This Clinical Reference Group (CRG) covers all aspects of specialised and highly specialised services for children with Neurological disease and impairment, across all areas of Neurology, Neurosurgery, Childhood Disability and Rehabilitation. It also includes other aspects of specialist and highly specialist commissioning including neurophysiology, neuroradiology, neuropsychology and neuropsychiatry.
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, Evelina London Children’s Hospital, Guys and St Thomas’ Foundation Trust.
Dr Anne Breaks, Clinical member
Dr Anita Devlin, Clinical member
Mr John Goodden, Clinical member
Mr Ian Kamaly, Clinical member
Shona Mackie, Clinical member
Dr Jane Williams, Clinical member
Elizabeth Wright, Clinical member
Bernie Stocks, HSS member
Bobby Ancil, PPV member
Keith Wyncoll, PPV member
Anthony Prudhoe, Lead contact
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:
- Inherited White Matter Disorders Diagnostic and Management Service (IWMD) (All Ages)
- 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
- Refractory epilepsy specialist clinical advisory service
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 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 and adolescents aged 7 until 19 years)
- 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: