A FARNHAM mum has spoken out about her son’s crucial need for support to come to terms with his muscle-wasting condition, as a report calls for immediate action to improve access across the country.

William Cobbett Primary School pupil Harry Barnley, aged nine, was diagnosed with Duchenne muscular dystrophy at the age of five.

According to his mum, Sue, he has started to ask tough questions such as “Why me? I hate my legs” and “When will I be in a wheelchair?”.

Duchenne muscular dystrophy causes muscles to weaken and waste over time, leading to increasing and severe disability.

Because of a lack of psychological support available, Sue pays for Harry to see a private clinical psychologist. At £100 an hour, the cost is very expensive.

Sue said: “It’s easy to overlook the psychological impact of muscle-wasting conditions.

“The physical symptoms are clearly visible but the emotional impact is often well hidden.

“That is until you reach crisis point. It’s so distressing to see the emotional turmoil your child is going through.

“It’s also hard to overstate just how important it is for patients and their families to have access to mental health professionals with an understanding of neuromuscular conditions.

“Families are being forced to raid their savings to see the handful of psychologists in the country who do have a knowledge of muscle-wasting diseases. How can this be right?

“We urgently need to improve the knowledge of muscular dystrophy and neuromuscular conditions among mental-health staff.”

An inquiry by the All Party Parliamentary Group for Muscular Dystrophy heard emotive testimonies from adults with neuromuscular conditions, as well as parents of children with life-limited conditions, providing evidence of the lack of psychological support for them and family members.

Catherine Woodhead, chief executive of Muscular Dystrophy UK, said: “Our Mental Health Matters campaign aims to educate psychologists and health professionals about the crucial need for psychological support for people with neuromuscular conditions.

“We want to ensure changes come into effect. There are areas for improvement we have identified which need not be too costly.

“Mental health is supposed to have parity of esteem with physical health, yet improvements have been far too slow.”