Dave Anderson, MP for Blaydon, and chair of the All Party Parliamentary Group for Muscular Dystrophy has written the following article, which originally appeared on www.epolitix.com in advance of his adjournment debate on government policy for wheelchair services.

“My debate today will bring to the attention of ministers shocking stories from people, living with muscular dystrophy: families forced to wait years for their wheelchair, to pay hundreds or thousands of pounds towards the cost or simply to put up with a wheelchair that does not fit or causes them pain.

These families have been let down by wheelchair services who do not understand their rare and complex conditions and focus instead on short-term penny-pinching at long-term cost, to both patients and the NHS.

Last year, the All Party Parliamentary Group for Muscular Dystrophy, which I am honoured to chair, produced a ground-breaking report highlighting shocking gaps in services for people living with muscular dystrophy and related neuromuscular conditions: The Walton Report.

During the extensive inquiry that preceded the report, we heard time and time again from people who have waited for years to receive their powered wheelchair, or made to pay to get a wheelchair suitable for their complex condition.

Unfortunately, nearly a year on from the publication of the Walton Report, there has been little improvement.

A recent report from the Muscular Dystrophy Campaign makes clear that the standard of care provided by NHS Wheelchair Services is simply unacceptable for people with muscle disease and their families.

The evidence shows that across England too many people are forced to wait far too long for the electric wheelchairs they need while others are denied essential features that aid independence and improve quality of life.

Scandalously, patients and their families are often abandoned by the NHS and left to pay for these vital pieces of equipment themselves, at a cost of several thousand pounds.

Like me, you will be very angry about the experiences highlighted in the report – it is appalling that a young man in Plymouth has had to improvise his own head support with “a Pringles tube and some sponge”.

Not only do families deserve a better service, this will also be far more cost-efficient at this time of limited public spending. Getting the right chair at the right time can prevent the development of pressure sores, contractures or skeletal deformity. The provision of the appropriate chair can actually reduce the cost to the NHS in the long run, decreasing the need for potentially expensive operations and costly inpatient episodes.

I hope that NHS decision-makers decide to work alongside people living with muscle disease, the Muscular Dystrophy Campaign, clinicians and health professionals to ensure that all adults and children living with a neuromuscular condition, and in need of a powered wheelchair, experience a far better service in the future.

I am passionate about this issue as I have spent a lifetime in a family that has been devastated by muscle disease. My brother and sister, who were affected by a form of muscular dystrophy, had lifelong disabilities but not very long lives.

Together with people living with muscle disease and their families, I am calling on the new government to take urgent action to fix this failing service.”