Lack of consistently good care persists and NICE guidelines are not being met
Around one third of patients in epilepsy care units report not having a local children’s Epilepsy Specialist Nurse
One in every three epilepsy care units report the lack of a weekly clinic.
13% of children newly diagnosed with epilepsy do not receive input from a paediatrician with expertise in epilepsy.
Young Epilepsy has contributed to a new report, out today (26 November 2014), which reveals that children and young people living with epilepsy are missing out on the best treatment in many parts of the country.
One third of children and young people do not have access to a local Epilepsy Specialist Nurse. Another third of these young patients do not even have a weekly clinic to attend that would provide the care they desperately need. The support that nurses and these clinics can give these young people and their families is invaluable and it is unacceptable that some young patients are missing out.
The report identifies starkly varying levels of care throughout the UK , revealing a postcode lottery which means many families are missing out. The effects of a lack of epilepsy care on a child are disastrous and can cause educational and behavioural damage.
John Cowman, Director of Operations at Young Epilepsy, said: “Although there have been improvements to epilepsy care across the UK, it is not good enough yet. Epilepsy is a neurological condition that twice as common as Type 1 diabetes in children but gets pushed to the back of the queue time and time again.
“The Epilepsy12 report highlights the significant gap between the NICE guidelines and the real life experience of many in their day to day lives. Young Epilepsy is working tirelessly to fill these gaps and therefore creating better futures for young people who are living with the condition. We will not be happy until this report shows 100% consistent care for all young people with epilepsy across the UK.”
Young Epilepsy, through a Darzi Fellow, is now working to establish a network approach to bridging the gaps demonstrated by this audit.