The latest figures from the Royal College of Paediatrics and Child Health (RCPCH) show that epilepsy care for children is improving, but access to services still varies greatly.
RCPCH published its annual Epilepsy12 audit report on 13 July 2023. It highlights services and staffing in children’s epilepsy clinics across England and Wales, as well as information on the experiences of newly diagnosed children with epilepsy. Young Epilepsy works closely with RCPCH on the Epilepsy12 audit and our Director of Health and Research (Rosemarie Pardington) is a member of the project board.
Epilepsy professionals
The report shows that more children and young people with epilepsy are benefiting from access to epilepsy specialist nurses and consultant doctors with expertise in epilepsy. However, 1 in 3 children with epilepsy (33%) did not have contact with an epilepsy specialist nurse in their first year of care.
Complex epilepsy
Children with complex epilepsy are still struggling to access specialist support, including referrals to consider surgery. Only 52% of children who should have been referred to paediatric neurology were able to access that specialist support. Only 1 in 3 children (33%) who may have benefited from surgery were referred to consider this treatment option.
Mental health
Although very few children’s epilepsy clinics provide mental health checks and support, Epilepsy12 shows some small improvements in this area. 19% of health boards and trusts now include mental health support in their epilepsy clinics (up from 18% and 15% in preceding years) and 20% formally screen for mental health conditions (up from 17% in the previous two years).
Transition
More young people with epilepsy are also benefiting from both adult and paediatric epilepsy nurses being involved in their transition to adult healthcare. This year’s report show that this happened in 66% of boards and trusts, compared with 63% in the previous two years.
Education
The Epilepsy12 findings show that communication and collaboration between healthcare and education is still a challenge. Medical teams reported that only 37% of school-aged children with epilepsy had evidence of a school Individual Healthcare Plan (IHP) in their first year of care. Young Epilepsy’s figures show that around 56% of children with epilepsy at school have an IHP setting out information about their condition and the support they need to be safe and included at school.
Mark Devlin, Chief Executive of Young Epilepsy, said:
“Epilepsy12 continues to help us understand how healthcare services are supporting children and young people with epilepsy. It’s great to see progress being made in many areas, but we’re still concerned that children do not have equitable access to services across the country. We’re working closely with the NHS to move to a position where all children with epilepsy get the support they need, when they need it.”
Find out more about the latest Epilepsy12 results: Epilepsy12 - national organisational audit and clinical audit - 2023 | RCPCH
