‘Network of Excellence’ award for our care of people with muscular dystrophy

Monday, 6 February 2017

Today we were awarded a ‘Network of Excellence’ status for our care of people with muscular dystrophy.

The South West Neuromuscular Network, of which we are the host Trust, was awarded the status by leading national charity, Muscular Dystrophy UK. The network works with many of the estimated 6,000 people living with neuromuscular conditions in the South West.

The network was formed in 2009, at a time when there was no specialist service for adults and only a fragmented service for children. Patients were forced to travel as far as Oxford for the right care and support.

Following initial investment from the NHS, the network has grown to cover two main centres in Bristol and Plymouth as well as outreach clinics in Gloucester, Taunton, Exeter and Truro.

The network pools the skills of over 20 neurologists, physiotherapists, psychologists and support staff to provide faster referrals, improved service and better coordination for patients.

Network of Excellence award

The network also support community teams who work in  more rural areas across the region to ensure  they have the knowledge and support to care for people with muscle-wasting conditions close to home.

Steve Ledbrook, from Somerset, has Becker muscular dystrophy and said: “Before the network was developed, I saw a neurologist who didn’t have specialist knowledge about muscular dystrophy. To see someone who knew about my condition, I would have to go to Oxford. Not only did that take a lot of time but it meant they didn’t know what other services they could refer me to in the area.

“The network has changed all of that; it gives me the ability to ask questions of people who know what they are talking about. The network helped me get my power chair, supported me with getting the right housing, and got me going to the gym so I can exercise more and stay well. Their work has been essential and this status is well deserved.”

The South West is one of only three networks to be awarded the status following a rigorous UK-wide audit of neuromuscular services by a panel of experts. The panel, Chaired by eminent geneticist Professor Martin Bobrow, were particularly impressed by the network’s patient engagement work.

Dr Andria Merrison, the network’s Clinical Director and Consultant Neurologist, said: “We are very proud of how the network was designed with patients to cross traditional boundaries of health and social care and organisational divides.

“While establishing and delivering services across a large geographical area has been challenging, the success of the network is a real testimony to the dedication, commitment and passion of all the professionals who make up the network and collaborate with it.”

Robert Meadowcroft, Chief Executive of Muscular Dystrophy UK said: “The South West is well deserving of becoming a Network of Excellence. The improvements in care since its founding in 2009 have made a huge difference to improving the care for many of the 6,000 families and individuals in the South West with neuromuscular conditions. It is a model for other regions struggling to deliver vital care in a timely manner.

“The right specialist care can lead to longer and healthier lives, which is fantastic for both patients and the NHS. The network has rapidly become invaluable in providing the services and information that people need. We warmly congratulate the excellent team for delivering such high standards and expertise.”