UK’s first complex neuromuscular disorders centre opens 

09/09/2014 00:00 
The UK’s first dedicated inpatient centre for people with complex neuromuscular disorders has been officially opened by leading healthcare advocate Sir Robert Francis at the National Hospital for Neurology and Neurosurgery (NHNN).

The Neuromuscular Complex Care Centre (NMCCC) has been set up to make access to health services easier and outcomes better for patients with neuromuscular and inherited metabolic disorders who need highly complex nursing and medical care.

Patients who will use the centre have profound muscle weakness and typically have multiple organ dysfunction including respiratory, cardiac and gastrointestinal systems. By bringing multi-disciplinary care under one roof in the first centre of its kind in the country, the NMCCC aims to improve outcomes by giving more patients a longer and better quality of life, and reduce unplanned admissions to hospital which increase stress on both patients and carers.

The most common condition seen at the centre is Duchenne muscular dystrophy which affects one in 3,600 boys. In Denmark, where care is already centralised, patients survive to their 40s compared to London where survival is only to late 20s.

Commissioners estimate that around £10m a year is spent in London managing emergency admissions to hospital for patients with complex neuromuscular disorders. Nearly half of these could be avoided if the right care packages were in place.

Sir Robert Francis QC visited the centre with UCLH Chairman Richard Murley and Chief Executive Sir Robert Naylor, as well as UCLH Charity Chairman Lord Latymer and Chief Executive Philip Brading.

There they saw how the NHNN - which has some of the world’s leading neurologists in neuromuscular diseases and a multi-discipline team including a respiratory physiotherapists and gastroenterologists - has built the dedicated centre from the ground up around patients’ needs.

Patient Ravi Mehta, 25, who has had Duchenne Muscular Dystrophy since he was a baby, said: “Before this I would have to go to appointments at lots of different hospitals around London, which is tiring and stressful for everyone. Here patients can stay overnight to have a sleep study done, but all other care can happen here too – I can see a cardiologist, a neurologist – it’s brilliant that someone’s finally done it.”

Sir Robert Francis QC said: “It is a real pleasure to be present at something that is so definitely going right and going to be a beacon for excellence. The development of this centre shows how world-beating care can be provided at less cost than fragmented care. The centre is inspired by the commitment of the people who work here.”

Richard Murley, UCLH Chairman, said: “On occasion we forget about the patient that is wrapped around the condition that they live with. The whole ethos of the NMCCC is to look at the whole patient and their needs. It is truly a very wonderful facility.”

QS Enterprises Imaging Company, a wholly-owned trading subsidiary of UCLH Charity, provided £2.4m to build and equip the centre. The unit has six beds with the latest respiratory and medical monitoring equipment. It will act as a link between patients’ homes and communities with a 24-hour hotline to support patients and give advice.

Philip Brading, Chief Executive of the UCLH Charity, said: “The charity stands ready to underwrite the second and any subsequent NMCCCs on the basis that we can persuade NHS England to repay us from any savings that are made as a result.”

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