The paediatric Neuromuscular Service provides assessment, advice, support, therapy and medical treatment to children and families affected by muscle and nerve conditions. This service is available to children and young people living in Sheffield, South Yorkshire, North Derbyshire, Lincolnshire and for youngsters with some specific neuromuscular conditions living in the Midlands. We are one of four centres commissioned nationally to provide Spinal Muscular Atrophy (SMA) gene therapy in England.
We have close liaison with our respiratory team including ventilatory support (prophylactic chest support), spinal surgical team (including prophylactic spinal support), cardiology, orthopaedics, endocrine and specialist metabolic bone teams.
We have on-site specialist diagnostics services for neuromuscular conditions such as neuroradiology (including muscle imaging), neurophysiology, genetics, biochemical analysis, histopathology and a gait laboratory.
There is access to specialised neurology psychologists, occupational therapists, physiotherapists, speech and language therapists, clinical genetics, orthotics, and palliative care.
We work closely with our health colleagues in the adult Neuromuscular Service at the Royal Hallamshire Hospital which is part of Sheffield Teaching Hospitals NHS Foundation Trust. We conduct regular transition clinics with the adult team and we hold regular joint team meetings and up-skilling/training days.
How to Access the Service
Referrals are made to one of the named consultant paediatric neurologists specialising in neuromuscular conditions via the child’s local paediatrician. Once a child is under our medical care, they remain with us until transition into adult health services.
Clinics
A number of multidsciplinary neuromuscular clinics are held every week in Sheffield, in addition to:
- Combined respiratory, spinal and neuromuscular clinics which are held four times a year, where our youngsters with multiple needs are reviewed by all three specialities in one clinic appointment
- We have established a consultant led ‘one stop shop’ clinic held four times a year with respiratory, endocrine, neuromuscular, and cardiology services for our neuromuscular patients who have a clinical requirement for these specialities
- Transition clinics are held four times a year, introducing our youngsters to health colleagues in the Sheffield adult Neuromuscular Service who will be taking on their adult health care
- The HSP (Hereditary Spastic Paraparesis) Clinic is held every two months and is the only national operational paediatric HSP clinic to date
- Therapy clinics attended by our advanced nurse practitioner, physiotherapist and occupational therapist/care advisor regularly review our youngsters who may not require a clinic appointment with their consultant neurologist
SMA gene therapy clinics are held weekly for children who have undergone gene therapy infusion at Sheffield Children’s Hospital. These clinics are attended by the NM MDT (Neuromuscular Multi Disciplinary Team) of clinicians, physiotherapists, care advisor, speech and language therapist.
The team
Dr Min Ong
Consultant Paediatric Neurologist
Dr Min Ong is the lead consultant for neuromuscular conditions in Sheffield Children’s NHS Foundation Trust. She cares for patients with neurological problems both in the acute setting and those with longer-term neurological problems. A substantial proportion of her patients have a neuromuscular condition. She has developed an expertise in SMA.
Dr Mark Atherton
Consultant Paediatric Neurologist
Dr Mark Atherton is a consultant paediatric neurologist at Sheffield Children’s Hospital with a special interest in paediatric neuromuscular disorders. Recent research areas for our team have included projects exploring the use of technology within the management of patients with neuromuscular disorders and exploring how psychosocial factors of living with a neuromuscular disorder impacts upon patients
Nicholas Mills
Advanced Nurse Practitioner
Nick has moved to the neuromuscular team from his job as advanced nurse practitioner for Critical Care, bringing with him skills and clinical reasoning from both a nursing and medical perspective. He may lead clinics, provide parents and patients with education (for example on non-invasive ventilation, suction, gastrostomy feeding, constipation and medications) prescribe medicines, undertake clinical procedures such as Intrathecal, intravenous or intramuscular injections. His particular interests are in gene therapy and in working with the multi-disciplinary team to provide holistic care.
Sarah D'Urso
Neuromuscular Physiotherapist
Sarah who is clinical lead of Neuromuscular Therapy, provides specialist physiotherapy assessments and advice to parents, carers and professionals to support children and young people with a neuromuscular condition. Sarah is a member of the Association of Paediatric Chartered Physiotherapists (APCP) Neuromuscular Committee. She is actively working in research projects in the neuromuscular field. Sarah has worked as a paediatric physiotherapist in both the community and hospital settings in South Yorkshire, before joining the Sheffield neuromuscular team.
Kay White
Neuromuscular Physiotherapist
Kay has worked in the field of neurological physiotherapy for over thirty years initially with adults and for the past fifteen years with the community Paediatric Physiotherapy Service in Sheffield and as a Specialist Paediatric Neuromuscular Physiotherapist. Based in Sheffield but working across the wider area Kay provides specialist assessments and advice to patients and carers as well as providing support and specialist advice to physiotherapists working with children with neuromuscular conditions.
Neil Hinde
Neuromuscular Physiotherapist
Neil provides specialist physiotherapy assessments and advice to parents, carers, and professionals as part of the neuromuscular team. Neil has worked with young adults with complex disabilities in the community, delivered assessments, training and lecturing for individuals with neurological and physical disabilities for an Orthotics company. More recently he has worked in community paediatric physiotherapy in Rochdale and Sheffield Children’s NHS Foundation Trust.
Sian Ball
Neuromuscular Care Advisor
Sian provides neuromuscular advice and support to children, young people and their families. She is a qualified occupational therapist, and has worked in adult and paediatric health care, voluntary organisations and social care. She joined Sheffield Children’s NHS Foundation Trust in 1991 and has more recently worked as an integral member of the neuro-disability Early Years Therapy team at Ryegate Children’s Centre, Sheffield.
Hannah Gent
Occupational Therapist and Neuromuscular Care Advisor
Hannah has worked as a paediatric occupational therapist since 2011, predominantly in acute hospital sites, alongside community colleagues. Hannah provides support and specialist assessment of children with neuromuscular conditions in clinic and outpatient settings at Sheffield Children’s NHS Foundation Trust. Hannah will liaise with local occupational therapy services to ensure clients have the input and care they require.
Muneebah Ali
Neuromuscular Clinics Coordinator
Muneebah works with all members of the neuromuscular clinical team providing a comprehensive administrative service to support the multidisciplinary team. She manages the organisation of the specialist neuromuscular clinics.
Becky Jow
Secretarial Support
An integral member of the neuromuscular therapy team, Becky manages the secretarial and administrative support for the therapists and neuromuscular care advisors.
Dr Sanela Grbic
Senior Clinical Psychologist
Sanela has worked as a clinical psychologist at Ryegate Children Centre, Sheffield since qualifying in 2013. She has extensive experience of working with children with neurodevelopmental difficulties and various neurological presentations. She is able to assess cognition and learning using standardised tools and also support the family psychologically or sign post to the appropriate service for the patient and family's needs.
Sanela has a particular interest in working with children with neuromuscular conditions and has some dedicated time with this patient group.
Nicky Sedgewick
Speech and Language Therapist
Nicky works with the Neuromuscular Team with children receiving Zolgensma gene therapy. She also has an interest in children who have other neuromuscular conditions.
Clinical Nurse Specialist
We will soon have a clinical nurse specialist who will add a nursing perspective to the team, providing education to school staff around emergency and generic medication usage for their pupils and nursing care support to parents around all aspects of their child’s neuromuscular condition both in the community and in hospital.