26 Nov 2013

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.

News

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.”