Adult Neuromuscular Complex Care Centre

Joining Jack is to invest £10,000 as part of £20,000 project to develop an adult 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 strong>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 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.(NMCCC NE).(NMCCC NE).(NMCCC NE).