The new care considerations are a set of clinical care recommendations, drafted by international experts from a wide range of specialist disciplines. The considerations offer health professionals guidelines for diagnosing Duchenne and managing its symptoms and are also useful for families and individuals living with the condition.
Since the publication of the original Duchenne muscular dystrophy (DMD) care considerations in 2010, multidisciplinary care of Duchenne has evolved. Life expectancies have increased and with that there has been a shift to more anticipatory diagnostic and therapeutic strategies with a renewed focus on patient quality of life.
The new care considerations aim to address the needs of older people with Duchenne and to provide guidance on advances in assessments and interventions, and to consider the implications of emerging genetic and molecular therapies for DMD.
The new version includes eleven topics, eight of which were addressed in the original care considerations (diagnostics, management of corticosteroids, cardiac care, pulmonary care, physical therapy/physical medicine and rehabilitation, gastrointestinal and nutritional needs, orthopedic and surgical considerations, and psychosocial care)
The three new topics feature in are:
- primary care and emergency management
- endocrine management (covering growth and development, hormone deficiencies and replacement therapy when indicated)
- transitions of care across the lifespan
Muscular Dystrophy UK is delighted to see our work on transition referenced in the new care considerations and the charity recommended as a patient advocacy group.
We are now working to see these expert recommendations are recognised and implemented by the NHS in the following ways:
New family friendly guide:
Muscular Dystrophy UK know that it is vital that families and individuals living with Duchenne have access to the information provided in the Care Considerations. We are now working with TREAT-NMD and other Duchenne charities in the UK to create a family friendly version. The family guide is under development and is expected to be released in spring 2018.
Muscular Dystrophy UK have led work with the Duchenne Care Considerations Working Group to ensure that the updated care considerations are recognised by the National Institure of Clinical Excellence (NICE). Therefore we are delighted to announce that the process used to produce the care considerations have been formally approved under the NHS Evidence Accreditation Scheme (provided by NICE). NHS Evidence Accreditation verifies the most robustly-produced guidance available to health and social care professionals, enabling them to drive quality outcomes that are amongst the best in the world. It uses rigorous assessment processes based on international standards for guideline development produced by the Appraisal of Guidelines Research & Evaluation collaboration (AGREE). With this endorsement from NICE Muscular Dystrophy UK will press to ensure the care considerations are implemented as quickly as possible.
Facebook question and answer session with expert clinicians
In February we will be holding an online Q&A session where you can ask clinicians (Dr Jarod Wong, Consultant Paediatric Endocrinologist, University of Glasgow, Dr Ros Quinlivan, Consultant in Neuromuscular Diseases, at the National Hospital and Suni Narayan, Head of Clinical Development at MDUK) what these updates to the care considerations mean to you and your family.
Centres of Excellence Audit
As part of Muscular Dystrophy UK’s Services Development Committee’s 2018 audit of neuromuscular centres we will check centres can deliver these care considerations. The Committee is chaired by Baroness Celia Thomas and the the triennial audit of centres is an excellent opportunity to reveal the standard of care procided in NHS neuromuscular services across the UK.
We will also be holding a survey of people living with Duchenne to see if the recommendations are being met.
Focus on emergency care, transition and psychosocial needs
Three areas of the updated care considerations to be included for the first time or in an enhanced form are topics Muscular Dystrophy UK has put at the top of our list of campaigns and activities this year.
- Mental Health Matters campaign
- Ambulance Action campaign – the guidance recommends that emergency teams should request a Duchnene alert card)
- Initiatives dedicated to young adults and transition – Trailblazers continue to lead the way for young people with Duchenne)
Nic Bungay, Director of Care, Campaigns and Information said:
The delivery of expert and best practice care for people with Duchenne muscular dystrophy is essential and these updated care considerations will go a long way to improving the support people receive. The original care considerations published in 2010 had a significant impact on the way care is delivered to children and young adults with Duchenne, and have helped ease the pathway to the emerging treatments we see today. Muscular Dystrophy UK will now put all our efforts into ensuring these recommendations are adhered to across the whole of the country.
Suni Narayan, Head of Clinical Development said:
The generation of these guidelines brought together a group of experts from across the whole range of different specialties to present a full picture of what is needed to look after someone with Duchenne muscular dystrophy. Although care is still not consistently as good as it should be across the whole of the UK, I hope that these updated care considerations can take healthcare for people with Duchenne to a whole new level.
If you would like to speak to someone about the new care considerations or anything else related to Duchenne muscular dystrophy please call us on 0800 652 6352 or email firstname.lastname@example.org