Charity's advocacy helps MND patient

Being diagnosed with a terminal illness is bad enough but add being trapped for over a year at home due to a lack of provision of accessible housing, and it's the stuff of nightmares.

Former fitness instructor Paul Smith is on the left

Paul Smith was a fit and healthy 52-year-old when he was diagnosed with Motor Neurone Disease in December 2016. His decline was rapid and in a matter of months the former Physical Training Instructor in the Royal Artillery went from being fighting fit to housebound.

Motor Neurone Disease is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles which can cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. Today Paul has extremely limited mobility, impaired speech and uses a ventilator to help him breathe. The former body builder and martial arts champion said: “You can have an itch and you just can’t scratch it. Sometimes I’ll get something in my eye and it stings, but I just have to suffer it until it passes.”

After his diagnosis Paul and his partner Vikki Williams, 47, notified Edinburgh City Council of his declining health in the hopes of being prioritised for accessible housing but with with none available Paul was stuck in their two-storey tenement flat until two weeks ago. Paul said: “I became a prisoner in my flat because I couldn’t go up and down the stairs. Living with MND is your worst nightmare; it’s like wearing a lead suit. Your brain knows what you want to do, but you can’t move to do it.

“If I need to go to the toilet, I have to try and hold it in until Vikki is home because I’m not able to pull my clothes down and back up. I can’t feed myself either; it’s the most horrendous thing a human can have.”

Originally the couple were told that their situation did not warrant an assessment for top-level housing priority, due to the fact that Paul still had the use of his legs. Vikki attempted to explain the rapidly progressing nature of MND and the fact that time would not be on their side, with no avail.

Over the course of Paul’s progression with MND, Paul and Vikki had bid for a total of 23 flats within a manageable distance of their existing support network. Out of desperation, the couple had even bid for flats that were not fully accessible, but which would represent only a marginal improvement for Paul.

At breaking-point, the couple found out they were finally successful in a bid for a ground-floor flat in late March 2018, but their problems didn’t end there as the couple were at risk of losing their care package with a move. Thankfully, MND Scotland stepped in with their new advocacy service and secured everything they needed to make the move to the ground floor flat. It was a huge relief for the couple who can now settle into their new normality.