The Epilepsy Specialist Nurse Association (ESNA) has celebrated its 30th Anniversary this year. ESNA is the national professional organisation for all nurses supporting people with epilepsy. Its main role is to empower, educate and offer expertise for all professionals working in epilepsy care.

The 30th Anniversary conference was held in Glasgow at the wonderful William Quarriers Scottish Epilepsy Centre. This was held over 2 days with the title ‘transformation in epilepsy care’. There have been many developments and changes in epilepsy care over the last 30 years and this gave us the opportunity to reflect on some of these.

Day 1:

The first half day of the conference was broadly focused on diagnosis and management of epilepsy in terms of classification and treatment. It reflected on treatment options in terms of newer anti-seizure medications and the updated classifications of the epilepsies.

The conference was opened by Professor Martin Brodie with a keynote speech on the outcomes in newly diagnosed epilepsy.

This lead on to Dr Graeme Sills who is a Senior Lecturer in Pharmacology providing a fantastic insight into experimental and clinical pharmacology. He gave an overview of the pharmacokinetics of some of the ‘newer’ anti-seizure medications including cannabinoids and highlighted some very interesting points to be considered when discussing this as a treatment option.

Dr Ronit Pressler, Consultant in Clinical Neurophysiology provided an update on the new International League Against Epilepsy (ILAE) classification of seizures and epilepsy. She gave an insightful overview that identified the importance of using correct, up to date terminology. This also highlighted that epilepsy is forever changing and the importance of keeping up to date. She also spoke of the change to diagnose epilepsy after one unprovoked confirmed seizure with a 60% chance of reoccurrence.

[Read articles in ACNR’s epilepsy series]

Dr Pressler then presented on neonatal seizures and the importance of investigations, clear history, observations, and review was highlighted in the form of case studies. This also highlighted challenges of working with neonates and how this can be faced in practice. It was a fantastic interactive talk.

Day 2:

The morning sessions of the second day were focused on the wider issues faced in epilepsy in terms of the global need and working with hard-to-reach patients.

The morning was opened by Tolu Olaniyan, CEO Petrola Global Health and Consulting, who gave a very heartfelt talk around the global need for epilepsy nurses. She spoke passionately about the need for epilepsy nursing care globally and the challenges that are faced in being able to provide these. She spoke about training programmes in epilepsy that are offered globally and the positive impact that these are having on the population. It certainly was a thought provoking presentation that highlighted the many challenges for epilepsy nurse specialists across the world.

Samantha Dorney-Smith, Queens Nurse, spoke of the challenges of homelessness and managing epilepsy and long-term conditions. This talk was extremely thought provoking, particularly for people that work in the inner cities in providing care to hard-to-reach proportions of the population. This generated an interesting discussion with delegates as to how homelessness is met within their services and how they are engaging people in managing their health. It also gave very practical things to think about like appointment letters getting to the patients and how services contact service users. She also touched on professionals’ statutory duties in managing these patients.

Tolu then provided another very interesting presentation on the Learning Disabilities and Mortality Review (LeDeR) which was established in 2017 by NHS England and NHS Improvement. She spoke about its role in improving care, reducing inequalities, and preventing early deaths for people with a learning disability. She focused on the LeDeR report 2021, and how deaths of people with a diagnosed learning disability compared to the numbers within the general population. Importantly, it found that people with a learning disability and epilepsy are more likely to die younger. Tolu discussed how important it is that deaths are reported and referred for a LeDeR review as this enables lessons to be learnt and future practice to be informed.

Dr Maria Oto and Joanne Hill gave a presentation on the diagnosis of dissociative seizures and the burden of anti-seizure medication. They highlighted the role of The William Quarriers inpatient beds in assisting with the investigating and diagnosis. They presented case studies of patients who had attended for review, many of whom had been on several high dose anti-seizure medications with significant side effects. These presentations highlighted the importance of correct diagnosis, medication management and review and psychological support, and the impact that these can have on patients if not diagnosed or treated appropriately.

This led onto a presentation by Chris Bennett, Senior Children’s Epilepsy Nurse and Margaret Wilson, Paediatric Epilepsy Nurse Consultant. They spoke very passionately about the role of the epilepsy nurse specialist and how this has evolved over the last 25 years. It was a very thought-provoking presentation that highlighted the need for epilepsy nurse specialist/consultants and the importance of the roles that they provide including extended roles such as non-medical prescribing. They spoke of the developing treatments over the years and how these have helped in seizure management. They also spoke about the importance of genetic testing and how this will impact all patients in the future.

The ESNA Executive Board wanted to mark the 30th anniversary with recognition of someone in the field of epilepsy specialist nursing who has shown excellence in their care of people with epilepsy and have had a positive, lasting influence on people. The nominations for this award were:

  1. Shelley Anderton
  2. Christine Bennett
  3. Christine Cole
  4. Mel Goodwin
  5. Helen Hodgson
  6. Alison Holmes
  7. Yvonne Leavy
  8. Sheila Shepley
  9. Janine Winterbottom

The winner was announced at the gala dinner by John Paul Leach who gave the after-dinner speech which was filled with fun and laughter. The very worthy winner of the award was Yvonne Leavy, Clinical Nurse Specialist in Epilepsy, NHS Lothian. This award represents her outstanding contribution to epilepsy nursing over her career. Yvonne said on winning the award “This is greatly appreciated, and I hope we can use it as a catalyst to encourage joint work and collaboration across our ESNA family”. ESNA website, 2022.

Well done, Yvonne, a very worthy winner. Congratulations to all the nominees.

Thank you very much to all our speakers who made this conference a great success.