Institute of Child Health

Children across England set to benefit from expanded national service

Children with drug-resistant epilepsy across England will benefit from a major expansion of specialist brain surgery and assessment, the NHS has announced today. 

Epilepsy is a tendency to have recurrent seizures and affects around 600,000 people in the UK.  However, approximately one third of patients do not respond to medication, continuing to experience seizures. For a proportion of this group brain surgery can be highly effective, leading to seizure freedom in up to 80 per cent of cases. 

Great Ormond Street Hospital for Children NHS Foundation Trust is currently the main centre carrying out this type of highly specialised surgery. From November 2012 existing services in other parts of the country will be developed in Bristol, Manchester/Liverpool and Birmingham, enabling doctors to treat three times as many patients as they currently do.  

Professor Helen Cross, The Prince of Wales's Chair of Childhood Epilepsy, UCL-Institute of Child Health, Great Ormond Street Hospital for Children NHS Foundation Trust and Young Epilepsy said the expansion of the service was great news for families and children with epilepsy.

“Seizures are caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal message passing between brain cells. This disruption results in the brain’s messages becoming halted or mixed up.  There are around forty different types of seizure and a person may have more than one type,” Professor Cross said.

“Epilepsy surgery allows us to remove or modify part of the brain. It is not a new concept and has been used as a tool in the management of epilepsy for more than 100 years. However, the benefits are not always widely understood.  Having four expert services across the country will enable us to make this surgery available to far more children, as well as reduce current waiting times for assessment for possible surgery.”

Professor Cross said having a child with epilepsy has a major impact on family life. “Seizures are unpredictable and managing them can be difficult.  When surgery is discussed sometimes parents are worried or see it as a last resort.  However, having this type of procedure can make a huge difference.  Many children are completely seizure free after their operation and go onto lead more normal lives,” she said.

“Generally the earlier children are identified and operated on the better.  In children with early onset epilepsy, operating in the first year or two of life gives them the best chance for development in the future.”

A recent report by 'Young Epilepsy' (formerly The National Centre for Young People with Epilepsy)  estimated up to 300 more children a year could benefit from this treatment in England and Wales.  Today’s announcement will see a trebling in the number of children treated each year from 125 to approximately 350 by 2015-16.

Epilepsy Action’s Deputy Chief Executive, Simon Wigglesworth said: “We’re delighted with today’s announcement which will be of great benefit to children with epilepsy and their families. This is a huge move forward that will help build skills and expertise in the field of epilepsy. Most importantly it will give more children with difficult to control epilepsy a chance to have surgery which could significantly impact on their quality of lives. We would strongly encourage those responsible for the care of children with difficult to control epilepsy to evaluate their patients and consider whether they may be suitable for surgery and refer them to the new centres for assessment.”

“There is strong evidence that the sooner the surgery is performed the better the long term outcome for the child’s development. This announcement makes that life changing treatment available to more children.”

Children when referred to these services will undergo a series of specialist investigations and assessments to determine whether a child is suitable for surgery. One challenge will be ensuring suitable children are referred in a timely fashion.

Anne Moore, President of the Society of British Neurological Surgeons, said: “We welcome today’s announcement of new investment in vital services for children with severe epilepsy to make them safe and sustainable in future.  This will enable more children to benefit from this specialised treatment which can have huge quality of life benefits.”

Ends 

Editor’s notes:

•         The full list of centres that will provide surgery is as follows:

•                  Birmingham Children’s Hospital NHS Foundation Trust

•                  North Bristol NHS Trust with University Hospitals Bristol NHS Foundation Trust

•                  Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) (GOSH will be supported by Kings College Hospital NHS Foundation Trust)

•                  Alder Hey Children’s NHS Foundation Trust with Central Manchester University Hospitals NHS Foundation Trust

•         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.

•         Next week (20-26 May) is National Epilepsy Week.

Spokespeople interviews

The following spokespeople are available for interview, through the communications team below:

•                  Professor Helen Cross, GOSH

•                  Simon Wigglesworth, Epilepsy Action

For more information:

NHS Specialised Services communications team on 020 7025 7520 or nhsspecialisedservices@grayling.com