Epilepsy Specialist Service

Professor Lance Watkins talks about his experiences in working in a multidisciplinary Intellectual Disability (ID) team and the importance of having a knowledge of epilepsy management when working with people with Intellectual Disabilities.

Any psychiatrist working with people with Intellectual Disabilities requires a basic knowledge of epilepsy presentation and management. Epilepsy is the number one chronic health condition people with Intellectual Disability are diagnosed with, and it is associated with premature preventable mortality. It is not possible to manage co-morbid psychiatric disorders or symptoms without an understanding of the role of seizures and the impact from complex medication regimes, including potential side effects.

Therefore, why not strive for expertise in epilepsy management. Working with people with Intellectual Disabilities is extremely rewarding, develops long relationships, and is clinically challenging. We often work in the borderlands of epilepsy, where seizures and behaviour meet. We need an understanding of genetic susceptibility, complex epilepsy syndromes, multi-morbidity, and polypharmacy. Not only do we work with complex epilepsy we work with people with epilepsy with complex neuropsychiatric and behavioural presentations.

Training

I qualified from Cardiff University School of Medicine in 2009 and went on to complete my Core Psychiatry Training and Higher Training in Intellectual Disability Psychiatry on the South Wales rotation. During my higher training, I spent special interest time training at the Welsh Epilepsy Centre, a Tertiary surgical centre at University Hospital of Wales, Cardiff. I completed my CCT in 2017, working in a community learning disability team for 5 years. During this time, I continued with regular additional training sessions at the Welsh Epilepsy Centre before taking up my current role full-time in the Epilepsy Specialist Service in 2021.

Epilepsy Specialist Service

This is a tertiary community epilepsy service for people with Intellectual Disbaility and complex epilepsy. This service is a legacy of trail blazing work led by Professor Mike Kerr, Emeritus Professor of Epilepsy and Learning Disabilities, Cardiff University. A world leading authority who has advocated for people with epilepsy and ID, through a body of research and development of clinical services that now act as a model for best practice clinical care. The service accepts referrals from the comunity learning disability teams and neurology for people with complex epilepsy.

The team includes one consultant psychiatrist (6 sessions), one Band 7 Clinical Nurse Specialist in Epilepsy, and one Band 6 Clinical Nurse Specialist in Epilepsy. The service covers the footprint of three Health Boards with a population of an estimated 1.2 million. The current caseload is approximately 350 active patients with evolving complexity.

Epilepsy Care Pathway

The Epilepsy Care Pathway, first developed in 2012, and updated in 2021 outlines our standards for epilepsy care for this vulnerable population. The care pathway for adults with a learning disability and epilepsy focus on person centred care, where epilepsy management forms part of a holistic approach. The pathway is evidence based and informed by best practice models.

The pathway goal is to reduce health inequalities for people with a learning disability and epilepsy through access to appropriate care provision. This includes specialist services and investigations with reasonable adjustment. The document facilitates integration between the wide range of professionals and service levels involved in the management of people with a learning disability and epilepsy, and clearly defines professional standards expected.

The care pathway for adults with a learning disability and epilepsy is aligned to the National Institute for Health and Care Excellence, Clinical Guideline 137, Epilepsies: Diagnosis and Management, The Royal College of Psychiatrists, College Report 203, Management of Epilepsy in Adults with Intellectual Disability (2017), and Step Together; Integration Care for people with Epilepsy and Learning Disability (2021).

Our aspirations of good epilepsy care are:

1. Safety – reducing risk of harm, hospitalisation, and SUDEP

2. Seizure Freedom – Improving seizure control

3. Therapeutic balance – Seizure control vs adverse effect of treatment

4. Quality of life – The wider impact of epileps

Why should learning disability specialists have a key role in epilepsy management?

Epilepsy in association with Intellectual Disabilities should be considered as a complex neurodevelopmental condition, and not discrete diagnoses. As a result, clinicians and services need a multidisciplinary approach within a structured framework. The annual mortality risk is significantly lower for people supported by community LD teams than for those supported by neurology services.

Epilepsy has a pervasive impact across the lives of people with learning disabilities. One fifth of the population of people with learning disabilities across their lifespan have epilepsy. This population will often have complex epilepsy, with multiple seizure types, high rates of treatment resistance, and high rates of genetic aetiology. People with epilepsy not only having the burden of seizures themselves, but also the wider impact on all aspects of quality of life.

The management of epilepsy in people with learning disability can be challenging. Key factors in this challenge include the aetiology and severity of the epilepsy, diagnostic overshadowing, a limited evidence base for interventions and difficulties in investigation and communication. Assessing treatment response and the impact of medication effects is not straightforward.

People with epilepsy and learning disability have higher rates of co-morbidity (physical and psychiatric), higher rates of unnecessary hospitalisation, higher mortality rates, and significantly more health inequalities. This includes a lack of access to specialist assessment and treatment.

The Learning Disability Mortality Review Programme Report detailed the median age of death for people with learning disability and co-morbid epilepsy at 50 years of age, over 10 years younger than the other most common causes of death.

Supporting this population must be a core component of any learning disability service; the combination of the severity and associated chronic nature of the epilepsy requires specialist expertise.

Epilepsy nurses

In the UK we are in a privileged position to have support from epilepsy specialist nurses. This support is not as readily available across Europe. In particular, epilepsy specialist nurses with a background in learning disability nurses offer a unique blend of skills and expertise that are invaluable to our patients, families, and supporting the service.

The role of the epilepsy nurse is vast, so much so that on requesting a summary of the role from our lead nurse I received a six page summary document covering 20 cores aspects of care just in bullet points.

Role of epilepsy nurse:

• Development, contribution and review of local and national policies/pathways
• Supervision and development of junior colleagues
• Epilepsy Care Plans and Rescue Medication Plan
• Person centred care
• Vagus Nerve Stimulation Clinics
• Nurse-led Clinics
• Joint Consultant clinics
• Triage appointments
• Home visits and monitoring
• Referrals/support/transition
• Education & training
• Audit & research, contribution to journals
• Specialist prescriptions and medication
• Development and maintenance of links with others, including;
• Annual Risk Acknowledgement Form - Valproate
• Welsh Epilepsy Nurse meetings
• Student mentorship

Research

As a specialist service, our role is to endeavour to follow evidence-based practice and adhere to National clinical guidance, with regular audit. This includes developing research projects locally and supporting colleagues within wider services to engage with research at any stage or level of expertise. We work in a number of national and international research collaborations.

Research interests include larger successful grant applications with a number of NHIR portfolio projects active. I have affiliation with the long established University of South Wales (UDIDD) research group and the National Centre for Mental Health, Cardiff. More recently, I have taken on a formal research role with University of Plymouth (CIDER) with Professor Rohit Shankar, a mentor, and world leading authority of epilepsy and Intellectual Disabilities.

The Future

As we move towards precision medicine, epilepsy treatment is evolving and there are newer treatment options available, often restricted to specific populations on specialist prescriptions. Our service take the lead on prescribing and monitoring these specialist prescriptions in the community. We have developed close links with the two regional epilepsy centres at UHW and Morriston Hospital.

Through these relationships, we have support and access to the regional surgical MDT, Genetics MDT, TSC MDT, prolonged neurophysiology, and treatments. This role will to expand in future, with prescribing targeted at specific genetic diagnoses and the developmental and epileptic encephalopathies (Lennox Gasteau Syndrome, Dravet Syndrome). The service also looks to support the development of skills and expertise in the wider community learning disability teams.

Professor Lance Watkins MBBCh MRCPsych MSc PGDip (MedEd) FHEA
Consultant Psychiatrist and Epilepsy Pathway Lead, Mental Health and Learning Disabilities Service Group, Swansea Bay Univeristy Health Board
Visiting Professor University of South Wales (UDIDD)
Associate Professor University of Plymouth (Hon) (CIDER)
Clinical Lead for Learning Disability Research, National Centre for Mental Health (NCMH)