Epilepsy

Epilepsy is the most common long term neurological condition of childhood and it affects an estimated 112,000 children and young people in the UK, although diagnosis is not straightforward.

37% of children with epilepsy have a mental health condition

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

Additional information

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

  • NHS England should support the ongoing establishment of a UK wide clinical network for epilepsy, as per the Long Term Plan commitment. Appropriate support and resources must be provided to support key network functions at national and regional levels. Networks should include links to mental health, education and transition and include input from both multidisciplinary professionals and family / young person engagement.
  • All NHS Trusts across England should engage with the Epilepsy12 National Audit Programme.
  • All NHS Trusts across England should invest in sufficient epilepsy specialist nurses to ensure children and young people are supported across the health and education pathways. Unnecessary acute admissions and emergency department attendance should be decreased and there should be reduced avoidable epilepsy deaths.
  • We welcome NHS Scotland’s development of the Scottish Paediatric Epilepsy Network (SPEN), which provides a managed clinical network to improve epilepsy services. NHS Scotland should ensure this network is maintained. To expand this, NHS Scotland should support the ongoing establishment of a UK-wide clinical network for epilepsy. Appropriate support and resources should be provided to support key network functions at national and regional levels. The network should include links to mental health, education and transition and include input from both multidisciplinary professionals and family / young person engagement.
  • Scottish Government and NHS Scotland should support the implementation of the Epilepsy12 National Audit Programme to cover Health Boards in Scotland, or collect and report comparable data with accompanying action planning and quality improvement.
  • All Health Boards in Scotland should invest in sufficient epilepsy specialist nurses to ensure children and young people are supported across health and education pathways. This resource would decrease unnecessary acute admissions and emergency department attendance as well as reducing avoidable epilepsy deaths.
  • NHS Wales should support the ongoing establishment of a UK wide clinical network for epilepsy. Appropriate support and resources should be provided to support key network functions at national and regional levels. The networks should include links to mental health, education and transition and include input from both multidisciplinary professionals and family / young person engagement.
  • All Health Boards across Wales should engage with the Epilepsy12 National Audit Programme.
  • Health Boards in Wales should invest in sufficient epilepsy specialist nurses to ensure children and young people are supported across the health and education pathways. Unnecessary acute admissions and emergency department attendance should be decreased and there should be reduced avoidable epilepsy deaths.
  • HSC Northern Ireland should support the ongoing establishment of a UK wide clinical network for epilepsy building on existing professional networks. Appropriate support and resources should be provided to support key network functions at national and regional levels. Networks should include links to mental health, education and transition and include input from both multidisciplinary professionals and family / young person engagement.
  • RCPCH, Northern Ireland Executive and HSC Northern Ireland should support the implementation of the Epilepsy12 National Audit Programme to cover trusts and health boards in Northern Ireland, or collect and report comparable data with accompanying action planning and quality improvement.
  • All HSC Trusts should invest in sufficient epilepsy specialist nurses to ensure children and young people are supported across the health and education pathways. Unnecessary acute admissions and emergency department attendance should be decreased and there should be reduced avoidable epilepsy deaths.

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

I felt that all of the people who treated me put me first, and this really helped me to understand that I was the most important thing in the process, not my epilepsy… I am in charge of my life.

Young person speaking with RCPCH &Us

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

Royal College of Paediatrics and Child Health (2020) State of Child Health. London: RCPCH. [Available at: stateofchildhealth.rcpch.ac.uk]

References

(1)

Joint Epilepsy Council of the UK and Ireland. (2011) Epilepsy prevalence, incidence, and other statistics.

(2)

Meeraus WH et al (2013).  Childhood epilepsy recorded in primary care in the UK Arch Dis Child 98:195-202.

(3)

Chen Z et al. (2018). Treatment outcomes in patients with newly diagnosed epilepsy treated with established and new antiepileptic drugs: a 30-year longitudinal cohort study. JAMA Neurology 75:279-286

(4)

Davies S, Heyman I, Goodman R (2003) A population survey of mental health problems in children with epilepsy. Developmental Medicine and Child Neurology 49; 292-5.

(5)

Royal College of Paediatrics and Child Health (2018) Epilepsy 12: National Clinical Audit of Seizures and Epilepsies for Children and Young People. 2018 National Organisational Audit Report. 2018: Healthcare Quality Improvement Partnership.

(6)

Patel AD, Wood EG, Cohen DM. (2017)  Reduced emergency department utilization by patients with epilepsy using QI methodology. Pediatrics, 139 (2) p. e20152358

(7)

Hargreaves DS et al (2019). Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England: a national longitudinal data linkage study. Lancet doi.org/10.1016/S2352-4642(19)30201-9

(8)

Royal College of Paediatrics and Child Health (2018) Epilepsy 12: National Clinical Audit of Seizures and Epilepsies for Children and Young People. 2018 National Organisational Audit Report. 2018: Healthcare Quality Improvement Partnership.

(9)

Kossarova L, Cheung R, Hargreaves D, Keeble E. (2017) Admissions of inequality: Emergency hospital use for children and young people. December 2017: Nuffield Trust.

(10)

The case for investing in children and young people’s epilepsy services. Implement NICE  Clinical Guideline 137

(11)

Royal College of Paediatrics and Child Health (2018) Epilepsy 12: National Clinical Audit of Seizures and Epilepsies for Children and Young People. 2018 National Organisational Audit Report. 2018: Healthcare Quality Improvement Partnership.

(12)

Open UK: Organisation of Paediatric Epilepsy Networks in the UK, RCPCH website resource page

(14)

Young Epilepsy (2019) Epilepsy support in schools: Survey of young people with epilepsy and their parents and carers.

(15)

RCPCH website resource page: Epilepsy Passport

(16)

Young Epilepsy: Individual Healthcare Plan

(18)

RCPCH website resource page: Epilepsy Passport

(19)

Young Epilepsy: Individual Healthcare Plan