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of everyone affected by epilepsy

National commissioning of paediatric epilepsy surgery

4 March 2011

Epilepsy Action has been discussing paediatric epilepsy surgery (surgery for people under 18) in England with the Department of Health.

A significant outcome of that meeting is that the government is willing to consider a proposal that epilepsy surgery for children will be nationally commissioned. If the government agrees to this proposal it will become a Department of Health responsibility to ensure paediatric epilepsy surgery is available in sufficient numbers and with sufficient quality across England.

Epilepsy Action believes this proposal could significantly improve access to paediatric epilepsy surgery and is supporting the proposal.

Epilepsy Action is concerned that paediatric epilepsy surgery has been poorly provided for over recent years. Its ability to radically improve the lives of young people and, in many cases, cure their epilepsy has been missed. It is our belief that about 400 children a year, of all ages, could benefit from surgery but only about 100 operations are currently being undertaken. In the UK there is a backlog of up to 2,300 children who probably should have already had surgery, and could still benefit from it.

It is also clear to us that not performing surgery, or delaying it for too long, can harm the cognitive ability of many young people. This is backed by evidence from, among others, Professor J Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy at Great Ormond Street Hospital. The benefits to the individual and society of early and effective surgery are immense.

Of course not all children with epilepsy can benefit from surgery as their epilepsy has a cause that cannot be treated by surgery. For those who can, however, this proposal could have a major impact. If you would like to know more about this, then read this article by Professor Helen Cross.. This was originally published in Epilepsy Professional so is slightly technical but outlines the case for and benefits from paediatric surgery very well.

What we want you to do

We are asking our supporters to write to Dr Tom Kenny, the Medical Adviser to the National Specialised Commissioning Team, and support the proposal. A template letter is below which you can use.

If you agree with us please send this letter to Dr Kenny to arrive before 17 March.

Template letter

Dr Tom Kenny
Medical Adviser
National Specialised Commissioning Team
Southside 2nd Floor
105 Victoria Street
March 2011

Dear Dr Kenny
Proposal that National Specialised Services commission paediatric epilepsy surgery
I would just like to put on record my/our support for the above proposal and very much hope that it will lead to greatly improved access to surgery. It is estimated that 400 children could benefit each year from surgery but that only about 100 operations take place.
We hope that a future in which this service is commissioned nationally will lead to enhanced availability. We therefore request that this need for increased availability is built in to your proposal wherever possible. National commissioning will be of limited benefit unless it leads to improved availability.
Yours sincerely

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