Wheelchair ‘would give my son his life back’
A mother says her disabled son, who has a severe muscle wasting condition, is being denied the chance to leave the house because of lack of funding for an appropriate wheelchair.
Matthew Knowles, 22, who has Duchenne muscular dystrophy, a severe muscle wasting condition, has been housebound for almost two years.
His mother, Tina Knowles, told Channel 4 News that he needs a suitable wheelchair which will allow him to leave the house.
She said: “It’s like living in a prison. Matthew is fed up with being indoors.
“He misses being able to go out for a meal and going to shops.
“Having a wheelchair would mean having a life again.”
Six-month wait
According to the Muscular Dystrophy Campaign many people with severe, muscle-wasting conditions are facing waiting times of six months for their first powered wheelchairs or replacement chairs – with 15 per cent waiting more than a year.
Those with muscular dystrophy or a related condition, and their families, are struggling to find thousands of pounds to cover the cost of special wheelchairs, the charity said.
It’s like living in a prison. Matthew is fed up with being in doors. Tina Knowles
Sulaiman Khan, 28, who has congenital muscular dystrophy, said: “Being in bed for the best part of a month really took its toll on my body and my mental health – I can honestly say it was one of the lowest points of my life.
“These wheelchairs are a necessity, not a luxury – without it I am hugely dependent on other people. I lead an active lifestyle.
“It is important to me. Having to essentially put my life on hold was frustrating, and made me feel useless.”
It is estimated that 8,000-10,000 people with muscular dystrophy or a related condition use powered wheelchairs.
Some 70,000 disabled children and young people in the UK waiting for a wheelchair that fits their young lives, the charity said.
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‘Constant pain’
Mike Moorwood, 30, who also has Duchenne muscular dystrophy, said: “My condition means my spine and neck need to be supported properly – having the right chair is essential.
“However, it is not possible to get a specialist wheelchair that caters for my needs on the NHS. The basic wheelchairs provided are unsuitable and lead to you feeling stiff and in constant pain.
“I had to buy a chair privately and was given a £4,000 NHS voucher towards the cost. My family had to find the £13,000 balance.
“I had no real choice but to get my own chair, but buying one privately means that I now can’t get NHS help in funding repairs.”
Specialised wheelchairs
Nic Bungay, from the Muscular Dystrophy Campaign, said: “We are not talking about luxury pieces of equipment here. These powered, specialised wheelchairs are essential to people’s independence and long-term health.
“We cannot expect people to rely on fundraising or finding thousands of pounds to pay for something so vital. Some chairs are costing families a small fortune – comparable to a mid-range car.
“NHS decision-makers and clinical commissioning groups urgently need to work alongside people living with muscle-wasting conditions to make sure that shocking experiences like Sulaiman’s never happen again and people like Mike are given the support they need to fund suitable equipment.”