Epilepsy Society Blog

I have been lucky when it comes to epilepsy. Lucky, that I was diagnosed correctly and lucky that I was referred to specialist centres where I received the correct assessment and treatment to stop my seizures – in my case successful brain surgery.

Sadly, I know that many people are not so lucky and haven’t experienced the good care that I did and that’s not right! Luck shouldn’t play any part when it comes to getting optimal treatment for this condition.

That’s why I, like many others, am deeply committed to improving life for children, young people and adults with epilepsy.

Back in 2009 I was delighted to be asked to be a patient representative within the Epilepsy Guideline Development Group, responsible for producing the update for the National Institute for Health and Clinical Excellence (NICE) on the epilepsies clinical guideline,  published in 2004.

The partial update of the NICE guidelines for epilepsy has been published and I believe when put into practice, it will ensure that more children, young people and adults with epilepsy receive a prompt and accurate diagnosis followed by optimal and individualised treatment  for their seizures.

In addition, those children, young people and adults with epilepsy whose seizures have not responded to the recommended drug treatments in the new guidance for their particular type of epilepsy and therefore have complex epilepsy will be referred to specialist epilepsy centres where multi disciplinary teams have experience of hard to treat epilepsies.

I feel very privileged to be part of a process aimed at improving the lives of people with epilepsy. The Guideline Development Group, mainly consisting of expert epilepsy clinicians and nurses, put a painstaking amount of work into these new guidelines. Our recommendations were not made lightly; we spent hours reviewing all the available evidence to ensure that people with epilepsy and those yet to be diagnosed, receive the best possible NHS treatments available.

Sally Gomersall