This week I alerted parliament and ministers to shocking stories from people living with muscular dystrophy.
I am passionate about this issue after a lifetime in a family devastated by muscle disease. My brother and sister, who suffered a form of muscular dystrophy, had lifelong disabilities but not very long lives. It is also a major social policy issue.
I therefore initiated a Commons debate about how families are forced to wait years for their wheelchairs, pay substantial costs themselves or simply endure a wheelchair that does not fit or causes them pain.
They have been let down by Wheelchair Services who do not seem to understand their rare and complex conditions.
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.
Many people who have waited for years to receive their powered wheelchair or made to pay to get a suitable wheelchair told us about their experiences.
Unfortunately, there has been little improvement nearly a year later so I took the issue back to the Commons.
The Muscular Dystrophy Campaign says that the standard of care for such people provided by Wheelchair Services is simply unacceptable.
Too many wait far too long for electric wheelchairs while others are denied essential features that increase independence and improve their quality of life. Many have to shell out thousands of their own money for these vital pieces of equipment.
One young man had to improvise his own head support with a Pringles tube and some sponge.
Families deserve better but this will also save the state money. The right chair at the right time can prevent pressure sores, contractures or skeletal deformity. This reduces NHS costs by avoiding expensive operations and inpatient treatment. It's a false economy to skimp on these services.
I told the Minister that NHS decision-makers should work alongside those with muscle disease, the Muscular Dystrophy Campaign and health professionals to ensure that all adults and children living with a neuromuscular condition and in need of powered wheelchairs experience a far better service.
A decent society is judged by how it treats the more vulnerable and I shall maintain the pressure on this matter throughout this parliament.
Newcastle Chronicle and Journal
| Promoted by Paul Foy on behalf of Dave Anderson, both of St Cuthbert's Church Hall, Shibdon Road, Blaydon, NE21 5PT |