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.
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 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 firstname.lastname@example.org to find out how you can help.