Liverpool Echo

Disabled granddad isolated due to agonising rare illness likened to 'Alzheimers in the legs'

Liverpool Echo logo Liverpool Echo 14/07/2019 18:05:47 Faye Brown

A disabled granddad with a rare genetic disease has opened up about a decade of agony living with 'Alzheimers in the legs'.

John Wellman, from Eastham, in Wirral , said he feels 'alone' and 'not wanted' due to the lack of treatment he has received for his painful, but unusual, condition.

The vulnerable 73-year-old was diagnosed with 'Inclusion Body Myositis' (IBM) ten years ago, but said the rareness of his illness means doctors and social care workers are at a loss as how to help him.

Describing the condition as 'Alzheimers for the legs' he said: "I suffer lots of pain. It's similar to Alzheimers only I get it in my legs and not my mind.

"I am very weak and I fall a lot. You feel like you are falling in slow motion but you can't stop yourself. It seems slower than it is. Other times you don't even know you are falling until you hit the ground."

a man looking at the camera: John Wellman from Eastham who suffers from a rare illness © Colin Lane/Liverpool EchoJohn Wellman from Eastham who suffers from a rare illness

What is Myositis?

The NHS website describes Myositis as a rare progressive condition that causes muscle weakness, painful or aching muscles.

Symptoms include paralysis in the feet and toes, muscle wasting, tiredness and depression.

Myositis can vary greatly from patient to patient, and few cases are identical or follow the same pattern.

For John, the pain in his muscles is often be so bad it keeps him up at night.

Desperate for help he has waited for up to five hours in Arrowe Parks' A&E department .

Regretfully there was nothing doctors could do because his condition was not classed as an accident or an emergency.

John said: "There's nothing anyone can do. When I am in pain I can't go to the walk-in centre. They will just send me to the GP. But the GP, they will say we can't help you, go to the hospital. But I  go there and get sent back home again. I just want answers."

Charity Myositis UK said most GPs have not cared for patients with IBM before and many doctors will not have heard of the condition.

John is now focusing his efforts on getting funding for a care package, but feels deflated after being told he is not eligible for this by Wirral's Clinical Commissioning Group (CCG) in the past.

The granddad-of-two lives at home with his wife who is not well enough to look after him as she also has complex health issues.

a person sitting in a living room: John Wellman from Eastham who suffers from a rare illness © Colin Lane/Liverpool EchoJohn Wellman from Eastham who suffers from a rare illness

He has been advised to do exercises to relieve his pain, but doesn't have the strength to alter the knee braces to help him do this.

John said: "I applied for CHC, that's continued health care. They told me to go to social services and pay for care, but that's £30 an hour. I can't afford that. Some people sell their homes to afford care. I don't own my home, it's a council house.

"It makes me feel bad. It makes you feel not wanted anywhere because no one wants to know. You feel like you are on your own. That's the way I feel all the time."

John feels nurses rejected his application because they didn't understand his complex condition.

However he is now more desperate for help than ever after being involved in a serious accident last Christmas,

a man looking at the camera: John Wellman said he feels hopeless © Colin Lane/Liverpool EchoJohn Wellman said he feels hopeless

The retired caterer broke his hip after being hit by a car - meaning he can no longer drive and relies on the help of others to attend hospital and GP appointments

John  said: "The problem is with it being a rare illness. People with rare illness are not treated properly. We get treated as second class because [health professionals]  don't know anything about it. It really does make you feel bad.

"It's neglect. Lots of people with rare illnesses feel helpless. They feel like they can't go on."

A spokesperson from NHS Wirral CCG said: "All applications for Continuing Healthcare Funding are assessed against a nationally prescribed process in accordance with the National Framework for NHS Continuing Healthcare and NHS Funded Nursing care.

"Unfortunately we are unable to comment on any individual application. However, any enquiries or concerns from applicants for CHC will be responded to as is our usual process. "


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