Cumnock man living in caravan with terminal illness due to lack of accessible housing

A terminally ill Cumnock man is speaking out to highlight the lack of accessible social housing in East Ayrshire following his devastating diagnosis of Motor Neurone Disease (MND) in October 2017.

Drew McCartney (67) has spent the last 9 months living in a tow-caravan in Castle Douglas, over an hour’s drive from his home in Cumnock. He decided to make the move after deciding that his home is no longer safe for him to live in as his health deteriorates.

Drew, a retired valeter and driver at a local Vauxhall dealership, is married to wife Helen (64) who cares for him on a near full-time basis. The couple, who are parents to Sharon (44) and Paul (41), are now planning to spend the duration of the winter in the vehicle, because they have not been able to find an accessible home to meet Drew’s current or future needs.

It was during the festive period, in December 2016, when Helen first noticed that something was amiss with Drew’s health.

Drew said: “It was around Christmas time in 2016 that Helen said to me that I was walking with a limp. I decided to go to the doctors the following March because it had gotten to the stage where my feet were getting very cold where I was having trouble moving them. I thought that it might be a circulation problem, but after months of tests, scans and consultants, I was told that I had Motor Neurone Disease.

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided.

“It was a devastating blow, and it’s taken a long time to come to terms with my diagnosis. I’ve tried to focus on living the best quality of life I can, but after six months it became clear to us that we couldn’t go on living in our two-storey terraced house”

Drew and Helen own their 3-bedroom 6-in-a-row terraced house in Cumnock, which he now feels is unsuitable as his health has declined.

Drew now has limited mobility in his legs and poor balance, making navigating stairs hazardous. Drew also struggles with fatigue, a lack of energy and experiences cold feet where he has lost movement.

“We began the process of applying for accessible houses in the area, but we haven’t gotten anywhere due to a chronic lack of social housing. During my time in the house I had to start sleeping on an inflatable mattress on the living room floor because I couldn’t get upstairs to the bedroom or bathroom. If I wanted to leave the house, I had to be carried because there are stairs down to my garden as well.”

The family house has now been on the market for 6 months. Until they can sell the house, the family is completely reliant on being prioritised for social housing to move into an accessible home.

It was in March that Drew decided that he had no choice but to move out of the family home and into the family’s holiday caravan in Castle Douglas, which has no running water and requires barrels of water to be filled. This has now turned into a permanent residence for Drew.

Drew said: “The caravan isn’t ideal, but at least everything is on the level, which allows me to keep some of my independence.

“My family isn’t happy that Helen and I are down here because they want to help care for me, but at this stage I’m afraid that if I go back home, I’ll become trapped downstairs and I’ll never leave that house again.

“I realise that there are a lot of disabled people in the same position as me, but I know that my condition is only going to get worse and I don’t know what else I can do.”

Susan Webster, MND Scotland’s Head of Policy and Campaigns, said: “I’d like to thank Drew for his bravery in speaking out and highlighting the shortage of accessible homes.

“The festive period is a time when we should all be in a comfortable home, which meets our needs, surrounded by friends and family. Someone like Drew should not have to live in a caravan, miles away from his home, family and care network, because he feels he has no other options.

“Our Advocacy worker has been supporting Drew and his family for many months, trying to secure an accessible home, but after little progress with Drew’s case, and several others, it’s very clear that there is an urgent need for many more accessible homes across Scotland.

“In addition, systems and processes must be put in place to ensure that those with terminal illnesses, like MND, are top of the list when accessible properties do become available and are fully supported to secure them without delay.

“We will continue to advocate on behalf of Drew and make the case that people with MND don’t have time to wait.  They must be enabled to live in accessible homes, when they need them, and to spend special times like the festive season, at home with their loved ones and support networks close by.”

If you have a story to share, get in touch with us at communications@mndscotland.org.uk.