Muscular Dystrophy Patient Highlights Gap In NHS Care

A man with muscular dystrophy from Weston has highlighted the gap in NHS care for adults with the condition.

Steve Ledbrook says people stop getting the necessary support once they turn 18 and are “thrown out of the system”.

His physiotherapy treatment ended when he became an adult, forcing him to travel 100 miles to see a specialist.

As a result of his lobbying, a group of cross-party group of MPs produced the Walton Report backing up his personal experience calling for more support.

‘Decade of difference’

Steve suffers from the muscle wasting disease which affects certain parts of his body, like his ankles, wrists and neck.

When Steve was at school he attended regular physiotherapy sessions however when he left at 16, he could no longer receive the treatment on the NHS.

“When I was an adult, I was told I didn’t need any more help from the NHS and that I could find my own ways of getting physio.”

Young disabled people, like all young people, don’t just become an adult overnight Richard Pitman, Compass Disability

He was forced to see his doctor every time he felt he needed physiotherapy but this caused his condition to gradually deteriorate.

“It was a constant physiotherapy cycle. I went back to my doctor who’s known me since I was a baby, and he said I’m surprised things have not got better.”

Steve got involved with the muscular dystrophy campaign and after a decade this led to the Walton Report – an all-party parliamentary report, which reflected his and others’ experiences across the UK.

The report found that in the south west, people with muscular dystrophy lived to the age of 18 on average while in the north, the average age was in the 30s.

“That’s over a decade of difference – it was shocking really,” said Steve.

“It showed that drastic improvements needed to be made because of a lack of care in physiotherapy.”

‘Bang the table’

The South West managed to secure £1m in funding as a result of this work for new consultants and physiotherapists but Steve believes more should be done to help others in the same situation.

According to the charity, Compass Disability, many people face problems in getting support for their loved ones once they turn 18.

Richard Pitman, chief executive, said: “The trouble is when you’re having a service, naturally young disabled people, like all young people, don’t just become an adult overnight, so it’s not about having a change of services overnight.

“Sometimes that can happen too quick for young people to feel comfortable through that process.”

He says the best way is to “bang the table” and make your voice heard.

“Make sure you’ve people supporting you in place, and speak to organisations like ourselves so you know what sort of service you should be receiving.”