Evelina London recognised as Centre of Excellence for people with rare muscle and nerve conditions

Evelina London Children's Hospital has received prestigious Centre of Excellence status from a leading charity for the outstanding care it provides for people with muscle and nerve conditions.

The neuromuscular service, which has been recognised by Muscular Dystrophy UK for a second time, is one of 24 centres to be given the award. The hospital also received recognition from the charity in 2019.

Neuromuscular conditions like muscular dystrophy, myopathies and Charcot-Marie-Tooth disease can cause a range of symptoms including loss or alteration of sensation, pain, muscle weakness and fatigue. Some people may also experience problems with their heart and breathing.

According to the charity there are more than 60 rare progressive muscle-weakening and wasting conditions affecting 110,000 children and adults in the UK.

Finley O'Donoghue, 13, from the Isle of Sheppey in Kent was diagnosed with Muscular Dystrophy by the team at Evelina London at age 4. He is cared for by a range of the hospital's services including cardiologists, endocrinologists, physiotherapists, and the neuromuscular service and attends around 8 times a year.

Jen Gordon, Finley's grandmother, said: "When you first hear that your child has a condition you've never heard of before it’s daunting. You just don’t know anything and you need to know everything. Very quickly, within that first year, all of the different departments that Finley was under gave me every bit of information and didn’t mind me asking twice, three times, until I got it.

“They really have gone above and beyond to make sure Finley knows that he has a ton of options and opportunities and he can still live a really full and varied life.

“Physically Finley is quite well, despite his condition, but it’s emotionally that I feel the hospital has really helped over the years. To make sure that the information he is given is age appropriate, and that Finley is not afraid about what is ahead.

“I don’t know if it’s an unwritten law that when you work with children you have a different way about you. But all the nurses, all the support staff, even the lady who brings the dinner on the ward. They all seem to have a different outlook towards the children. Like they are all special, each and every one of them.

“They make me feel comfortable, and make Finley feel he is special to that person at that time.”

Dr Vasantha Gowda, consultant paediatric neurologist and the neuromuscular service lead at Evelina London Children’s Hospital, said: “It is a real honour to receive the Muscular Dystrophy UK’s Centre of Excellence Award for a second time in recognition of the ongoing care and support our centre provides to patients in south London, Kent and wider areas. We are fortunate to be supported by many colleagues in other services at Evelina London in providing this care.

“We pride ourselves in supporting people living with neuromuscular disorders and it is always our aim to provide an excellent standard of care.”

Catherine Woodhead, Chief Executive of Muscular Dystrophy UK, said: “We would like to congratulate Evelina London Children's Hospital that has been recognised with a Centre of Excellence award after a robust and rigorous assessment of their service by leading neuromuscular experts and members of the muscle wasting and weakening community.

“Despite continuing pressures and challenges within the NHS, these centres strive every day to ensure they promote best practice and provide an exemplary service.”