Families have told us about delays to accessing critical appointments, the impact on their mental health of not seeing their family and carers whilst shielding, and the loss of mobility and muscle weakness due to being unable to exercise. We also heard from neuromuscular clinical teams on the impact of the pandemic on staffing, service gaps, access to appointments and treatments.
In July 2021, we published our UK-wide 'Shining the Light' report setting out key recommendations to improve neuromuscular care and ensure services are fit for the future across the country. MDUK is calling for both short and long-term recovery priorities from the UK government to improve the lives of people living with muscle-wasting conditions. These include:
- Access to a specialist multidisciplinary team with input from a core team of specialist consultants, physiotherapists, mental health professionals, neuromuscular care advisors across the UK.
- The establishment of NHS-managed regional neuromuscular clinical networks across the UK to help raise standards and benchmark services.
- The provision of neuromuscular outreach clinics and improved connection with community services.
- Access to a psychologist or mental health specialist with expertise in working with people with a neuromuscular condition.
- Faster access to new treatments and therapies, from NICE assessment to patient roll out.
MDUK will be pushing for these changes to ensure services recover from the pandemic in the short-term and help strengthen services in the long-term.
Wales
In November 2021, we published our Wales 'Shining a Light' report on the barriers to accessing best practice care for people with a muscle-wasting condition in Wales.
Within the report, MDUK is calling for:
- the allocation of sustainable and consistent specialised funding for neuromuscular services to accurately reflect the care needs of the neuromuscular population, including more dedicated neuromuscular consultants, physiotherapists, nurse specialists, psychologist, and care advisor posts.
- secure NHS funding to support the Wales Neuromuscular Network to appoint a network manager to help identify local service gaps and implement more timely solutions.
- access to specialist psychology and mental health services for people with a neuromuscular condition.
- timely and local access to new treatments and therapies for people across Wales.
- Increase the number of trained, neuromuscular staff who can work with community services and bridge the gap between specialist neuromuscular teams and their surrounding areas.
We will work closely with key stakeholders across the Wales Neuromuscular Network, Welsh Government, NHS Wales and the Health Boards to drive forward these recommendations.
Scotland
In January 2022, we published our Scotland 'Shine a Light' report on the future of care for people with a muscle-wasting condition in Scotland.
Within the report, MDUK is calling for:
- Increase the number of neuromuscular nurse specialist roles to ensure every neuromuscular teams has at least one of these vital roles.
- Increase investment in the national neuromuscular teams with more neuromuscular consultant, physiotherapy, nurse specialists, and psychology time.
- Appoint a full-time network manager with administration support for the Scotland Muscle Network.
- Reduce waiting lists and address the growing backlog of new and follow-up appointments, by implementing virtual outreach clinics in local areas.
- Strengthen the administrative support for data collection and improved clinic co-ordination.
- Consider introducing flexibility into the yearly growth of block contracts to accurately reflect the growing neuromuscular population and the resulting increase in complex care needs.
We will work closely with key Scottish healthcare stakeholders to drive forward these recommendations to ensure every person with a neuromuscular condition has access to the services they need.
Northern Ireland
In February 2022, we published our Northern Ireland 'Shine a Light' report on the future of care for people with a muscle-wasting condition in Northern Ireland.
Within the report, MDUK is calling for:
- Allocate sustainable and consistent funding for neuromuscular services to accurately reflect the care needs of the neuromuscular population, including more neuromuscular consultant, physiotherapist, nurse specialist, psychologist, speech therapy, occupational therapy, and care advisor posts.
- Increase the number of trained neuromuscular staff who can work with community services, and bridge the gap between specialist neuromuscular teams and their surrounding areas.
- Improve access to specialist psychology and mental health services for people with muscle-wasting conditions.
- Reduce waiting lists and address the growing backlog of new and follow-up appointments by implementing virtual outreach clinics in local areas.
- Establish a Northern Ireland NHS-managed regional neuromuscular clinical network and re-appoint neuromuscular leads to connect government and the network.
- Provide specific clinic space where people with muscle-wasting conditions can access an appointment when they need to.
We will work closely with the leading neuromuscular specialist clinicians, the Belfast Trust leads and the Department of Health to drive forward these recommendations and improve the services across the country.
If you would like to share your experience of the pandemic or discuss any barriers to neuromuscular services in your region, please do let us know by getting in touch by emailing campaigns@musculardystrophyuk.org.