The information gathered through the awards process provides a benchmark of neuromuscular services across all centres that took part in the audit. This will help centres in their efforts to build business cases for additional NHS investment in core services.
What are the Centre of Excellence awards?
We routinely work with neuromuscular centres across the UK to audit neuromuscular services. The 2023 audit was overseen by our Service Development Committee, chaired by Professor Deirdre Kelly CBE, and an independent Sub-committee, chaired by retired consultant paediatrician Dr Helen Roper, of neuromuscular health professionals and people with lived experience of neuromuscular conditions.
The audit reviews information, a range of case studies and examples of best practice as well as assessing the way neuromuscular services are organised and how people using the services can access them.
Why carry out the Centre of Excellence awards?
As the charity representing over 110,000 children and adults in the UK living with a neuromuscular condition, we’re dedicated to improving care and support for people living with these conditions. The Centre of Excellence awards are one way in which we work towards achieving this aim.
The purpose of the Centre of Excellence awards is to:
- Recognise centres that provide best practice specialist neuromuscular clinical care, and
- provide a benchmark of neuromuscular services across all centres that take part in the audits, as well as details about neuromuscular services at individual centres. This will help individual neuromuscular centres make the case for NHS investment in their neuromuscular services.
How many times have we audited neuromuscular centres for the Centre of Excellence awards?
We have carried out a total of four audits of neuromuscular centres for the Centre of Excellence awards. The first audit was in 2012 and the programme then ran every three years until it was interrupted by the impact of COVID-19, with the 2023 audit being the latest.
How do I get involved?
If you’re an adult living with a muscle wasting condition or the parent/carer of a child or young person accessing neuromuscular services in the UK, we run a survey alongside each audit. This aims to get feedback and a fuller picture on neuromuscular centres from people who use the service. The survey results also help us with more up-to-date information about neuromuscular centres across the UK, the positives and the challenges, and the quality of service provided.
How many categories of awards are given?
There are several categories of awards:
- Centre of Clinical Excellence with Research
- Centre of Clinical Excellence
- Centre Pursuing Clinical Excellence with Research
- Centre Pursuing Clinical Excellence
For a centre to be awarded the ‘Centre of Clinical Excellence’ status, they must demonstrate through its evidence how they fully meet the majority of the audit criteria. These include evidence around their clinical practice in accordance with evidence and guidance, clinical management, organisational management, engagement with service users, engagement with other health services and professional networks, and support for clinical research.
The ‘Centre Pursuing Clinical Excellence’ status is formally given to centres that cannot fully meet all the criteria requirements but can demonstrate a high level of clinical achievement and ongoing commitment to develop their centre. This is a new category to recognise centres in the UK who deliver high standards of services.
The ‘Research’ status is awarded to centres who deliver high-quality clinical research, including by running clinical trials. Centres also need to demonstrate a high level of contribution to clinical research into neuromuscular conditions, including through competitive research grants and a strong participation in research projects, beyond the submission of routine data to clinical networks and registries.
Which centres currently hold a Centre of Excellence/Centre Pursuing Excellence status?
The following centres have successfully received the Centre of Excellence/Centre Pursuing Excellence status, after an assessment by our volunteer auditors between July – November 2023:
Muscular Dystrophy UK Centre of Clinical Excellence with Research
- Neuromuscular Team, Alder Hey Children's NHS Foundation Trust, Liverpool
- Atkinson Morley Neuromuscular Centre, St George's University Hospitals NHS Foundation Trust, London
- Birmingham Heartlands Hospital, University Hospitals Birmingham NHS Foundation Trust
- Bristol Royal Hospital for Children, University Hospitals Bristol and Weston NHS Foundation Trust
- Evelina London Children’s Hospital, Guy's and St Thomas' NHS Foundation Trust, London
- The Neuromuscular Service at Leeds Children’s Hospital, The Leeds Teaching Hospital NHS Trust
- North Bristol NHS Trust, Bristol
- Oxford Muscle Service, Oxford University Hospitals NHS Foundation Trust
- Royal Manchester Children's Hospital, Manchester University Hospitals NHS Foundation Trust
- Neuromuscular Team, Sheffield Children's NHS Foundation Trust, Sheffield
- Academic Neuromuscular Disorders Unit, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Foundation Trust
- The John Walton Muscular Dystrophy Research Centre, The Newcastle upon Tyne Hospitals NHS Foundation Trust
- Greater Manchester Muscle Disease Unit, Northern Care Alliance NHS Foundation Trust, Salford
- Neuromuscular at Oswestry (NEMO), The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, Oswestry
- The Dubowitz Neuromuscular Centre, UCL Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children NHS Foundation Trust, London
- The Queen Square Centre for Neuromuscular Diseases, the National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, London
Muscular Dystrophy UK Centre of Clinical Excellence
- Southampton Children's Hospital, University Hospital Southampton NHS Foundation Trust
- The Wessex Neurological Centre, University Hospital Southampton NHS Foundation Trust
Muscular Dystrophy UK Centre Pursuing Clinical Excellence with Research
- Royal Preston Paediatric Neuromuscular Service, Lancashire Teaching Hospitals NHS Foundation Trust, Preston
- The Neuromuscular Team, The Walton Centre NHS Foundation Trust, Liverpool
- Regional Neuromuscular Service – Northern Ireland, Belfast Health and Social Care Trust, Belfast
Muscular Dystrophy UK Centre Pursuing Clinical Excellence
- Nottingham Adult Neuromuscular Team, Nottingham University Hospitals NHS Trust
- Addenbrooke’s Paediatric Neuromuscular Service, Cambridge University Hospitals NHS Foundation Trust
- University Hospitals Plymouth NHS Trust, Plymouth
Why has my centre not been recognised?
The list of centres is not a full list of every good neuromuscular centre in the UK. Some centres chose not to take part in the audit and there are others that provide very good quality care to their patients but narrowly missed out on a few of the Centre of Excellence criteria. A full list of neuromuscular services across the UK can be found here.
Why have no centres in Scotland and Wales received an award?
We welcome applications from all centres across the UK. Centres in Scotland and Wales have not yet applied to receive an award. This may be due to several reasons, for example, submitting information for the audit requires dedicated time spent on the application and we know that not all neuromuscular centres are able to commit their time and staff capacity to this process.
For more information on our Centre of Excellence awards, contact our dedicated team at centres@musculardystrophyuk.org.