This Lead and Inform 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, neurodisability and neurorehabilitation. It also includes inherited white matter diagnostics and treatment, open fetal surgery for fetuses with open spina bifada and other highly specialised clinical areas such as vein of galen malformation services and ataxia telangiectasia services.
The CRG scope also covers specialist and highly specialist commissioning including neurophysiology, neuroradiology, neuropsychology and neuropsychiatry. Children’s epilepsy surgery services and the clinical advisory service established to support clinicians working with patients to optimise the treatment of refractory epilepsy are also included. In addition to the service specifications in place to support paediatric neurosciences, the CRG scope also covers NHS policy that describes the criteria for access to selective dorsal rhizotomy treatment for children with spasticity in cerebral palsy.
- Clinical lead: Charlie Fairhurst, National Speciality Advisor
- Anthony Prudhoe, Lead Commissioner
- Bernie Stocks, Lead Commissioner (Highly Specialised)
- Katherine Martin, CRG Clinical Member
- Sophia Varadka, CRG Clinical Member
- Anita Devlin, CRG Clinical Member
- Jenni Palmer, CRG Clinical Member
- Ann Breaks, CRG Clinical Member
- Kristin Aquilina, CRG Clinical Member
- John Gooden, CRG Clinical Member
- Ian Kamaly, CRG Clinical Member
- Rebecca Bromley, CRG Clinical Member
- Jennifer Smith, CRG Clinical Member
- Nevila Kallfa, Public Health Lead
- Heather Weaver/Tracey Williams, Pharmacy Leads
- Patient and public voice representative, to be confirmed
Non-core members of the group may be drawn upon for specialist advice and expertise required to deliver the key objectives of the CRG work programme.
A key part of the CRG’s work is the delivery of the products of commissioning. These are the tools used by 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 service standards.
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
- Children’s Epilepsy Surgery Service
- Response to Children’s Epilepsy Surgery Service consultation
A commissioning policy is a document that defines access to a service for a particular group of patients. A National Institute for Health and Care Excellence 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 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
If you are interested in the work of the specialised paediatric neurosciences CRG or its NPOC, you can register as a stakeholder.
For details on our latest consultations please visit the NHS England consultation hub.
Get in contact
For any questions or queries relating to the work of the Specialised Paediatric Neurosciences CRG or its national programme of care, please contact: email@example.com