Sheffield Children's NHS Foundation Trust

05-Aug-2021

Our multidisciplinary Neuromuscular Clinic was set up more than 20 years ago to provide care for children with disorders of nerves and muscles, and related conditions.

The Neuromuscular Service provides care and support to children and their families with disorders of nerves, muscles and related conditions. The most prevalent conditions we see in our service are (in order of prevalence):

Dystrophinopathies (Duchenne and Becker Muscular Dystrophy)
Charcot-Marie-Tooth Neuropathy (Hereditary Sensory and Motor Neuropathy)
Myotonic dystrophies
Spinal Muscular Atrophy
Other neuropathies
Other Muscular Dystrophies (including Congenital)
Myasthenia

We cover the South Yorkshire, North Derbyshire, parts of Lincolnshire (North, North East and Boston) regions.

Neuromuscular Clinic

Our team comprises of two neuromuscular doctors (Dr Min Ong and Dr Anthony Hart), a Specialist Neuromuscular Physiotherapist (Mrs Kay White) and a Specialist Neuromuscular Care Adviser.

The Specialist Neuromuscular Care Adviser can offer advice and support at diagnosis and beyond and act as a link between clinic appointments. The types of advice and support vary according to individual needs but can involve:

Providing information about specific neuromuscular conditions
Genetics
Mobility
Equipment and adapted housing
Benefits
Contact with others
Education liaison

Advice can be given face to face, via telephone, email or letter during home visits or clinic appointments.

We have close liaison with the respiratory team (including ventilatory support), spinal surgical team, cardiology team, orthopaedics, endocrine and specialised bone team.

We have on-site specialised diagnostics services for neuromuscular conditions such as neuroradiology (including muscle imaging), neurophysiology, genetics, biochemical analysis, muscle biopsy and a gait laboratory.

There is access to specialised neurology psychologist, occupational therapist, speech and language therapists, clinical genetics, orthotics, and palliative care.

We currently run regular combined clinics with the respiratory and spinal surgeons and plan to start an M.O.T. clinic for children with neuromuscular difficulties along with complex needs who require multiple specialty input. This would provide comprehensive care and reduce visits to hospital in a ‘one-stop’ clinic at Sheffield Children’s Hospital. We also plan to setup specialist neuropathy clinics together with orthopaedics utilising our gait laboratory to personalise therapy.

Our paediatric service works very closely with our colleagues in adult neuromuscular based in Royal Hallamshire Hospital. We have joint meetings and regular transition clinics in-cooperating the ‘ready-steady-go’ model. This ensures seamless move to the adult service.

Experience of running trials

We participate actively in the North Star Audit (national collaboration) for children and young people with Duchenne Muscular Dystrophy and can offer new therapies available to these children (e.g. Ataluren). Sheffield was also a trial site for Idebenone use in Duchenne Muscular Dystrophy.

Sheffield Children’s Hospital is part of the Spinal Muscular Atrophy (SMA) Network and is participating in SMAREACH – a national research platform for children and young people with this condition. We have a robust intrathecal nusinersen therapy programme for type 1 SMA.

In the past we have conducted a research study on the role of hydrotherapy in boys with Duchenne Muscular Dystrophy and national collaborative work delineating a new variant of Brown Vialetto-Van Laere syndrome.