We launched the East Midlands neuromuscular forum in October 2013.
The forum brings together regional neuromuscular expertise in the form of NHS commissioners, clinicians and allied health professionals, along with people with muscle-wasting conditions, and their families. The focus of the forum is to make sure specialist and community neuromuscular services are strengthened in the East Midlands.
The forum meets regularly and offers a platform for patients and clinicians to discuss and address gaps in local services and share their own experiences of local neuromuscular health care. These discussions are important in looking at how the lives of people with muscle-wasting conditions can be improved.
Every quarter, Muscular Dystrophy UK shares updates on developments in neuromuscular services in the East Midlands. You can read them below.
"I became a neuromuscular champion as I want to help future generations who have neuromuscular conditions have a better quality of life than past generations have had. I also wanted to enrich my life by doing something worthy and making a big difference to policies and the treatment of people with neuromuscular conditions, which I believe a lot of progress has been made with."
"My brother has muscular dystrophy and I have found it really useful to meet other people who have similar conditions to his. It has been interesting to be able to learn about the variations across different types of muscular dystrophy with everyone being able to share experiences to help each other, which is important to show people that they are not alone."
- Jeremy Bennett - Strategy and Planning support officer Leicester City Clinical Commissioning Group
- Julie Cassell - Regional Care Adviser, East Midlands
- Dr Gabbie Chow - Consultant Paediatric Neurologist, Nottingham University Hospital
- Vivek Gohil - Patient representative
- Rachel Ibbotson - Senior Physiotherapist, Young Adult Team, Derbyshire Healthcare Foundation NHS Trust
- Owen Jones - Senior Service specialist, Leicester and Lincolnshire Area Team
- Yvonne Julien - Occupational Therapist, Leicester
- Margot Keates - Patient representative
- John Langley - Carer representative
- Nicola McNarry - Clinical Specialist Physiotherapist, Nottingham Children’s Hospital
- Margaret Philips - Clinical Associate Professor in Rehabilitation Medicine, Derby Hospital
- Helen Robbins - Paediatric physiotherapist, Leicester
- Sabhia Sheikh - Quality Improvement Lead, Mental Health, Neurological Conditions and Dementia, East Midlands Strategic Clinical Networks
- Carolyn Young - Regional Programme of Care Manager for Trauma, Midlands & East
- Dr Subbu Ganesan - Paediatric consultant, University of Leicester Hospital Trust
- Steve Jones - Patient representative
- Stuart Sullivan - Executive Director, NMC Midlands
Neuromuscular specialist centres
There are three regional neuromuscular centres in the East Midlands. Find out more about your local neuromuscular service using the links below.
The East Midlands Muscle Group meets in local areas three times a year and is fighting for service improvements across the region. Use the link below to find out when a Muscle Group meeting is taking place near you.