Last month Muscular Dystrophy UK held our annual conference for care advisors and clinical nurse specialists in Bristol. The conference, which was attended by 41 care advisors and specialist nurses as well as Muscular Dystrophy UK's six regional advocacy support officers, is a chance to hear updates on best-practice care and share thoughts on care improvements that Muscular Dystrophy UK and health professionals can make by working in partnership.
The conference ensures health professionals are provided with the best possible support to improve healthcare and services for people with muscle-wasting conditions.
At the conference this year health professionals hear presentations from expert speakers on:
- genetic counselling
- supporting families emotionally
- emergency care planning
- transitioning patients
- assistive technology
- clinical trials
- physiotherapy research
As well as developing knowledge in these important areas to better support individuals and families living with muscle-wasting conditions, attendees also established key priorities to work in partnership with muscular Dystrophy UK to improve healthcare and support in the UK. The key issues to emerge from these workshops were:
- emerging treatments and capacity of centres to administer them
- providing adequate respiratory care, particularly non-invasive ventilation (NIV)
- local support in the community and participation
- access to welfare and benefits
- recruitment of specialist health professionals at centres
- covering large geographical areas with a disparity in services
Muscular Dystrophy UK will continue to work with health professionals to ensure these issues improve in the UK. Some of the work currently ongoing surrounding these topics includes:
- our FastTrack campaign has been set up to improve access to emerging treatments and the capacity in neuromuscular centres
- our Right to Breathe campaign is in place to improve access to respiratory care
- our in house advocacy team are available to support individuals and families affected by muscle-wasting conditions to access the correct financial support
To find out more information about how Muscular Dystrophy UK work in partnership with health professionals to improve care, or for support on any of these issues please get in touch with campaigns@musculardystrophyuk.org.