A DISABLED man from Woking forced to spend £13,000 towards his specialised wheelchair because of a lack of NHS funding has backed a national campaign which calls for radical improvements to wheelchair services.
Mike Moorwood, 30, who uses a powered wheelchair, was one of hundreds of disabled people sharing their experiences of wheelchair services for Get Moving, a report launched by the national charity, the Muscular Dystrophy Campaign.
He was one of a number of people affected by muscular dystrophy (or a related condition) who met with MPs and NHS leaders in Westminster on Tuesday to compel health leaders to cut waiting times and increase the budget for specialised wheelchairs – which can cost more than £17,000.
The campaign warns that as well as confining people to their homes, delays in supplying specialised chairs are having a severe impact on the health and well-being of sufferers, and can lead to pressure sores, contractures and skeletal deformity. Mike has Duchenne muscular dystrophy, which causes muscles to weaken and waste over time, increasing disability.
He said: “My condition means my spine and neck need to be supported properly, so having the right wheelchair is essential.
“However, it is not possible to get a specialist wheelchair on the NHS that caters for my needs; the basic wheelchairs provided are unsuitable for me, and lead to stiffness and 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 I can’t get NHS help in funding any repairs.”
The Get Moving report reveals that many people with severe muscle-wasting conditions are facing waiting times of six months for their wheelchairs or replacement chairs – with 15 per cent of them having to wait a year or more.
The study, which collates the experiences of 600 people affected by muscular dystrophy and related conditions, also found that almost half of them do not receive full NHS funding for their wheelchair.
It also revealed that a lack of understanding of neuro-muscular conditions among NHS decision-makers often means that the people affected are denied the wheelchair that best suits their needs – almost one third are forced to use unsuitable wheelchairs.
There are serious concerns over the current assessment process used by occupational therapists, which the Muscular Dystrophy Campaign fears is failing to take into account the changing needs of individuals from different age groups and lifestyles.
Director of campaigns, care and information at the Muscular Dystrophy Campaign, Nic Bungay, said: “We are not talking about luxury items of equipment here, as these special powered 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 in the South East urgently need to work alongside people living with muscle-wasting conditions, to ensure people like Mike are given the sup-port they need for funding
More than 70,000 people across the UK suffer from muscular dystrophy or a related neuromuscular condition.