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'Urgent' need for wheelchairs cash


Some disabled people are being confined to their beds because of poor wheelchair services, a charity has warned.

The Muscular Dystrophy campaign said there are “substantial gaps” in specialist wheelchair provision for people with the condition.

The charity’s new report Get Moving said there is “urgent” need to improve provision of specialist chairs which enable those with the muscle-wasting condition to work, socialise or even carry out simple day-to-day tasks.

The report highlights the case of one patient who suffers from congenital muscular dystrophy who was confined to his bed for almost a month when his powered wheelchair stopped working.

Sulaiman Khan, 28, was unable to get out of bed for 26 days in July, the charity 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,” he said.

“Owing to my condition, I have severe scoliosis of the spine and without the right support I am in constant pain. These wheelchairs are a necessity, not a luxury - without it I am hugely dependent on other people. I lead an active lifestyle. Having to essentially put my life on hold was frustrating, and made me feel useless.”

The report, which collated data from 600 people with muscular dystrophy or their carers, found that many are facing waiting times of six months for their first powered wheelchairs or replacement chairs - with 15% waiting more than a year.

And half said they did not receive full NHS funding for their wheelchair.

The report cautions that delays in supplying specialised chairs - which are designed to fit individual bodies - can not only confine them to their homes but it can also have an impact on health.

The charity is calling on NHS officials to cut waiting times for specialised wheelchairs to no more than 18 weeks.

It is also calling on the Department of Health to increase the budget for powered wheelchairs - which can cost upwards of £17,000 each.

“We are not talking about luxury pieces of equipment here, these powered, specialised wheelchairs are essential to people’s independence and long-term health,” said Nic Bungay, director of campaigns, care and information at the Muscular Dystrophy Campaign.

“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 are given the support they need to fund suitable equipment.”


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Readers' comments (2)

  • Its not just muscular dystrophy patients that are losing out, everybody with mobility problems are.

    It would help if everything was not so cut to the bone and services switched to private providers who just do not perform a good service. Centres for equipment are now so far apart with God knows how many hurdles to go through that no one is actually joining the dots.

    The problems of actually receiving equipment which is stored often 100's of miles away; and importantly collected when it is not needed needs to be tightened and made more local.

    Patients relatives often complain that expensive equipment is cluttering their garage as despite efforts cannot get anyone to pick it up, and they have nowhere to take it themselves as the services are now so elusive even staff do not know where to go for information.

    It is not unusual to see expensive previous NHS equipment in car boot sales as people are so exasperated at trying o get it picked up. After my mum died we saw a van collecting equipment in the next street, and when we approached him to ask if he would take a push wheelchair, zimmer, food trolley and raised toilet seat, he advised us that we have to "go through the proper channels and raise a requisition......" even though he had two thirds of his van empty.

    Its about time we stopped franchising out these type of services, which are full of jobsworths; and management only concerned with getting ticks on paper so that they will be paid.

    When we rang (for the 5th time) we offered to take it to the equipment store ourselves, only to be told the local depot was 50 miles away and everything had to be requisitioned by an office over 130 miles away.

    In the end, we gave the equipment to other people who were having difficulty with mobility so that it wouldn't get wasted.

    By linking the services appropriately and keeping things local, would cut thefts and help with incompetency. And people would not become frustrated and just give up.

    When a GP tries to order equipment, it takes the best part of a couple of days, particularly in staff hours in phone calls trying to find out where to go to and how to make a referral.

    There wasn't this problem when these services were run by the NHS and not "provider services."

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  • 18 weeks is still such a long time to wait for a wheelchair. I agree the budget should definitely be increased; as you said this equipment isn't a luxury it's a necessity for people's mobility and it shouldn't have to cost the family this much.

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