A dad with a rare muscle disease says psychological support for people with life-changing conditions needs to improve.

Andrew Robertson, 37, has lived with limb-girdle muscular dystrophy for 20 years, which causes shoulders, hips and thighs to weaken and waste over time and means he relies on a power wheelchair to get around.

The father-of-one, who lives with wife Joanne and five-year-old son Thomas in Churchill Road, Canterbury, says that although he has always been determined not to let his condition beat him, it has at times taken a toll on his mental health.

“I was diagnosed just as I was about to do my A-levels,” he said. “I remember the consultant saying three things – that it’s not treatable, it’s not curable, and the only thing you can hope for is to improve your quality of life.”

After 10 years, Andrew, now managing director of electrics business R&B Star, lost the ability to walk and as his condition progresses he has become increasingly aware of its impact on his family.

“We are able to cope with it, but it’s not straightforward,” he continued. “When Thomas was a baby, I wasn’t able to get up to help with night feeds, and if I was ill at the same time, it was too much for anyone to cope with.

“I need carers, and sometimes that can feel like you’re a third wheel. The family impact is a big thing. It just takes away the spontaneity.

“Every time we go to a hotel, we can’t just go online and book a room. We have to phone in advance and explain that we need a wet room and room for my carers, and 80% of the time, we arrive to find out there has been some kind of problem, even though we’ve checked multiple times. That creates stress.”

He hit a low point 18 months ago when a downturn in business coincided with Joanne, an occupational therapist, having to take time off work to undergo back surgery.

The couple had overstretched themselves doing up their bungalow and found themselves with £150,000 of debt and mounting credit card bills, and at the same time Andrew developed diabetes and a heart condition he believes was linked to stress.

Eventually, he was offered telephone counselling sessions by King’s College Hospital, through a trial, with a therapist familiar with muscular dystrophy.

“She was saying to me, these feelings are OK. They’re normal,” he said. “I feel like it was just scraping the surface, but it did give me a boost. The NHS should put psychological support on prescription, almost, for people diagnosed with muscular dystrophy. It should also be an ongoing thing.

“It’s amazing that I had to get to that low point before it was offered. It’s not just myself who is impacted – it’s Thomas, and my wife. I’m very hard-willed about the condition and it takes a hell of a lot to break me. I’m lucky it doesn’t affect my heart, lungs, and other parts of the body.

“But I’ve met parents of five or six-year-olds who worry about how to tell their children they have a life-limiting condition. That’s unbelievable that there’s no specialist support for people in that situation.”

The charity Muscular Dystrophy UK has released a report recommending more clinical psychologist time for patients with muscle disease and regular screening for mental health problems.

Its chief executive, Catherine Woodhead, 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.

"This reports shows how imperative it is to press for better psychological care for the devastating impact that muscle-wasting conditions can have on all family members - parents, siblings, children and grandparents.

"We want to ensure that changes come into effect. There are areas for improvement that 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."