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This article was published in September 2013. The information may be out of date. Please check our epilepsy information or our site A-Z.

New children’s epilepsy report recommends ‘epilepsy passport’

23 Sep 2013

A new report – released today – offers an in-depth analysis of children’s epilepsy care in the UK. While the report shows some improvement, better communication is recommended to avoid risks to a child’s health. Specifically, a new ‘epilepsy passport’ should improve overall care

The report comes from the Clinical Outcome Review Programme, part of Child Health Reviews UK (CHR-UK). This is an initiative from the Royal College of Paediatrics and Child Health (RCPCH). It is designed to fully explore healthcare for children with a view to making improvements.

The new report has explored the epilepsy care of 162 children. This exploration has included 61 in-depth reviews of child deaths and how a child’s epilepsy can affect or be affected by another condition.

The report found that over 85 per cent of the children with epilepsy who had been taken to intensive care or who had died were living with developmental problems. This means that they were being treated for more than one condition – and had more than one medical professional involved in their care. In fact, nearly half of that 85 per cent (44 per cent) are or were being treated by at least three different health professionals.

The CHR-UK report raises concerns about having several healthcare professionals involved in a child’s care. This can make it difficult to keep up communications between professionals so that the child’s care is well coordinated. The report suggests that the ‘bigger picture’ of care may be getting lost.

Young boy in a hospital bed with teddy bearIn an attempt to remedy this, the report recommends an ‘epilepsy passport’. This would be a document that first of all clearly identifies which health professional is responsible for the overall coordination of a child’s care. It would also name each professional involved in that child’s care. The passport would serve as a starting point for better communication not only between medical professionals but also between them and the child’s family.

The report makes interesting reading, with a range of other findings and potential recommendations to improve care. Interestingly, the report found that on 49 per cent (less than half) of the children studied had documented access to an epilepsy specialist nurse.

Simon Wigglesworth, deputy chief executive of Epilepsy Action, said: “This study echoes the findings of previous reports, which have highlighted that epilepsy care for children is still not as joined-up and comprehensive as it should be. It’s unacceptable that half of children with epilepsy have no evidence that an epilepsy specialist nurse or specialist is involved in their care.

“We support the RCPCH’s recommendations for an ‘epilepsy passport’ or other form of ongoing comprehensive care plan for children with epilepsy. We support joined-up care and communication across all parties involved in a child’s care – including parents. It helps healthcare professionals share vital information to improve the long-term management of a child’s health.

“These recommendations are relevant for all children with epilepsy, regardless of any other health conditions they may have. Epilepsy can have a huge effect on family life and can be distressing for the whole family. For some children and young people it can also have an impact on their education, emotions and behaviour. That’s why it’s so important that children and young people get the proper care and support they need from health professionals. We hope these findings will highlight the need for a consistent and joined-up approach to treating children and young people with epilepsy.”

Read the full CHR-UK report.

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