The Royal College of Paediatrics and Child Health (RCPCH) is starting a new review into how effective children’s epilepsy services are. This is known as the Epilepsy12 audit and this is the third review of this kind.
Epilepsy12 is also known as the National Clinical Audit of Seizures and Epilepsies in Children and Young People. It looks at children’s epilepsy services at a particular point in time. It compares the services against 12 standards based on guidance by the National Institute for Health and Care Excellence (NICE).
Epilepsy12 looks at diagnosis and early treatment in children with epilepsy. It assesses things like how long it takes for children to receive services like scans and appointments. It also looks into areas such as how long it takes for a diagnosis to be made and whether children receive support from epilepsy specialist nurses (ESNs).
Epilepsy Action will take part in an initial meeting for the latest review – known as Round 3 of the Epilepsy12 audit – as part of a group of experts. This group will help decide what data should be collected and how, so the audit can assess children’s epilepsy services effectively.
The first two reviews found that there were areas in children’s epilepsy services which needed improvement. These included things like access to ESNs for families, the information they received and working with schools.
In the 2014 report, improvements were seen in some areas, such as more children getting access to ESNs. But it also identified other problems such as a large number of children who did not get referred to the specialist doctor (paediatric neurologist) they needed.
Angie Pullen, epilepsy services manager at Epilepsy Action, said: “Epilepsy12 reviews children referred from their GP along the whole journey of diagnosis and early treatment. This audit gives a measure of the quality of services at a point in time and it tells us whether they’re improving. It’s important to Epilepsy Action to be able to track improvements, as well as areas that need more work.
“But we also think it’s important that families are involved in these audits. Last time we were successful in working to get a patient recorded experience measure (PREM) included in the audit. So, it wasn’t just numerical clinical data but it actually gave parents and children the opportunity to give their views about the quality of the services that they were receiving.”
Round 3 of Epilepsy12 is in its early stages and the initial meeting of the audit took place in April. There is more information into the current Epilepsy12 audit on the RCPCH website.