Background

• Epilepsy is the most common significant long-term neurological condition of childhood and affects an estimated 112,000 children and young people in the UK.¹

• Definitive diagnosis is difficult due to lack of specific diagnostic test, and therefore both under and over diagnosis occurs. Recorded prevalence of epilepsy has reduced in recent years, which may partly reflect more specific diagnosis.² However, even among those who have a diagnosis of epilepsy, up to a third continue to have seizures despite treatment.³

• Epilepsy is associated with a higher risk of mental health problems. 37% of children with epilepsy have a co-existing mental health disorder, a higher prevalence than found in other long term childhood conditions.⁴ Despite this, Epilepsy12 audit of paediatric organisations found that only 12.8% (19/148) Trusts/Health Boards in England and Wales provided mental health provision within epilepsy clinics.⁵

• Not all emergency admissions to hospital for epilepsy or seizures are avoidable. However, there is evidence that education, support with epilepsy medications and emergency seizure management plans can reduce emergency admissions.⁶

• Transition to adult epilepsy services is a time of increased risk, and well-coordinated specialist epilepsy services can reduce mortality among young people with epilepsy after transition to adult services.⁷ Despite this, in 2018 24.3% of Trusts / Health Boards in England and Wales had no agreed referral pathway to adult service, and only 35.8% had a dedicated outpatient clinic for young people with epilepsies.⁸

Key findings

• Between 2014/15 to 2017/18 emergency hospital admissions rates for epilepsy have remained relatively static, having fallen over the preceding decade for children and young people aged under 19 years in England, Scotland and Wales. In 2017/18, the rates ranged from 67 to 88 cases per 100,000 children and young people per year.

• Emergency admissions for epilepsy are associated with a deprivation gradient – but the deprivation gap is improving in England
  • In Scotland, children living in the most deprived areas are nearly twice as likely to be admitted to hospital with epilepsy compared to their least deprived peers.
  • In England, by contrast, the inequality gap has closed for emergency admissions for children and young people with epilepsy from 2005/6 to 2015/6 – driven by improvements in rates for the most deprived quintile, across all age bands.⁹

What does good look like?

Investment in the epilepsy workforce. NICE recommends a comprehensive multidisciplinary approach to achieving the best outcomes for children and young people with epilepsies.¹⁰ However, Epilepsy12 found wide variation in standards of care for children and young people with epilepsy. For example, 22.3% of Trusts / Health Boards in England and Wales had no epilepsy specialist nurse provision.¹¹ It is critical that children and young people have sufficient access to the full paediatric epilepsy team in order to increase diagnostic accuracy, improve ongoing management and provide holistic support to the child and their family.

 Integrated services should be designed around paediatric epilepsy patients, so their physical and mental health needs are diagnosed and treated together in a holistic approach. The development of the Organisation of Paediatric Epilepsy Networks in the UK (OPEN UK) will facilitate a network approach to care.¹² The expectation is that this will accelerate adoption of best practice across all areas of the country, and harmonise existing referral pathways to establish shared care with tertiary paediatric neurology services, as well as ensure smooth transition for young people with epilepsies to a suitable adult service.

Increased involvement of children, young people and their families with their epilepsy care is considered essential for the continuous improvement and long-term impact of the care delivered by epilepsy services in the UK. RCPCH&Us have developed advice and resources on how to utilise the UNCRC rights in clinical practice.¹³

Policy recommendations

What can health professionals do about this?

• Individualised epilepsy action plans. Up to a third of children with epilepsy do not have an individual healthcare plan (IHP) at school to ensure they are safe and included in all aspects of school life.¹⁴ RCPCH also produce an Epilepsy Passport, encompassing regular medications and emergency plans, which children and young people and their families should carry with them.¹⁵ Schools should make use of these, and the individual healthcare plan tailored for educational settings, and ensure they are shared with all relevant professionals.¹⁶
• Audit data. Make sure your service is participating in the Epilepsy12 audit and use the findings to understand what you are doing well, and how your service could be improved. Professionals in Scotland and Northern Ireland, two countries which are not currently participating in Epilepsy12, should still monitor their service processes and outcomes to ensure they are providing comparable quality of care for their patients.
• Vigilance on mental health. Remember that children and young people with long term conditions have significantly higher rates of mental health problems, and that this is highest among children and young people with epilepsy. Recognise the early signs of mental health problems, and direct them to appropriate support and mental health services at an early stage.
• Resources:
  • NICE clinical guidelines on the diagnosis and management of epilepsy¹⁷
  • RCPCH Epilepsy passports¹⁸
  • Young Epilepsy’s Individual Healthcare Plans for schools¹⁹

Contributing authors

• Dr Ronny Cheung, RCPCH State of Child Health Clinical Lead
• Melanie David-Feveck, RCPCH Research & Quality Improvement Division
• Calvin Down, RCPCH Research & Quality Improvement Division
• Dr Colin Dunkley, RCPCH Epilepsy12 Clinical Lead
• Rachael McKeown, RCPCH State of Child Health Project Manager
• Dr Rakhee Shah, RCPCH State of Child Health Clinical Advisor