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This article was published in May 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

New guidelines to increase children’s epilepsy surgery

29 May 2013

Small girl in hospital bed with teddy bearEpilepsy Action, in association with NHS England, has developed new guidelines to help more children with epilepsy benefit from surgical procedures. The guidance has been developed for paediatricians and will help to increase the number of children referred for epilepsy surgery

The guidelines have been produced following the introduction of a new Children’s Epilepsy Surgery Service (CESS) last year. Children’s epilepsy surgery in England is now nationally commissioned after the NHS chose four CESS centres to specialise in providing paediatric surgery for children with epilepsy. These are Bristol’s Frenchay Hospital, Birmingham Children’s Hospital, Great Ormond Street Hospital with King’s College Hospital and Liverpool’s Alder Hey Children’s Hospital with Royal Manchester Children’s Hospital.

The four specialist centres will provide the best quality service and increase the capacity nationally to provide surgery for children with difficult to control epilepsy. Children with epilepsy who meet certain criteria and who may be suitable for surgery should be referred to one of the centres for further investigation.  Most surgery will be carried out at the CESS centres.  In some cases surgery for children five years old and over will continue to be carried out at local centres elsewhere in England.

Small boy in hospital bed with teddy bearIt is estimated that by 2015-16 around 350 children each year will benefit from surgical expertise which could significantly impact on their quality of life. In recent years, only around 110 children each year have undergone surgery to improve their epilepsy.

The new guidelines, which will be shared with paediatricians in the form of a practitioners’ booklet and quick reference card, highlight when and how children should be referred to a CESS centre. It is hoped the guidance will lead to an increase in referrals so that more children who could benefit from surgery are given the opportunity to do so. New resources have also been developed for parents to help them find out more about surgery, including a guide to surgery for parents.  

Simon Wigglesworth, deputy chief executive at Epilepsy Action, said: “Surgery can radically improve the lives of young people and, in many cases, cure their epilepsy. These specialist centres should ensure that more children with epilepsy receive the surgery and quality care they need. But we need paediatricians to know that they exist and that the option to refer is there. We hope these resources will raise awareness of the increased capacity for children’s surgery and encourage more referrals from paediatricians treating children with difficult to control epilepsy. This way, more children who could benefit from surgery will be given the opportunity to do so.”

Teddy bear in hospital bedJames Palmer, clinical director of specialised services at NHS England said: “These guidelines will help raise clinical awareness of this valuable new service. The national Children’s Epilepsy Surgery Service will enable more children to benefit from this specialised treatment which can have huge quality of life benefits.”

Chris Verity, chair of the Epilepsy National Clinical Coordinating Group, said: “This initiative gives us the chance to develop a world-class epilepsy surgery service for children and young people in England.”

Paediatricians and other health professionals can download copies of the CESS referral guidelines by visiting epilepsy.org.uk/cess Request a paper copy of the guidelines by calling 0808 800 5050. Parents can also call this number for advice and information about surgery.

The expansion of specialist brain surgery and assessment for children with epilepsy is a result of the Safe and Sustainable review of children’s neurosurgical services. For more information about epilepsy and surgery for children, visit epilepsy.org.uk/childrenssurgery

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