This Clinical Reference Group (CRG) covers specialised neurosurgery and services for children with neurological disease, including specialised epilepsy surgery. Specialised neuroscience services for children and young people include highly specialised services and neurology, neurophysiology, neuroradiology, neuropsychology and neuropsychiatry, neurodisability and neurorehabilitation services.
Children with neurological disease require a sustained and integrated network of care involving a variety of organisations, professionals and equipment, often over a prolonged period of time. Services operate within managed networks to provide care that revolves around the individual child’s needs.
Chair: Dr Charles Fairhurst, Consultant in Paediatric Neurodisability, Guys and St Thomas’ Foundation Trust.
Ian Kamaly-Asl, North
Anita Devlin, North
Jane Williams, Midlands & East
Elizabeth Wright, Midlands & East
Elizabeth Wraig, London
WK Chong, London
Richard Edwards, South
Shona Mackie, South
Bobby Ancil, Patient & Public Voice
Pamela Jindu, Patient & Public Voice
Keith Wyncoll, Patient & Public Voice
Konstantinos Tsormpatzidis, Lead Commissioner, firstname.lastname@example.org
A key part of the CRG’s work is the delivery of the ‘products’ of commissioning. These are the tools used by the 10 Hub Commissioning Teams to contract services on an annual basis.
Service specifications are important in clearly defining the standards of care expected from organisations funded by NHS England to provide specialised care. The specifications have been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe both core and developmental service standards. Core standards are those that all funded providers should be able to demonstrate, with developmental standards being those which may require further changes in practice over time to provide excellence in the field.
The following service specifications fall within the scope of this CRG:
- Open fetal surgery to treat fetuses with open spina bifida
- Multiple Sclerosis Management Service for Children
- Ataxia telangiectasia service for children
- Vein of Galen malformation service (All ages)
- Paediatric Neurosciences: Neurosurgery
- Paediatric Neurosciences: Neurology
- Paediatric Neurosciences: Neurodisability
- Paediatric Neurosciences: Neurorehabilitation
Publication of revised service specification for Children’s Epilepsy Surgery Service
NHS England has published a revised service specification for children’s epilepsy surgery services. The specification has been revised, following public consultation. A report, describing the feedback received during consultation, and how that was considered in the revision of the service specification, can also be found below.
As part of consultation, NHS England commissioned Public Health England to undertake an epidemiological assessment of the impact of changes to the service specification.
A commissioning policy is a document that defines access to a service for a particular group of patients. A NICE Technology Appraisal Guideline on the same topic will replace, or be incorporated into, a commissioning policy as appropriate. These are important documents that are developed to ensure consistency in access to treatments nationwide.
The following policies fall within the scope of this CRG:
- Selective dorsal rhizotomy
- Everolimus for refractory seizures associated with tuberous sclerosis complex (effective until 31 March 2019)
- Everolimus for refractory focal onset seizures associated with tuberous sclerosis complex (ages 2 years and above) (effective from 1 April 2019)
- Rituximab for second line treatment for anti-NMDAR autoimmune encephalitis (all ages)
- Sodium oxybate for symptom control of narcolpesy with cataplexy (children)
- Everolimus for subependymal giant cell astrocytoma (SEGA) associated with tuberous sclerosis complex
Policy statements are brief documents that define the current commissioning position to support service contracting.
The following policy statements fall within the scope of this CRG:
- Prenatal surgery for open spina bifida
- Cerliponase alfa for neuronal ceroid lipofuscinosis Type 2 in children
- Nusinersen for genetically confirmed spinal muscular atrophy Type 1 for eligible patients under the expanded access programme
- Selective Dorsal Rhizotomy for Spasticity in Children with Cerebral Palsy