Scotland's specialist epilepsy nurses are life-savers. But there are simply too few of them – Lesslie Young

Many people with epilepsy can reach seizure freedom with the right medication, but for others it can affect almost every aspect of their life (Picture: Pedro Ugarte/AFP via Getty Images)

More than 55,000 people in Scotland live with epilepsy. It is a common but serious neurological condition, with around eight people in Scotland diagnosed with epilepsy every day.

People like Dave McTernan, from Edinburgh. Now 55, he was diagnosed with epilepsy when he was only 17.

Medication helped at first, but over time, his seizures became more and more frequent until he was having them almost every day.

He was forced to stop working, avoids leaving the house alone, can’t have a bath for fear of drowning and can’t cook on a conventional cooker.

Many people, with the right medication, can reach seizure freedom while others, like Dave, will have almost every aspect of their life affected by seizures.

Many of the things that people who do not have epilepsy take for granted are simply impossible for someone with epilepsy unless they have the right healthcare and support in place around them.

That’s where Scotland’s epilepsy specialist nurse (ESN) service comes into its own. These specialist nurses have the training, experience and expertise when it comes to managing the condition.

They are making an enormous difference to people who have epilepsy every day. Put simply, their support, advice and specialist work mean thousands of people in Scotland can live their lives to the full.

Their work is wide-ranging. It includes clinics, visiting patients on wards, assessments and reviews, responding to calls, and undertaking specialist work with people who are pregnant, have an addiction or a learning disability. Some staff also provide training, dispense medication and provide pharmacological advice to GPs and other medical practitioners.

At its heart, their work is to empower people with epilepsy by increasing understanding of the condition and provide them with the tools and support they need to manage their condition.

It is a personalised, person-centred approach that really works to reduce the impact of epilepsy on the individual and their family and make the day-to-day that much easier.

Their impact has been confirmed by a new report from the Epilepsy Consortium Scotland into ESN services during the Covid pandemic. The consortium wanted to understand the impact of the pandemic so we could find ways to improve services for those 55,000 people.

What came through clearly was the incredible contribution these ESNs are making, and the life-changing support they offer.

One word that kept coming up was “lifeline” as people described how they were supported during the unprecedented challenges posed by the pandemic.

We heard how they transformed people’s mental health and reduced anxiety, particularly around changes to medication.

But while their work has never been more needed, the report found these specialists were facing enormous workloads and a backlog in patients.

Researchers found they were extremely busy, with “potentially unmanageable” workloads of up to 3,500 patients for one or two nurses.

The pandemic added further pressure on the system and created bigger backlogs of clients.

Many ESNs were redeployed during the height of the pandemic, and pressure on the health system resulted in an increase in calls to the ESN helpline.

Nurses are regularly working beyond their contracted hours in order to meet the needs of their patients

We also found there was a ‘postcode lottery’ for patients needing an ESN. There are parts of the country – particularly in rural areas – where there are long waiting lists because there simply aren’t enough nurses.

Action is needed now to ensure that everyone, no matter their address, can access this vital support in a timely manner.

And we need to reduce the significant workloads which these nurses are facing. They are making an incredible contribution and we need to build on it so everyone with epilepsy has access to this essential support.

This would benefit the whole healthcare system. Through intervention and support, ESNs can cut avoidable A&E attendances and calls to consultants. In fact, one study found A&E attendances from children with epilepsy halved after a paediatric ESN was employed. Another study found a single nurse managed to reduce costs by nearly £85,000 over the course of a year.

We know ESNs offer vital support. What we need now is a significant expansion of the service. Everyone who has epilepsy – or any healthcare condition which requires lifelong management – deserves equal access to care and support.

To have a situation where people who have epilepsy and live in more rural areas struggle to access support is not just unfair but puts them at unnecessary risk and places even more pressure on our frontline health services.

At the same time, busier areas need to expand the number of ESN nurses to ensure patients get personalised services that meet their needs – so they can manage their condition and live their lives to the full.

You don’t have to cast your mind back too far to recall the weekly ‘clap for carers’ taking place up and down the country as we hailed the work our heroic healthcare workers were doing during the pandemic.

Now we need to make sure we continue to support them so they can keep changing lives every day.

As Dave says, “My ESN has literally been a lifesaver… knowing that there is someone only a phone call away who understands and has the knowledge and skills to help is comforting, and helps to remove a lot of anxiety around living with this condition”.

Scotland’s epilepsy nurses are at the bedrock the healthcare system’s support for people like Dave, and are doing incredible work, day in day out. We simply need more of them.

Lesslie Young is chief executive of Epilepsy Scotland and founder of the Epilepsy Consortium Scotland, the umbrella body for organisations and individuals concerned about the condition. The report from the Epilepsy Consortium Scotland is available online.