Patient care & support

Duchenne UK grants £20,000 to develop an adult Neuromuscular Complex Care Centre in the North East

February 2019

Duchenne UK and Joining Jack will jointly commit £20,000 to help develop a Neuromuscular Complex Care Centre in the North East (NMCCC NE).

Adults with DMD have complex care needs and often face difficulties having to attend many different appointments with different specialists. The National Hospital for Neurology and Neurosurgery, Queen Square, London, developed a new service model to improve the quality of care for patients by better coordinating their care. They opened the UK’s first Neuromuscular Complex Care Centre in September 2014. Duchenne UK would like to see this model rolled out across the UK. 

Patients will be admitted for a short stay at the unit during which they will be able to coordinate appointments with a range of specialists depending on their specific care requirements. This could include neurologists, respiratory and critical care consultants, cardiologist, gastroenterologist, clinical psychologist, physiotherapist, speech and language therapist, dietician and specialist nurses.

Increasing evidence, including NICE guidance, suggests that with co-ordinated, high quality, multisystem, multidisciplinary care, life-expectancy is significantly increased.

The centres will also support the collection of Natural History data that could benefit the DMD community.  

Our initial funding will allow a project manager to work on the business case which will include a detailed financial and risk analysis and feasibility study for the NMCCC NE. 

Dr Jon Rey-Hastie, CEO of DMD Pathfinders, said:

“This investment in developing a business case for a North East Neuromuscular Complex Care Centre paves the way for the rollout of a model of care for adults with DMD that ensures excellent quality, best practice care as well as access to innovative, potentially life-changing treatments in the future. By coordinating complex care, providing access to vital equipment and preventing health crises through early intervention, adults with DMD are more able to live healthy, fulfilling lives in the way they choose.”

Dr Chiara Marini-Bettolo, Consultant Neurologist, John Walton Muscular Dystrophy Research Centre, Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust, said:

“We are grateful to Duchenne UK for providing funding to support the development of a business plan to establish a Neuromuscular Complex Care Centre in the North East of England (NMCCC-NE).

Once open the NMCCC-NE will result in improved and enhanced coordinated care, reduce hospital appointments and unplanned admissions and facilitate transition from paediatric to adult services for neuromuscular patients, including Duchenne Muscular Dystrophy.

It will also work to deliver and advance clinical research and support access to novel treatment under the various early access or compassionate schemes”.

The NMCCC NE aims to:

  • Improve qualitative care, provide better coordinated care and standards of care for patients with NMD.
  • Reduce hospital appointments for patients with NMD.
  • Reduce unplanned emergency admissions, especially intensive care admissions, for people with NMD.
  • Facilitate transition from paediatric to adult services.
  • Provide access to new services for adult patients with NMD.
  • Deliver clinical research, in particular Natural history studies for adult patients with NMD.
  • Advance clinical research in adult patients with NMD.
  • Support access to novel treatments under the various early access or compassionate schemes.





What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK?

Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy. The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.  

How to donate?

Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

  • Direct Debit – Duchenne Direct
  • Individual Donation – Donate
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
  • Take part in one of our fundraising events – Events
  • Text DUCH10 £10 to 70070


For more information and interview requests:

Visit www.duchenneuk.org 

Molly Hunt – Communications Manager, Duchenne UK 

E: [email protected]


Published on 14 February 2019

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