Friday 27th October 2017 Muscular Dystrophy UK brought together adults living with Duchenne muscular dystrophy, health professionals, partner charities and pharmaceutical representatives to discuss new best-practice care recommendations being created for health professionals supporting an adult with Duchenne in the UK.
The event featured presentations from experts in respiratory, neurological, transition, physiotherapy, speech and language, peer and care advisor support for adults with neuromuscular conditions.
Each subject area was discussed in depth and then fed back to the wider group. The findings and conclusions of the revealing and positive discussions will be vital in helping to shape the final care recommendations.
As part of this process we want to hear your views and experiences on care for adults living with Duchenne muscular dystrophy and to do this we have launched a formal consultation period.
As part of the consultation we have created a form that can be filled in online, saved and returned to Muscular Dystrophy UK by email. Let us know your views by filling in our consultation document.
By taking part in the consultation you will help us ensure that the new recommendations of care that will be put in practice accurately reflect the views and needs of adults living with Duchenne muscular dystrophy in every area of their care.
To conclude the day we ran a workshop focused on clinical trials and what needs to be done to ensure that treatments are brought through for adults living with Duchenne.
Muscular Dystrophy UK is working alongside specialist health professionals and adults with Duchenne muscular dystrophy as part of the Adult North Star Network to improve healthcare across the UK. To push forward this vital work, this year we announced a new £1.45 million investment into NorthStar, part of which is to employ a Research Coordinator who will work with health professionals across the UK to create a natural history database of adults with Duchenne. This will support future clinical trials and treatments for the patient group.
Bobby Ancil, Senior Neuromuscular Outreach Manager at Muscular Dystrophy UK said:
Muscular Dystrophy UK is pleased to launch this important consultation that will support the creation of the first ever recommendations of care for adults with Duchenne muscular dystrophy. We want all adults living with Duchenne to share their thoughts on the specialist care they receive and help create best practice care guidelines that will help improve standards of care across the UK.
We are also proud to be supporting the development of the first natural history database for adults with Duchenne. We hope that by bringing together best practice care and data, we will see clinical trials for adults with Duchenne in the future.
The consultation will run until January 5th 2018. Once you have filled in the consultation document please send back to Lloyd Tingley at firstname.lastname@example.org or get in touch on 020 7803 4804.