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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