A Lanarkshire widow has told of her frustrating fight for help during her late husband's battle with Motor Neurone Disease.
Marie Cartwright spent her last precious months with husband, Ian, washing him on their garden decking with buckets of water, while pleading with their local authority to get a wet room and essential adaptations installed.
Tragically, Ian died, aged 62, before any of these were put in place at his Uddingston home.
Now, bereaved wife Marie, 63, has joined MND Scotland’s call for government action on an accessible housing crisis.
The charity has today launched a new report highlighting Scotland’s failing housing and adaptations systems for people like Ian and Marie, and is calling for Scottish and local government action now.
Due to Ian’s deteriorating mobility, it quickly became clear that numerous home adaptations were required, including an external ramp, getting the patio doors replaced, a garage conversion to accommodate a wet room and an appropriate hospital bed.
A former Police Constable, and latterly an emergency response driver, Ian was a man who dedicated his working life to serving and helping others, but unfortunately Ian felt that when he was in need of help, the support was not there.
MND Scotland’s report states: “Too many people with MND spend the precious time they have left fighting for a safe and accessible home, and for some, this never comes in time”.
People with the disease can quickly lose the ability to walk, talk, eat and breathe unaided, with the average life expectancy with MND being just 18 months from diagnosis.
Ian, a proud dad of three, only lived for nine and a half months after he was diagnosed.
Marie said: “That was precious time that we were supposed to spend making memories together. Instead, we spent most of it frustrated and stressed out, battling to get adaptations made to our home.”
The couple sought planning permission for the garage conversion.
And this process was also slowed down considerably by the planning committee cancelling two meetings, six weeks apart.
Due to drawn out and time-consuming exchanges with the local authority, no adaptations were fitted before Ian sadly passed away in October 2019.
Marie added: “Before Ian was diagnosed with MND, I had very little understanding about the condition or how rapidly it goes through a person and I think our local council have the same issue.
"They seem to have no real concept about just how little time somebody living with MND has or how urgently they need these adaptations to be made.
“Two huge problems we had was with having our garage converted and the ramp installed. We were told that we needed planning permission for the ramp, but we didn’t get permission so it went on and on and on.
“For nine and a half months my husband lived in our home with no shower facilities at all. We had to wash him out on the decking with buckets of water.
"As if he wasn’t suffering enough, now he couldn’t even wash in comfort or with privacy. There is no dignity in that whatsoever.
“On top of that, he had to use a commode in the living room and was sleeping in a hospital bed that was too narrow to support him properly. When he was laid down, he had to rest his arms on tables at the side because he couldn’t fit his whole body into the bed properly.
"Where were his human rights there? No shower, no bed? They have no idea what we go through on a daily basis.”
Marie continued: “I personally feel that there was a barrier to everything we tried to do, and nothing was ever fast enough.
“If someone needs adaptations made to their home, then they need to happen as soon as possible. Get everything looked at and sorted as soon as they are diagnosed because as anyone who has lived experience with MND will tell you, time is not on our side.
“The bitter irony was that I had been trying to get two new doors that opened out fitted in the conservatory for months and the day after Ian died, the company came to fit them.
"That’s how long it took. Everything just takes too long. The time you have with that person is precious.”
MND Scotland’s report sets out recommendations for Scottish Government and local authorities based on research with people affected by MND.
These include: fast-tracking applications for adaptations for people with MND; anticipatory care planning for adaptations; increased investment and resources for adaptations; and ensuring information on adaptations support is clear and publicly available.
Susan Webster, MND Scotland’s Head of Policy and Campaigns, said: “Marie and Ian’s story highlights why it is essential that people living with MND are fast-tracked for adaptations, which must be planned for from the point of diagnosis.
“Speed with MND is key. Marie and Ian’s experience shows the devastating consequences of a system which does not recognise the speed at which this degenerative terminal disease progresses.
“Everyone deserves to live in their home safely and with dignity, and the current systems and processes are failing people with this devastating illness.
“Now is the time for change. We need processes for allocating adaptations and accessible housing that can keep pace with MND, and to prioritise those with the illness.”
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