The North West Neuromuscular Forum was launched in October 2013 as the regional arm of the the Bridging the Gap project.
The new clincal network pools regional neuromuscular expertise by bringing together NHS commissioners, people with muscle wasting conditions and their families, clinicians and allied health professionals to ensure that specialist and community neuromuscular services are strengthened in the North West
The members meet regularly and the forum provides a platform for patients and clinicians to discuss and address gaps in local services and to share their own experiences of local neuromuscular health care; providing important thoughts on how the lives of people with muscle wasting conditions can be improved.
Muscular Dystrophy UK shares quarterly updates on developments in neuromuscular services in the North West which can be read below.
"As a mother and carer of a son who has Duchenne muscular dystrophy I wanted to become involved in liaising with professionals, helping to put across the important views of people who have muscular dystrophy, being able to advise on care and equipment that is necessary. On the whole I wanted to become heavily involved with the learning process educating both myself and others."
"I have seen first hand the different levels of service available to patients and how this affects them, and how difficult it can be to access these treatments. My aim is to get everybody in the UK to be able to access the same high level of care and services as everyone else. My two particular concerns are the lack of hydrotherapy provision, and wheelchair services and I have found it useful to discuss these issues in the commissioning forums."
- Fran Binici - Specialist Nurse, Manchester Children’s Hospital
- Alison Brown - Care Advisor, Liverpool
- Louise Sinnott - NHS England, Cheshire, Warrington & Wirral Area Team
- Tim Almond - Chorley and South Ribble CCG
- Dr Stefan Spinty - Alder Hey Children’s Hospital
- Martyn Blenkharn - Neuromuscular Champion
- Laura Shane - City of Manchester Physiotherapist
- Julie Rigby - Strategic Clinical Networks
- Linsie Delaney - Physiotherapist Pennine Care NHS Foundation Trust
- Janice Fiddler - Care Advisor, Pennine Care NHS Foundation Trust
- Amy Richards - City of Manchester Physiotherapist
- Rajesh Mahdu - Clinical Fellow, Alder Hey Children’s Hospital
- Pete Smith - Fylde and Wyre CCG
- Dr Mark Roberts - Salford Royal HNS Foundation Trust
- Dr Charlotte Dougan - The Walton Centre
- Dr Imelda Hughes - Royal Manchester Children's Hospital
- Dr Christian de Goede - Lancashire Teaching Hospitals
- Laurie Bibby - Lancashire Teaching Hospitals
- Anne Duffy - Neuromuscular Champion
- Jeanette Chamberlin - Service manager, Alder Hey Children’s Hospital
Neuromuscular Specialist Centres
There are 5 regional neuromuscular centres in the North West. Find out more about your local neuromuscular service using the links below.
The Walton Centre NHS Foundation Trust
Alder Hey Children’s Hospital Neuromuscular Service
Lancashire Teaching Hospitals Neuromusclar Service
Salford Royal NHS Foundation Trust
Royal Manchester Children’s Hospital NHS Foundation Trust
The North West Muscle Group meets in local groups three times a year and is fighting for service improvements across the region. Find out when a muscle group meeting is taking place near you using the link below.