going to be homeless.

“Edinburgh has a very complicated bidding system for social housing and accessible homes are even rarer. I was given the top ‘Gold Priority’ status and even that didn’t get me anywhere.

“The number of hoops I had to jump through was absolutely ridiculous. I appreciate that COVID may have been a factor, but a lot of times I was left speaking to automated machines, sending emails which got no replies, it’s incredibly stressful. That’s when I decided to reach out to MND Scotland for help.”

Jim was referred to the charity in July 2020 for advocacy support. From there, Advocacy Worker Carla began liaising directly with Edinburgh City Council's Home Accessibility Referral Team. It was only with Carla’s persistence that the bidding system was bypassed, allowing Jim to be allocated a home through direct match. It was later found out that the property had been lying empty for a year.

“I was allocated the house in November 2020 and after the Council adapted it, and I arranged painting and decorating, I moved in in January 2021. The property itself is ideal in that it’s got 2 bedrooms, which will allow a carer to sleep over when 24-hour care becomes necessary, and it’s got a wetroom.

“The other day I had a bad fall on the street; luckily, there were strangers there to help me up. I worry what life would be like if I was still stuck in a dangerous second-floor flat with my current mobility. Worse, if not for Carla and MND Scotland, I think I would have had to declare homelessness and that just isn’t right.”

Now is the time for change

Jim’s story highlights how the system is flawed.  Bidding systems, and long waiting lists, don’t work for people with rapidly progressing terminal illness.

Local authority teams must proactively work together to ensure empty homes, which could be made accessible, are directly matched to those who need them most, such as people with MND. We are calling for:

  • Fast-tracking people with MND
  • Empty homes to be made accessible
  • Space and quality standards for new homes
  • National accessible housing target (10% minimum)

Read our full manifesto.

Now is the time to be heard

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