Poor treatment could kill muscle disease sufferers

A MUM whose son suffers from a muscle-wasting disease is warning ignorance surrounding how to treat the condition could put lives at risk.

Phillippa Farrant, from Eastbourne, took part in research carried out by the Muscular Dystrophy Campaign, talking about her experiences of hospital treatment.

The subsequent report, released this week, found hospital staff across the south are failing to seek critical advice from specialists when deciding on appropriate treatment.

Almost 5,000 babies and adults across the south east suffer from a form of muscle-wasting disease, including Phillippa’s son Dan, 20, who has a condition called Duchenne muscular dystrophy. His illness gradually causes the muscles to weaken and waste away.

His mum said, “Dan goes in and out of hospital quite often and has received some good care but other times it has been horrifying.

“Boys with Duchenne muscular dystrophy get are prone to chest infections, partly because they become unable to cough and clear their lungs.

“This August, when I took Dan into the hospital with a chest infection they said it was just pain caused by him coughing a lot – a ridiculous idea as he has been physically unable to cough for years.

“I told them they were wrong and asked them to call the specialist but they refused.

“Delays in treatment like this are really dangerous for boys like my son. I am furious they played with his life in this way.”

The Muscular Dystrophy Campaign examined hospital visits experienced by nearly 500 patients.

It found repeated cases of what it called unacceptable treatment which experts argue could have been avoided if doctors had simply taken advice from specialists.

The charity says that in cases where patients are admitted to hospital for problems unrelated to their existing condition, doctors should speak to neuromuscular specialists to make sure the appropriate treatment is given, rather than assuming a potentially dangerous catch-all approach.

It also calls for a network of information and advice sharing to be set up in the south east.

Nic Bungay, director of care, support and campaigns at the Muscular Dystrophy Campaign, said, “We’ve heard appalling accounts from mums like Phillippa, telling us about the damaging care that their children have received in hospitals simply due to a lack of knowledge about muscle-wasting diseases – information that is only a phone call away by speaking to neuromuscular specialists.

“We’ve seen the enormous difference clinical networks can make to people’s experiences of hospital care, with the one existing network in place in the South West improving co-ordination between specialists for patients with these rare conditions.

“Our report underlines just why it’s important to establish similar networks in the rest of the country. As the NHS is reformed, the opportunity to do so is now.

“By not taking these necessary steps, the NHS is putting the lives of vulnerable families at risk.”

The 45-year-old’s son was treated, not at the DGH, but in a hospital in Kent.