Campaigning for better services in Wales

What’s the issue?

There are around 32,000 people in Wales with epilepsy. This means that one person in every 90 people is living with the condition. However, too many people with epilepsy in Wales are unable to access the health care and support they need.

Epilepsy Action Cymru has heard from people who are having to wait years for an appointment with a specialist.

Many people with epilepsy also do not have access to epilepsy specialist nurses. Nurses can offer much-needed support and advice between appointments. Despite there being an estimated 32,000 people diagnosed with epilepsy, there are currently only 8 full-time adult epilepsy specialist nurses in the whole of Wales.

Epilepsy specialist nurses are at the heart of caring for people living with epilepsy. These vital nurses promote good practice and act as a specialist resource.

They help in the diagnosis, treatment and care of people with epilepsy. They also manage clinics and offer people counselling, advice and discussion on their condition. They also work between GP practices and hospitals, developing the knowledge of GPs and practice nurses.

My Neuro Survey

In 2021/2022, The Neurological Alliance ran a survey – My Neuro Survey – to give a picture of the experience of care, treatment and support for people affected by neurological conditions. The UK wide survey was run in partnership with the Welsh Neurological Alliance and included a version specifically for children and young people with a neurological condition.

Nationally, over 8,500 people shared their experiences and reported:

• Delays to treatment and care can change your life forever.
  55% of adults and 60% of children and young people living with a neurological condition experienced delays to routine appointments with specialists in the last year​.
• Most people with a neurological condition are unable to access the mental wellbeing support they need.
  40% reported their mental wellbeing needs are not being met at all.
• Finding out you have a neurological condition is scary and confusing.
  Receiving the right information and support can make a real difference. 2 in 10 were not given an explanation of their diagnosis. Almost 4 in 10 adults reported not being given any information at all.

Given the overall findings the submitted responses specific to epilepsy and localised to Wales highlight a number of specific and concerning issues which fit against the three key findings:

• 62% of respondents experienced delays with a routine appointment with their neurologist
• 58% of respondents experienced delays with a mental health appointment
• 44% of respondents stated that their mental health had become worse over the past 12 months
• 41% of respondents stated that they felt that their mental wellbeing needs were not being met at all
• 38% of respondents stated that they waited more than 12 months for a diagnosis after first experiencing symptoms
• 68% of respondents had not been offered a care and support plan to help manage their neurological condition in the last three years

What we are doing

Epilepsy Action Cymru has been raising concerns about health services in Wales and pushing for much-needed improvements. The focus of our efforts has been on highlighting unacceptable waiting times for epilepsy appointments and the serious shortage of epilepsy specialist staff.

Epilepsy Action Cymru is calling for more investment into additional resources. We want the relevant agencies to work together to increase the number of epilepsy specialist nurses in Wales.

We have also highlighted the effectiveness of Open Access models that have been adopted by some Health Boards in Wales. Patients can call or email the open access (OA) service at any time to inform them of changes in epilepsy control and will receive a response within around 48 hours with clinical advice. Patients are triaged over the phone.

In the Swansea Bay University Health Board, the Open Access service has had a huge impact in reducing waiting times

What next?

While we need urgent action to address some of the most pressing challenges facing people with epilepsy, we also need a long-term solution to deliver high quality epilepsy health services to people in Wales into the future.

Moving forward we will continue to work with decision makers, healthcare professionals and people affected by epilepsy to improve services and outcomes in Wales.