Leading epilepsy charity Epilepsy Action has welcomed the publication of a new report into the care of the 63,000 children and young people with epilepsy in the UK. The report shows that excellence in care is possible but that, worryingly, many children with epilepsy do not get the right care and support.
The Epilepsy12 Audit report, launched today, has been published and led by the Royal College of Paediatrics and Child Health (RCPCH).
- Report for parents [PDF]
The report shows that more than half of children and young people (54 per cent) have not had access to an epilepsy specialist nurse. This is despite NICE and SIGN guidelines saying that all children and young people should have the input of a nurse in their care.
Epilepsy specialist nurses are an important source of support for children and young people and their families. Nurses are involved in care planning, managing risks to the child, liaising with schools and social services and offering advice.
Epilepsy Action is also concerned that, according to the audit, 40 per cent of children who should have seen a paediatric neurologist did not. In addition 35 per cent of children did not have a complete assessment when they were first seen by a children's doctor.
Simon Wigglesworth, deputy chief executive of Epilepsy Action said: “It’s extremely disappointing to see that guidelines designed to improve the care of children and young people are not being widely met. It’s unacceptable that more than half of children and young people with epilepsy have not had the input of an epilepsy specialist nurse.
“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 medical professionals.
“We hope these findings will highlight the need for changes to epilepsy services for children and young people. Health providers and those who commission services should use this information to ensure they improve the consistency of care they provide.”
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.”
For more information about epilepsy and Epilepsy Action, visit www.epilepsy.org.uk
To read the Epilepsy12 Audit report visit www.rcpch.ac.uk