Variation in care for children with epilepsy revealed in first UK-wide audit

About 1 in 200 children in the UK are affected by epilepsy – yet the standard of care they receive remains variable, according to the results of the UK’s first national audit of epilepsy care for children and young people.

Led by the Royal College of Paediatrics and Child Health (RCPCH) and funded by the Health Quality Improvement Partnership (HQIP) and Healthcare Improvement Scotland (HIS), the Epilepsy12 Audit report, launched today, examines the provision of healthcare for children with suspected epileptic seizures against 12 standard measures.

The audit was largely undertaken by local paediatricians and nurses keen to find ways to continue improving the services they provide – and 98% of children’s NHS Service took part. The audit found significant variation in the quality of care for children with epilepsy and their families, with some encouraging figures, including:

  • 79% of children with epilepsy saw a paediatrician with specialist training in childhood epilepsy
  • 87% had their seizure type appropriately classified - important  in determining the best form of treatment
  • 95% were given carbamazepine appropriately – a medicine for controlling epilepsy

However, the audit also found:

  • Only 46% of children saw an epilepsy specialist nurse – against a recommendation that all children have access to one
  • 40% of children did not see a paediatric neurologist where required
  • 65% of children had an appropriate first assessment; 35% did not have a complete first assessment

Paediatrician and Project Lead for the Epilepsy12 Audit Dr Colin Dunkley, said:


'We’ve seen marked steps forward in epilepsy care for children in recent years; the majority of children are now being seen by paediatricians with expertise and many are getting detailed diagnoses and being prescribed the most appropriate medicines first time.

'But there are certain areas that need to be improved if we’re to give children and young people the best possible medical treatment and ongoing care to help manage their epilepsy and maximise their learning and quality of life.'
 

It is known that misdiagnosis in epilepsy is costly to the NHS and also means that children are exposed to unnecessary epilepsy drugs. About 50% of children with epilepsy do not achieve at school as they should. There is also evidence that there are some children who may benefit from epilepsy surgery who are not being identified.

The Epilepsy12 project group, comprising clinical experts and representatives from leading charities Epilepsy Action, Epilepsy Scotland and Young Epilepsy, is calling for improvements in a number of areas, including:

  • All services managing children with epilepsies should ensure that they have easy access to at least one consultant paediatrician with defined ‘expertise in epilepsies’
  • All children diagnosed with epilepsy should have specialist nurse input offered in line with NICE and SIGN guidance
  • Particular efforts should be made to ensure timely and ongoing assessments of development, educational, emotional and behavioural problems for all children with epilepsies

A survey of parents, carers and young people, also included as part of today’s report, found that 78% of parent/carers and 82% of children and young people, were satisfied with the care received from their epilepsy service – but a quarter of young people found the information they were given difficult to understand.  Respondents suggested improvements such as better information in schools, reducing waiting times and involving children and young people when designing services as key to raising the standard of epilepsy services.

Dr Dunkley continued:
 

'By identifying where things are working well and where they’re not – and by getting a real sense from doctors, nurses, patients and their families of what makes a good epilepsy service – we can continue to drive up standards of care and measure improvements. 

'This audit is designed to help health providers and commissioners to measure and improve the quality of care and information that’s provided for children and young people living with epilepsy.  Ultimately, what we want to see is better outcomes for children with epilepsy and that is why we have asked all local services to prepare action plans in the light of the audit findings.'
 

Ends.

DOWNLOAD THE FULL REPORT (pdf)

DOWNLOAD THE REPORT FOR PARENTS

The Epilepsy12 website (www.rcpch.ac.uk/epilepsy12) provides a quality improvement toolkit of useful resources to support audit units to implement and share effective action plans.

The RCPCH is also undertaking a themed review of cases of mortality and morbidity in children and young people with epilepsy, at all stages of the care pathway including primary and emergency care. This is part of the Clinical Outcome Review Programme: Child Health Reviews-UK. For more information see: http://www.rcpch.ac.uk/chr-uk
 

About HQIP


The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote quality improvement, and in particular to increase the impact that clinical audit has on healthcare quality in England and Wales.  HQIP hosts the contract to manage and develop the National Clinical Audit and Patient Outcomes Programme (NCAPOP). Their purpose is to engage clinicians across England and Wales in systematic evaluation of their clinical practice against standards and to support and encourage improvement in the quality of treatment and care. The programme comprises more than 30 clinical audits that cover care provided to people with a wide range of medical, surgical and mental health conditions.

 About the audit

  • In 2009, the Healthcare Quality Improvement Partnership (HQIP) and Health Improvement Scotland (HIS) funded the Royal College of Paediatrics and Child Health (RCPCH) to establish Epilepsy12 - the United Kingdom collaborative clinical audit of health care for children and young people with suspected epileptic seizures.  This follows 2002 and 2003 inquiries which led to widespread concern about the quality of services for children with epilepsy.
  • ‘Epilepsy 12’ audit is the first ever UK wide national audit of epilepsy care for children and young people.  The audit critically examines the provision of health care for children and young people with suspected epileptic seizures, against 12 standard measures, in the first 12 months following presentation to district level health services.
  • All paediatric services that employ National Health Service (NHS) paediatricians for children and young people with seizures or epilepsy were invited to participate. 
  • Local epilepsy services across the UK took part.
  • Parents/carers and young people with epilepsy  also completed questionnaires.
  • Level of engagement in the audit has been high with 94% of eligible services providing clinical data.
  • Round one is now completed.  Round two will begin in October 2012 with data collection early 2013.