In the UK there are different places where you can receive specialist neuromuscular healthcare. This page introduces you to these different places and how you are able to access them.
Specialised muscle centres around the UK provide clinics for thousands of people with muscle disease each year. The multi-disciplinary teams ensure that patients have access to the best diagnostic and medical care available, including support from our local care advisors.
Scientists also research and train at muscle centres and work to transfer their findings into potential new treatments and improved services for people with muscle disease. This includes translating basic science findings from the research laboratory into clinical trials.
How do I access a muscle centre?
Your GP can make a referral to your local muscle centre by writing to the relevant consultant at the centre on your behalf. You can find your local muscle centre via our map of services.
What can I expect from the centre?
Most centres offer a comprehensive diagnostic, assessment and management service for their patients with muscle disease.
How can I find out more about my nearest centre?
You can find out more about your nearest centre and the specialist team available via our neuromuscular support hub.
In 2015, three neuromuscular centres were awarded Centre of Excellence status by Muscular Dystrophy UK. They join the seven Centres of Excellence previously awarded this status in 2012. This award acknowledges all of the centres’ who not only provide outstanding levels of specialist associated neuromuscular services but also promote best practice locally and nationally.
Together with TREAT-NMD, Muscular Dystrophy UK’s Services Development Committee, chaired by Baroness Thomas of Winchester, who has limb girdle muscular dystrophy, investigated muscle centres and clinics across the UK in order to assess which ones would be awarded Centre of Excellence Status. The audit involved a rigorous assessment of neuromuscular services by a panel of experts led by Professor Martin Bobrow, an eminent geneticist, former Chairman of Muscular Dystrophy UK (1995-2010) and Honorary Life President.
This is not a full list of every good neuromuscular centre in the UK. Some centres chose not to submit to our audit and there are many others that provide very good quality care to their patients but narrowly missed out on a few of the Centre of Excellence criteria. In addition there are established regional and national neuromuscular networks providing a high standard of care and support to the people living in their areas.
Centre of Excellence status has been awarded to the following ten centres:
- Wessex Neurological Centre, Southampton General Hospital, Southampton (Adult Centre for Clinical Excellence)
- The Addenbrooke’s Neuromuscular Service, Cambridge (Adult and Paediatric Centre for Clinical Excellence)
- Robert Jones and Agnes Hunt Orthopaedic NHS Trust, Oswestry (Adult and Paediatric Centre for Clinical Excellence)
- Dubowitz Neuromuscular Centre, Great Ormond Street Hospital, London (Paediatric Centre for Research and Clinical Excellence)
- The National Hospital for Neurology and Neurosurgery, London (Adult Centre for Research and Clinical Excellence)
- The John Walton Muscular Dystrophy Research Centre, Newcastle (Adult and Paediatric Centre for Research and Clinical Excellence)
- Oxford University Hospitals, Oxford (Adult and Paediatric Centre for Research and Clinical Excellence)
- The Walton Centre, Liverpool (Adult Centre for Clinical Excellence)
- Leeds Children’s Hospital NHS Trust (Paediatric Centre for Clinical Excellence)
- Alder Hey Children’s Hospital NHS Foundation Trust, Liverpool (Paediatric Centre for Clinical Excellence)
Our next audit for Centres of Excellence is due to take place in 2018 when we hope to see more neuromuscular centres recognised as specialist centres and networks of neuromuscular clinical excellence.
In the United Kingdom there are four nationally funded highly specialised centres for rare neuromuscular diseases. These centres can see patients from anywhere in the UK and are able to provide a specialised diagnostic service to people with suspected cases of:
- Congenital myasthenia
- Congenital muscular dystrophies and myopathies
- Limb-girdle muscular dystrophy
- Muscle channelopathies
People from across the country with a suspected diagnosis of any of the above mentioned diseases may be referred by their GP or local neuromuscular service; when appropriate muscle biopsy or DNA will be sent for analysis at the relevant centre.
Newcastle Muscle Centre
The Newcastle Muscle Centre leads the HSS for rare neuromuscular disorders, and is specifically responsible for the limb-girdle muscular dystrophy diagnostic and advisory service. The centre also accepts referrals for MFM and distal myopathies as some of these disorders are allelic or clinically overlapping with LGMDs.
The Oxford Congenital Myasthenia Service
The Oxford Congenital Myasthenia Service is a national referral centre for children and adults in whom a Congenital Myasthenic Syndrome (CMS) is suspected.
Dubowitz Neuromuscular Centre (DNC)
The Dubowitz Neuromuscular Centre is a national referral centre for the diagnosis and assessment of congenital muscular dystrophies and congenital myopathies.
Queen Square Centre for Neuromuscular Diseases
Queen Square Centre for Neuromuscular Diseases offers a national specialised diagnostic service for muscle channelopathies. This incorporates a combination of specialist neurophysiology testing (including short and long exercise testing), clinical assessment and extensive genetic testing.
There are two NeuroMuscular Centres in the UK, both offering physical therapies to people with muscular dystrophy and other neuromuscular conditions.
The NeuroMuscular Centre Cheshire
Since its formation in 1990, the NeuroMuscular Centre (NMC) in Cheshire has grown from a Centre offering physiotherapy, to one that also offers employment, training, support and respite for carers. Everything the NMC Cheshire does has the sole aim of improving the quality of life for adults and young people with muscular dystrophy and related neuromuscular conditions.
The Muscular Dystrophy Campaign stepped in to support the NMC Cheshire in the mid-1990s when it was at risk of closure, and in April 2012, the NMC Cheshire announced that they were in a position to become fully independent.
The NMC Cheshire is a place of not only innovative treatments and therapies, but also of informal chat and support among clients. People come to the NMC from all over the UK – and abroad – for physiotherapy, referred either by their GP or consultant. With the additional use of a hydrotherapy pool at the neighbouring school four times a week, the Centre offers people with muscular dystrophy and related neuromuscular conditions a range of relevant and regular treatments.
The NMC Cheshire actively offers support to families dealing with transition into adulthood and the shift from children’s services into work, further education and career options; health and adult services and practical support in terms of housing adaptations, physiotherapy and exercise, as well as bereavement support.
The MD Support Centre
The MD Support Centre – which is independent of Muscular Dystrophy UK – was formed in 2012 to provide regular, condition-specific physiotherapy on a long-term basis, to anyone with muscular dystrophy or a related neuromuscular condition.
The MD Support Centre also offers a range of other physical therapies, including osteopathy, acupuncture, nutrition advice and soft tissue massage, and treats 11,500 people with neuromuscular conditions in the Midlands.
Muscular Dystrophy UK works closely with the MD Support Centre to run an advocacy and advice service, through which service users can access face-to-face support on issues such as care packages, benefits, housing adaptations, adapted motor vehicles and wheelchairs.
To see how we are working to improve services visit our Bridging the Gap page.
For more information about muscular dystrophy and other related conditions please contact us on our freephone support number 0800 652 6352 (freephone) or via email firstname.lastname@example.org.