In the Southwest, Bristol and Plymouth are two hubs of the South West Neuromuscular Operational Delivery Network (SWNODN) which provides care to over 6000 adults and children with various neuromuscular conditions. We are currently looking after people with 80 neuromuscular conditions within the network via multi-disciplinary outreach clinics. We collectively look after over a 100 boys and young men with DMD. The clinical service, which is well established and funded by NHS England, is currently highly regarded and seen as a gold standard for clinical networks within the neurology and neuromuscular community. In 2017 the SWNODN was formally recognised by Muscular Dystrophy charity MDUK Neuromuscular as a Centre of excellence for neuromuscular conditions.
This recognition was achievable by means of a number of quality improvement activities, including guidelines, SOPs, audits about bone health and parent reported outcome measures and feedback from parents/families questionnaire about our services. We have also established workshops and Muscle cafes as a forum to provide specific information about coping and psychological support and opportunity for social networking. We have now established a specific south west DMD database to facilitate research.
Facilities we currently have within the department include:
2 dedicated research beds including overnight stays
Suitable corridor for 6 min walk test,
3 physios [2 paediatric and one adult]
trained in outcome measures and experienced with DMD patients
Support from research teams[nurses/managers]
Muscle Biopsy facilites
Muscle MRI facilites
Cardiac ECG, ECHO, MRI
Research Imaging facility (CRIC) for low risk trial recruits not requiring general anaesthesia for MRI scans and with good respiratory function.
Both of the neuromuscular paediatric Physiotherapists on our team are on the neuromuscular committee of the Association of paediatric Chartered Physiotherapists [APCP] and have co-authored a guidance document on Physiotherapy in neuromuscular conditions produced for the APCP. Our adult neuromuscular physiotherapist contributed to the adult physiotherapy e-learning module
All of our neuromuscular physiotherapists are active members of the North star network physiotherapy group and our paediatric physiotherapists contribute data to the Northstar and SMArt net/SMA REACH networks
Psychology, Chapter in physiotherapy book on DMD.
The NM advisors organising a national course
Department of Paediatric Neurology
Education Centre 6th Floor
Bristol Children's Hospital
Upper Maudlin Street
Bristol BS2 8BJ
|Study Name||Trial Status at Bristol||Overall Trial Status|
|Phase 3 PolarisDMD Trial||Recruiting||Recruiting|
|Patient Registry Translarna (Ataluren)||Recruiting||Recruiting|
|Wave Life Sciences Exon 51||Recruiting||Recruiting|
|Summit- Ezutromid (PhaseOut DMD)||Trial complete/terminated||Trial terminated|
I am a Consultant in Paediatric Neurology here in Bristol. I have successfully maintained and developed a regional paediatric neuromuscular service. I have introduced many of the innovations of this regional service.
I have been a major contributor to the successful business case for a Managed Clinical Network for NM conditions in the Southwest,
I have commenced and collaborated in several new research projects. I have also ensured Bristol’s participation in several national initiatives and collaborations in the Neuromuscular field (North star, SMArt Net/SMA REACH, TREAT- NMD). This will ensure that neuromuscular patients in the Southwest will have access to cutting edge research and potential treatments in the future.
I have worked in my current post of neuromuscular research physiotherapist based at Bristol Royal Hospital for Children [BRHC] since November 2017. This was a new post funded by Action Duchenne to provide additional physiotherapy input to clinical trials for Duchenne Muscular Dystrophy [DMD] in order to facilitate the development of Bristol as a major UK centre for research in DMD. In this post I have so far contributed to establishing eligibility and conducting physiotherapy assessments for two studies investigating Utrophin modulation sponsored by Summit [Oxford] Limited and two others currently in set up.
I see most of our paediatric DMD population in the north of the south west, in regional neuromuscular clinics at BRHC providing physiotherapy assessment and advice and recommendations for management of DMD. Consequently I have the opportunity to get to know our DMD population very well
I work closely with the specialist neuromuscular paediatric Physiotherapist as well as the rest of the neuromuscular multi-disciplinary and wider teams in Bristol and the south west.
For the 5 years prior to this post I was a member of the South West Neuromuscular Operational Delivery Network working as the specialist neuromuscular paediatric physiotherapist at BRHC. In this role I provided specialist physiotherapy input for children with a variety of neuromuscular conditions, including DMD.
I am a Consultant Paediatric Neurologist in Bristol with special interest in Neuromuscular disorders. I have successfully developed local and regional paediatric neuromuscular service with outreach MDT clinics at Exeter and Torbay. As the Governance lead, I have developed may quality improvement activities including regional bone health audit, benchmarking outcomes, database, patient satisfaction questionnaire and information leaflets about steroid regimes etc.
I have commenced and collaborated in several research projects. In the Neuromuscular field, I collaborate with (North star, SMArt Net/SMA REACH, TREAT- NMD). This will ensure that neuromuscular patients in the Southwest will have access to cutting edge research and potential treatments in the future.