Health professionals, commissioners and people affected by neuromuscular conditions from the Midlands have come together to improve care and support at regional meetings. Events have already taken place in Birmingham and Loughborough with other meetings taking place around the country over the coming weeks.
Recent key developments in each region are outlined below:
- It was identified that after a recent change in local respiratory policy, University Hospitals Coventry and Warwickshire NHS Trust is seeing far more patients than previously and is in need of a care advisor. The Coventry team and MDUK will now be working together to develop the appropriate business cases and make sure that patients in the area have the right support.
- Dudley CCG presented their new neuromuscular care pathway to the group who fed back suggestions for improvement. It is hoped that this pathway, when complete, can be shared with other CCGs across the country.
- NHS England agreed to support the network in approaching Birmingham Children’s Hospital expressing concern that the current physiotherapy provision may stop after September.
- New respiratory physiotherapy posts in Leicester have now been advertised and will be interviewed shortly.
- NHS England and Nottingham University Hospital Trust are continuing to work together to address neuromuscular physiotherapy provision in the area. Local care advisor, Kirstie Spencer, is now looking into the option of training and upskilling a local physiotherapist to sit in on clinics.
- The network has agreed to work together to produce a gap analysis of the region to assess what the group should be prioritising over the next few years.
The clinical networks, chaired by local neuromuscular health specialists and patient representatives, have evolved from the successful regional Neuromuscular Forums and are driving forward the provision of best practice care for people living with muscle-wasting conditions in each area.
The West Midlands Network is co-chaired by Bryan Gould, pictured who has OPMD, and Dr Tracey Willis, a consultant paediatric neurologist in Oswestry. The East Midlands Network is chaired by Steve Jones, who has an undiagnosed muscle-wasting condition, and Dr Gabby Chow, a consultant paediatric neurologist from Nottingham.
Bobby Ancil, Senior Neuromuscular Outreach Manager, said
Its great to see that our newly clinician and service user led networks are growing and improving to make sure that we are always focussing on the most important matters regionally. We know that families and individuals can experience very different types of care in different areas so its essential we keep reassessing what the local priorities should be. Everyone should be getting the best possible care on the NHS and these networks are an excellent way of us working towards that goal.
Muscular Dystrophy UK is continuing to work with NHS commissioners across the UK to ensure that every region is covered by a Managed Clinical Network. To assist in this process we have produced a Neuromuscular Network document which outlines the benefits of a network for everyone involved in the care of people with a muscle-wasting condition.Networks recommend and ensure that the highest quality clinical and non-clinical support is available to individuals with a neuromuscular condition across a region or country, as well as organising neuromuscular training days for community health professionals and information events for people living with muscle-wasting conditions and their families.
If you would like to learn more about our forums or Managed Clinical Neuromuscular Networks please get in touch with Hannah Chalmers at firstname.lastname@example.org or on 020 7803 4826.