Staff’s accolade for treatment of rare illness

Experts from the Muscular Dystrophy Campaign carried out a rigorous assessment of neuromuscular services provided by staff at Leeds Children’s Hospital which becomes only one of five units in the UK to be given the accolade.

Around 70,000 children and adults in the UK have muscular dystrophy and related conditions which cause muscles to weaken over time, leading to worsening disability and in some cases significantly affecting life expectancy.

Owing to the rare nature of the conditions, the charity said GPs, nurses and hospital staff often struggled to guide youngsters and their families affected, but access to specialist services including expert guidance on managing the conditions, physiotherapy and respiratory equipment could make life changing and even life saving differences to patients.

Tracey Franklin’s son Jack, now 17, has been treated for the incurable Duchenne muscular dystrophy in Leeds since he was diagnosed nearly 14 years ago.

She said: “The care that the neuromuscular team in Leeds provide is second to none.

“Having someone there who genuinely understands what Jack is going through and is able to help with all the problems, health-related and otherwise makes an enormous difference.”

Nic Bungay, director of campaigns, care and information at the charity, said: “Unfortunately for many children in the UK
affected by muscular dystrophy and related neuromuscular
conditions, support is wholly
inadequate with patients 
struggling with misdiagnosis,
inappropriate medical treat-
ment and lack of specialist support.

“Leeds has set precedence for other centres in the UK and this recognition is a tribute to the tremendous hard work of these health professionals.”