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Epilepsy Nurses: Quality, value, care

Epilepsy Action Cymru has launched a campaign to appeal to the Welsh Government to work with the necessary agencies to provide more epilepsy specialist nurses in Wales. The campaign was launched at the Senedd on Wednesday 28 September. 

There are around 26,000 adults in Wales living with epilepsy. This means that one person in every 94 is living with the condition.

In 2007 the Welsh Neuroscience External Expert Review Group recommended that each specialist nurse should have caseload of around 300 patients. This means there should be approximately 88 epilepsy specialist nurses for adults with epilepsy in Wales. There are still only nine.

Epilepsy nurses

Epilepsy specialist nurses are at the heart of caring for thousands of people living with epilepsy in the UK. These vital nurses promote good practice and act as a specialist resource in the diagnosis, treatment and care of people with epilepsy.  They also manage clinics and offer people counselling, advice and discussion on all aspects of their condition. They also work between GP practices and hospitals, developing the knowledge of GPs and practice nurses.

There are far fewer epilepsy nurses in Wales than there should be. Those posts that do exist are disproportionally distributed. In some health board areas there are no epilepsy nurses at all.

An epilepsy nurse can make a huge difference in the life of a person with epilepsy.

Michael Dix-Williams, 48, from Port Talbot, has had epilepsy since he was 13 years old. Michael tried different epilepsy medications over 25 years, but nothing could get his seizures under control. In 2010 he heard about an epilepsy treatment called vagus nerve stimulation (VNS) therapy. This involves a small electrical device, like a pacemaker, which is implanted under the skin and sends electrical impulses to the brain. This can reduce the number of seizures that someone has or make them less severe.

Michael received a VNS implant and was introduced to the epilepsy specialist nurse team in Cardiff. The nurse team helped him through the next two years, working tirelessly to get the settings of the implant right for him. This period was fraught with cluster seizures and hospital admissions, sometimes to intensive care.

Finally in 2015, the right settings were found and Michael has now been happily seizure-free for 14 months. Michael said: “This is the longest time that I have been seizure free since 1 was 13. I feel like I have got my life back. My partner and I are able to go out walking without the fear that I will have a seizure. I cannot express how great this is.”

“If it wasn’t for the nursing team, my life wouldn’t be like this. They had the time to work so closely and consistently on the settings of my VNS until we got it right. As well as this, their care and accessibility made them an invaluable resource in my life. It was such a difference to be able to make an appointment and see them quickly, rather than waiting for an annual consultant appointment. I would honestly say that an epilepsy specialist nurse is worth their weight in gold for someone like me.”

Email us at campaigns@epilepsy.org.uk to find out how you can help.

Event Date: 
Wednesday 14 September 2016 - 09:32

Comments: read the 2 comments or add yours


I was not born with Epilepsy,I was 18,when I had my motorbike accident,the top of my spine was pushed up into my skull,fractured it,then it scraped my brain,and I had meningitis,I`m only telling you this as `ANYONE`! can become epileptic,you don`t just have to be born with it,you can get through ANY injury to the brain,also strokes,etc.I have been on Epanutin,Epilim,Tegretol,Tegretol Retard,etc.I did work in a Remploy factory fo over 20 years and there were other people with epilepsy there,some better some worse than me.I never had an Epilepsy Nurse,I only saw the Neurologist,but some of my workmates said their epilepsy nurse was wonderful.So `YES`! we do need more epilepsy nurses-SOONER THAN LATER.I live in Swansea

Submitted by David Wheeler on

Epilepsy Nurses in N Ireland are useless, you used to phone them, if they were out at a clinic you could leave a message but that has changed. You can only contact them 9am-12am working days, with no answer machine. That's not much help if you've got a serious issue, something worrying you, that your GP can't cope with

Submitted by Gail Barry on