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DMD Care UK

Joining Jack and Duchenne UK launch DMD Care UK - a major new initiative giving everyone living with Duchenne in the UK access to the best care

 

Our mission is to end Duchenne, by funding and accelerating treatments

  • We are also committed to ensuring that people living with Duchenne have access to the best support and treatments that are available now
  • Together, Joining Jack and Duchenne UK will invest £130,000 in to this project

 

We are pleased to announce the launch of DMD Care UK – a nationwide initiative to ensure everyone living with Duchenne has access to the best care.

Alex Johnson, our co-founder and mum to Jack, came up with the idea for the DMD Care UK project. She was concerned about the numbers of families contacting her, anxious that their children were not receiving the care that has been recommended internationally. These are known as the published Standards of Care (SoC). They were published in the Lancet in 2018.

Family versions of these guidelines were released last year. However, rather than providing patients with reassurance, they caused further anxiety because families realised that there was often a gap between what care was meant to be provided, and the care they were actually receiving.

So, together with Dr Michela Guglieri and Cathy Turner from Newcastle University, we created DMD Care UK, a £130,000 programme to bring together the leading DMD experts in the UK with the Duchenne Community to review the SoC and agree and publish recommendations for every area of care that can and should be delivered within the NHS.

We are working with the NorthStar Network, funded by MDUK, to make sure the recommendations are accessible to all patients, no matter where they live in the UK or what hospital they are seen at.

Because Duchenne is a complex disease and covers many areas of medicine, we will break down the project into various working groups such as bone care, cardiac care and endocrine care, which covers puberty, adrenal suppression and steroids.

Once the recommendations have been agreed upon, alongside Duchenne UK, we will invest in creating leaflets and webinars to make sure the community fully understands the recommendations. 

Alex Johnson said:

This discrepancy causes worry and confusion for patients and their families. A prime example is the SOC recommended patients start ace inhibitor by the age of 10 to protect the heart yet in reality many doctors and cardiologists and unwilling to prescribed until a problem occurs. That’s why we’re creating DMD Care UK – to make sure every Duchenne patient, no matter where they live in the UK, has access to the best care. 

Michela Guglieri, Senior Clinical Lecturer, Honorary Consultant Neurologist at Newcastle University, said:

Coping with the diagnosis of DMD is already hard for families and they should be reassured that in the UK they will receive the highest standards of care, wherever they live.  The 2018 published care recommendations include guidance which we know are not followed everywhere in the country - it is important to reach a national agreement about the best medical thinking and ensure that this is delivered to each child, young adult and man with DMD.

Cathy Turner, Duchenne Care UK Project Manager, said:

This is such an important project. The Standards of Care that were published were mainly written with a view to the US health market. What we’ve done is to look at what the NHS is realistically able to deliver and make sure that this is available equally throughout the UK. We’ll look at all aspects of Duchenne care. Where we need more evidence, we will carry out research. Where we need to raise awareness, we will support education and training.

In the next few weeks, we’ll be sharing the first of these recommendations with Dr Jarod Wong from Glasgow, who will be publishing guidelines for endocrine, puberty and steroid dosing and adrenal crisis management.

 

The working groups are: 

  • Diagnosis
  • Cardiac, including female carrier screening
  • Respiratory
  • Bone
  • Endocrine/puberty
  • Steroid dosing and adrenal crisis management
  • Physiotherapy and rehabilitation
  • Orthopaedics and surgery
  • Emergency care
  • Nutrition and gastrointestinal management
  • Psychosocial care
  • Transition to adult care

For more information, please visit dmdcareuk.org 

If you need any help, please email support@duchenneuk.org

 

We would like to thank our charity partners and family funds for contributing to this project: Duchenne UK, Team Oscar, Defending William Against Duchenne, Hope for Gabriel, Help Harry, Ben vs Duchenne and Team Felix.