A key focus of our work has been making sure that we level the playing field in neuromuscular care making sure that no matter where you live in the UK, you have access to the right care at the right time. We know that there is a postcode lottery with specialised services and we work up and down the country to increase capacity in the areas which are falling behind others.
Since the start since July 2013, our Outreach, Commissioning and Professional Development team (formerly Bridging the Gap) has helped secure 70 new roles with over £4 million of new NHS investment in neuromuscular multidisciplinary teams.
And with great thanks to the tireless campaigning of our supporters, these new roles help to deliver better support to the 70,000 people living with muscle-wasting conditions in the UK including those in Northern Ireland, Scotland and Wales.
One of the key ways we work to achieve these new roles is with our regional neuromuscular forums which have now evolved into NHS backed neuromuscular clinical networks. Made up of neuromuscular specialist health professionals, family representatives and NHS commissioners, the networks will help to drive forward neuromuscular service improvements in the future.
Our campaign centres around:
- working with families, individuals and specialist teams to identify where there are gaps in care in different regions
- working with commissioners, both in the NHS and in CCGs, to identify the appropriate way of funding such a role
- Working with supporters to provide commissioners with examples of why these roles in these areas are so important
- Writing business cases with neuromuscular specialists and commissioners to create a formalised proposal for the new role we are campaigning for
Bobby Ancil, Neuromuscular Outreach Manager said:
“We are pleased to see funding in place for new specialist neuromuscular roles to support people with muscle-wasting conditions in so many different areas of the UK. These new roles are an important part of the service improvements that the Outreach team is working to achieve and moving forward we will continue to strengthen service gaps faced by neuromuscular services.”
- Continue to work alongside commissioners and call for improved care advisor support in London and the South East, Bradford and Manchester.
- Continue to work alongside commissioners and call for improved neuromuscular physiotherapy support in Nottingham.
- To engage with CCGs and NHS England where appropriate to call for improved neuromuscular respiratory care in Nottingham
- To monitor the neuromuscular consultant provision in Birmingham and Oxford as senior members of the team approach retirement
- to review psychology support provision as part of our Mental Health Matters Campaign
If there are any neuromuscular service gaps in your region that you feel need strengthening please do let us know by getting in touch with Bobby Ancil by emailing firstname.lastname@example.org.