National award for regional Muscular Dystrophy network

Release Date: 23/05/2017

National award for regional Muscular Dystrophy network

A group of NHS North West experts – including a specialist team at The Robert Jones and Agnes Hunt Orthopaedic Hospital – have been awarded ‘Network of Excellence’ status for their care of people with neuromuscular conditions.

Muscular Dystrophy UK, the charity for 70,000 people living with muscle-wasting conditions, awarded the status to the North West Adult and Paediatric Neuromuscular Network, which works with many of the estimated 8,000 people living with neuromuscular conditions in the North West of England.

Many muscle-wasting conditions are rare and complex, meaning that professional education is vital for making sure that people receive the right treatment. The network, formed in 2006, was praised by the charity for its events training professionals in the conditions. It has grown rapidly since 2015 with new support staff, involvement from NHS England and more professions joining the network, contributing to its new award status.

The network brings together staff from seven organisations, including the Muscle Team at RJAH, and is one of only three networks to receive the accolade from the charity.

Dr Tracey Willis, Consultant Paediatric Neurologist with a Speciality Interest in Neuromuscular Disorders, said: “The muscle team in RJAH is fortunate to be part of both the West Midlands Neuromuscular Network and the North West Neuromuscular Network, as geographically our patients span both regions.

“As part of these networks it enables us a group of professionals to drive forward services that our patients need, address areas of need, represent a body that supports each other in best practice and aims to deliver the highest care possible.

“As these are rare conditions, it is important that we all work together to enable gold standards are adhered to, funding achieved and patients benefit both from clinical as well as access to research.

“Receiving this excellence award gives encouragement that we are on the right track and that what we are doing is making a difference.”

The status was awarded following a rigorous UK-wide audit of neuromuscular services by a panel of experts.

The panel, chaired by geneticist Professor Martin Bobrow, were particularly impressed by the network’s focus on hosting events for patients and health professionals across the region. The meetings are welcomed by people living with neuromuscular conditions as a chance to ask questions outside of often stressful clinic appointments.

Robert Meadowcroft, Chief Executive of Muscular Dystrophy UK said: “The North West is well deserving of becoming a Network of Excellence.

“The 8,000 people in the North West living with muscle-wasting conditions have specialist needs, and the NHS staff working with them need to be fully up to speed on how best to support them.

“The network’s excellent knowledge-sharing approaches provide a model for other areas as they have put neuromuscular care on the health agenda in the North West.

“The right specialist care helps people to lead longer and less stressful 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, and look forward to seeing what improvements to care it cultivates next.”

Pictured: Robert Meadowcroft, Chief Executive of Muscular Dystrophy UK (front row, right), presents the award to members of the North West Network, including Tracey Willis (second row, right) from RJAH.



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