Neuromuscular service

Ryegate Children’s Centre front entrance, off the A57

The Neuromuscular service based at Ryegate Children’s Centre provides care and support to children and their families with disorders of nerves, muscles and related conditions. We provide a specialist service to children, young people and their families who live in the city of Sheffield, South Yorkshire, North Derbyshire, and North and East Lincolnshire.

Expert care

Our team consists of:

• 2 consultant paediatric neurologists
• 3 specialist neuromuscular physiotherapists for children
• 2 neuromuscular advisors for children
• 1 occupational therapist
• 1 advanced nurse practitioner
• Administrative support

We have close liaisons with the respiratory team, spinal surgical team, cardiology team, orthopaedics, endocrine and specialised bone teams at Sheffield Children’s Hospital. We have on-site specialist diagnostic 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 psychologists, occupational therapists, speech and language therapists, physiotherapists, clinical genetics, orthotics, and a palliative care service.

Our paediatric service works very closely with our colleagues in the adult neuromuscular service which is based at the Royal Hallamshire Hospital, Sheffield. Together with our adult service colleagues, we hold regular transition clinics for youngsters who are moving from child health services into adult care. We aim to offer a seamless move for our youngsters from paediatric care to the adult health service.

What does the neuromuscular service do?

Our consultant paediatric neurologists will see your child prior to diagnosis and when a neuromuscular condition is confirmed. Your child will attend periodic neuromuscular out patient clinic appointments. Your child’s neuromuscular consultant acts as a gatekeeper to all other medical specialities which your child might require access to. Thereafter your child will remain with their named neuromuscular consultant throughout their childhood years.

The specialist neuromuscular care adviser offers advice and support at diagnosis and beyond and acts as a link to your neurologist between clinic appointments. The types of advice and support varies according to individual needs. The care advisor can provide information and practical advice on a variety of subjects:

• Specific neuromuscular conditions
• Equipment and adapted housing to help with daily living
• Benefits and other financial support and grant applications
• Linking up with schools and education
• Support to your child, their siblings and your family

Advice can be given face to face, via telephone, email or letter, attending home visits or at your child’s out-patient neuromuscular clinic appointments.

The specialist neuromuscular physiotherapist works closely with our consultants, attending neuromuscular out patient clinics. We offer therapy clinic consultations to supplement the work we do in clinic. We provide:

• Specialist neuromuscular assessment to your child and therapy management support to therapy teams in the regions
• Support for parents and carers when a new diagnosis is made
• Support for families and children around their neuromuscular condition
• Visits to schools, advising teaching staff on your child’s neuromuscular presentation and how it affects them in the school environment
• We participate in neuromuscular research

Our advanced nurse practitioner (ANP) works closely with the consultants, often taking part of their role in running clinics, prescribing medicines, liaising with other medical specialities, taking bloods or performing theatre lists. The ANP also works with the rest of the team in supporting the whole family from diagnosis to continuing treatment.

New therapies

Where is the Ryegate Children’s Centre?

Ryegate Children’s Centre,
Tapton Crescent Road,
Sheffield,
S10 5DD.

You can get to us via public transport on the number 51 bus from the town centre, and get off at Vernon Terrace.

Parent and carer, visitor and Blue Badge parking is available on site.

Research

We actively participate in the North Star Audit (national collaboration) for children and young people with Duchenne muscular dystrophy (DMD) and we offer new therapies available to these children (for example, Ataluren). Sheffield is a trial site for Idebenone use in DMD.

Working together with Leeds Teaching Hospital Neuromuscular Team, we are participating in research around the use of virtual reality in gaming, to supplement physiotherapy programmes with youngsters presenting with DMD.

Sheffield Children’s Hospital is part of the SMA Network and we participate in SMAREACH – a national research platform for children and young people with this condition.

We were accepted in 2021 as a trial site for the Fibrogen Trial for DMD.

Research continues to be a focal point of interest in our service. We continue to explore research topics which are pertinent to our neuromuscular children and youngsters and we actively seek participation in research.