Harpenden disabled man’s wheelchair campaign after NHS refusal
PUBLISHED: 12:00 08 April 2017
A housebound disabled man from Harpenden has spoken out about the struggles he faces and his need for an electric wheelchair, which the NHS will not supply.
Mike Joiner, 51, has a rare condition called Addison’s disease which affects only 8,400 people in the UK, according to the NHS.
After steroid treatment for a separate condition in his teens, Mike’s body stopped producing enough of the hormone cortisol by itself – it is essential for many functions like blood pressure and sugar levels, formation of memories, and controlling salt and water balance.
It means Mike is fatigued, sometimes confused, and has little body weight and muscle mass, among other symptoms.
In 2014, before diagnosis, Mike went on a health kick and was initially pleased to see immediate results when he starting losing weight.
By November 2015, after shedding about 35kg in 18 months, doctors diagnosed him with the adrenal gland disease and his life was forever changed.
Last year, Mike’s blood pressure was so low he collapsed, his organs started to fail, and had to spend five months in hospital having surgery so he could eat and drink.
During this time, Mike’s weight plummeted a further 25kg, and has dropped another 10kg since returning home.
He now has so little energy or muscle mass that both his occupational therapist and physiotherapist do not recommend pushing himself in a wheelchair, as it would exert him too much.
This has left Mike housebound, which he described as frustrating and depressing.
He said: “It was really a shock to the system after my diagnosis, I now had a condition that I had never heard of and then finding out it was so rare and the implications of the condition are so wide - I have to carry around an emergency injection kit of cortisol all the time.”
If Mike breaks a bone, he could die in two hours without his cortisol shot.
The NHS has told Mike that he does not meet the criteria to get a wheelchair because he only needs it when going outside - his flat isn’t big enough to manoeuvre a wheelchair around indoors.
In order to buy an electric wheelchair and give Mike his independence back, he needs to raise £2000.
He added: “Having the ability to get out when I want will have such a massive and positive impact on my life, not having to rely on others would make such a difference.”
To donate to his cause, click here.