Nine specialist nurses caring for 26,000 patients with epilepsy in Wales, charity warns

An epilepsy charity has called for action, after it revealed there were just nine specialist nurses looking after 26,000 epileptic patients in Wales.

Epilepsy Action Cymru said the figure was about a tenth of the number of specialist epilepsy nurses needed to care for people with the condition.

The Welsh neuroscience external expert review group recommended in 2007 that each specialist nurse should have a caseload of around 300 patients. 

Inadequate level of care 

This means there should be at least 88 specialist nurses in Wales to provide an adequate level of care, Epilepsy Action Cymru said.

It said some health boards in the country had no epilepsy nurses.

It launched a campaign calling for more specialist nurses at the Senedd, the Cardiff home of the National Assembly for Wales, on 28 September.

Epilepsy specialist nurses offer expert knowledge, support and counselling, manage clinics and provide a link between GP practices and hospitals. 

Life-changing nursing 

Port Talbot resident Michael Dix-Williams has epilepsy, and said a specialist nurse was ‘worth their weight in gold’. 

An epilepsy specialist nurse team in Cardiff worked with him for 2 years to improve the settings on a nerve stimulation implant he received.

This means he has now been seizure-free for 14 months, his longest period without a seizure in 35 years. 

He said: ‘If it wasn't for the nursing team, my life wouldn't be like this.’

Campaign awareness

The charity is calling on people in Wales to contact their assembly members to encourage them to engage with the campaign.

A Welsh government spokesperson said its neurological conditions delivery plan sets out how it ‘will make a tangible difference for people living with conditions such as epilepsy’.

The spokesperson added: ‘There is no single model for neuroscience services: what works in one place may not work in another. 

‘We, therefore, expect health boards to consider access to neurological specialist nurses as part of their assessments.’