Published: new optimal clinical pathway for neuromuscular conditions
11/09/2024
A new optimal clinical pathway of care for neuromuscular conditions has been published. The pathway sets out what good treatment, care and support looks like for people affected by a range of neuromuscular conditions. The pathway was developed in collaboration with healthcare professionals and patient groups supporting people with neuromuscular conditions.
Setting out good care, supporting commissioning
Neuromuscular conditions encompass over 60 different conditions. They include a number of rare diseases and many conditions that are genetically driven. Collectively neuromuscular condition prevalence is estimated at 1 per 1000 of the population, and most present in adulthood, although 15% present during childhood or the neonatal period of life.
The pathway outlines the “optimal pathway” for patients living with neuromuscular conditions from diagnosis, ongoing management and end-of-life care, and identifies potential efficiency savings too.
This new optimal clinical pathway is part of a suite of optimal clinical pathways. They set out what good care looks like and support the commissioning of quality services for people with neurological conditions, locally and nationally.
“Every opportunity to improve multi-disciplinary care”
Dr Andria Merrison, Clinical Lead for the pathway, said:
“It is great news that the neuromuscular clinical pathway has now been published, which will support the new service specification for neurology that will underpin future commissioning of services by NHS England. It has been formed by national collaboration with people living with neuromuscular conditions and their representing organisations, clinicians and commissioners. It has been a real pleasure to work with a wide range of brilliant and committed people. My particular thanks go to Muscular Dystrophy UK (Nic Bungay, Bobby Ancil and Robert Burley) and The Neurological Alliance (Georgina Carr), who were instrumental in designing this pathway and bringing it to publication. In so doing there is every opportunity to improve multi-disciplinary services for people living with neuromuscular conditions throughout the country.”
Rob Burley, Director of Care, Campaigns and Support at Muscular Dystrophy UK, the leading charity supporting more than 110,000 people living with one of over 60 muscle wasting and weakening conditions, said:
“We fully support the launch of the new clinical pathway for neuromuscular conditions, where we had the opportunity to share input from the muscle wasting and weakening community. For someone living with a neuromuscular condition, the right care is essential at every point of their unique journey from diagnosis through to ongoing management. We would urge commissioners and providers to use the pathway to help address gaps in provision to ultimately improve care, support, and ensure that everyone has access to the right treatment and condition management.”
What next
Optimal clinical pathways are being published at a critical time, as Integrated Care Boards (ICBs) are preparing for their new responsibilities as commissioners of many neuroscience services. This optimal clinical care pathway provides consensus on what good care looks like for people affected by neuromuscular conditions, and real-life examples of good care that can be replicated.
We ask all clinical directors, service managers local commissioners to use the pathways to improve services and our member organisations and others in the voluntary sector to use this pathway to advocate for optimal care to be implemented and hold services to account when it is not being provided. People affected by neurological conditions are encouraged to review the pathway, consider whether they feel they could access services which are important to them, and raise concerns with their local Integrated Care Board. You can find out more about Integrated Care Boards (ICBs) and Integrated Care Systems on our website.
We are urging NHS England, commissioners and providers to use these pathways, and we will be promoting them throughout the year. In particular, we urge NHS England to ensure the principles of this pathway, together with other pathways developed for neurological conditions, are enshrined in commissioning for neurological care.
