New guidance to help paediatricians refer epilepsy patients

Great Ormond Street Hospital (GOSH) welcomes new guidance to help paediatricians refer young epilepsy patients more effectively.

The guidance has been produced by Epilepsy Action in collaboration with NHS England and follows the designation of four Children’s Epilepsy Surgery Services (CESS) in 2012. These are:

• Great Ormond Street Hospital with King’s College Hospital (KCH)

• Bristol’s Frenchay Hospital 

• Birmingham Children’s Hospital

• Liverpool’s Alder Hey Children’s Hospital with Royal Manchester Children’s Hospital.

The guidelines have been developed in recognition of the fact that there still remains a lack of awareness amongst Primary Care health professionals about when a child should be referred for epilepsy surgery.
This will be shared with paediatricians in the form of a practitioners’ booklet and quick reference card, highlighting when and how children should be referred to a CESS centre for assessment.

GOSH and KCH’s particular expertise is in providing assessments and surgery to babies with the condition, who represent the most challenging group of surgical patients in the country.

Julianne, mother of GOSH patient Thomas, is supportive of the new guidance tools. Thomas underwent two hemispherectomy procedures in 2012, when he was just a few months old. The first few weeks of his life were blighted by unrelenting seizures, which were not picked up by his GP. Although Thomas got the referral he needed, and is now doing well after successful surgery at GOSH, Julianne feels that the family could have been better supported in those early days to recognise his symptoms and provide the appropriate recommendation for treatment at a specialist centre.

Julianne explains: "It was evident to me that something was wrong at Tom’s eight week check, but even though I’d asked my GP directly if there was cause for concern, he said there wasn’t and suggested that he had reflux. When his seizures worsened, we were referred to our local hospital, which neither had the facilities nor the expertise to tell us what was causing Tom’s seizures. It then became clear to us that we needed to go to GOSH. We knew of the MRI facility and Rapid Assessment Neurology Unit (RANU) at GOSH and just two weeks after Tom’s diagnosis, he underwent the first of two surgeries that would change his life.”

“I think it’s vital that GPs and other health professionals are aware of these new information tools for identifying and referring babies and children who present with symptoms of epilepsy. Our experience with Tom illustrates the importance of an early referral. Tom’s seizures in those early weeks and months of life were all consuming for him, to the extent that he didn’t even cry because he was so distracted by seizures. Surgery is a difficult step for parents to take, but it was definitely the right one for Tom.”

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