15 May 2012
In spring 2011 we asked you to support our campaign which advised The Department of Health in England to nationally commission paediatric epilepsy surgery. We’re delighted to tell you that with your support this has been achieved. The names of four centres which will provide specialist surgery for children with epilepsy have been announced. They are:
- 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 Trust (GOSH) supported by Kings College Hospital NHS Foundation Trust
- Alder Hey Children’s NHS Foundation Trust with Central Manchester University Hospitals NHS Foundation Trust
The new, expanded, service will become available at these centres from November 2012.
Epilepsy Action sat on the group that developed the service specification for the surgery. We believe that this is a major campaigning success and big step forward. These ‘centres of excellence’ will increase the number of operations carried out each year on children and young people. Currently only 100 to 125 children have surgery, with Great Ormond Street NHS Foundation Trust the main centre carrying out this type of highly specialised surgery. The new service will see the number of operations increasing to around 350 by 2015/16.
This will improve the quality of life for many children and their families.
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.
Of those that undergo surgery, 70 per cent (nearly three quarters) lead seizure free lives afterwards while a further 20 per cent see a reduction in the number of seizures they have. In particular the evidence suggests that early epilepsy surgery has significant advantages in children five years of age and under.
Not all children with epilepsy can benefit from surgery. This depends on the cause and type of the epilepsy. However for those who may benefit, this proposal could be life-changing.
Thank you to everyone who wrote to the National Specialised Commissioning Team, supporting our recommendation for this. You helped show that there is demand from patients, families and carers for better surgical options for epilepsy.
Comments: read the 2 comments or add yours
Comments
i had brain sugrey when i turned 16 at kings college hospital in london as it is the best age to operated as that s when your life is just about to start. they removed my left side temple lope. that was 18 yrs ago now my life is just great i have the life i never ever thought i would have thanks to my family my consultant up here and the consultant who did my surgrey. there was loads off complacations and there were loads off risks but i had 100% trust in the consultant and i was 100% sure he was going to cure me. Now i work drive and live life to the full thanks to him. i think they should to more surgrey up in the north east and all over the country and help other people who have epilepsy get the life what they always wanted and make there wishes come true.
It's truly fantastic news. I remember a year ago sending my support letter to National Specialised Commissioning Team hoping one day our daughter who has complex epilepsy since 4 years old might be given an option of the surgery. Now she is 13 and has been through many assessments and recently met epilepsy surgery team but we spent many many years struggling to control her epilepsy with different AED and wondering about the surgery. I sincerely hope those who can benefit from the surgery will be able to access widely and quickly to the surgery soon in UK.