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Number of epilepsy specialist nurses in Wales is inadequate, says leading epilepsy charity

29 Sep 2016
  • There are around 26,000 adults in Wales living with epilepsy
  • 88 epilepsy nurses are needed in Wales to provide adequate care for people with epilepsy. Currently, there are only nine

Epilepsy charity, Epilepsy Action Cymru, is leading the call for more epilepsy specialist nurses in Wales. The charity launched the campaign ‘Epilepsy Nurses: Quality, Value, Care’ with an event at the Senned on Wednesday 28 September.

There are around 26,000 adults in Wales living with epilepsy. One person in every 94 has 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 that there should be at least 88 epilepsy specialist nurses in Wales to provide an adequate level of care for people with epilepsy. Currently, there are only nine specialist nurses in place. In some health board areas there are no epilepsy nurses at all.

Simon Wigglesworth, deputy chief executive of Epilepsy Action, said: “Epilepsy specialist nurses play a crucial role in the care of people with epilepsy, yet there are far fewer epilepsy nurses in Wales than are needed. This means that many people with epilepsy in Wales are not receiving the care and support they need – and deserve.
 
“Epilepsy can be a confusing and isolating condition, and there are over 40 different types of seizure. This means that everyone’s experience of epilepsy is very different. Epilepsy specialist nurses are a lifeline, offering expert knowledge and support in the diagnosis, treatment and care of people with epilepsy. They 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. We are calling on the Welsh Government to work with the necessary agencies to provide more epilepsy specialist nurses in Wales. They are vitally needed.”

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 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.

Michael Dix-Williams, 48, from Port Talbot has had epilepsy since he was 13. In the past few years, the dedication and perseverance of his epilepsy specialist nurses has helped him to become seizure free. Michael tried different epilepsy medicines but none of them controlled his seizures. 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. Finally in 2015, the right settings were found. Michael has now been seizure-free for 14 months- the longest time without a seizure since he was 13.

Michael said: “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. I feel like I have got my life back.”

‘Epilepsy Nurses: Quality, value, care’ will run for the rest of 2016 and in to 2017. Epilepsy Action Cymru is calling on people in Wales to contact their Assembly Members to encourage them to engage with the campaign. People can find out more by visiting epilepsy.org.uk/nursecampaign or emailing campaigns@epilepsy.org.uk.