Epilepsy care for children and young people has improved but remains inconsistent, according to the latest Epilepsy12 annual report.
The report into paediatric epilepsy care showed wide regional variations of care provision, with the most deprived areas having the highest prevalence and incidence of epilepsy.
According to the report:
• 99% of diagnoses among children and young people were accurate.
• 91% of children and young people received input from a paediatrician with expertise in the first year since diagnosis – an improvement of 2%. But only 21% were seen within two weeks of referral.
• 77% received input from an epilepsy specialist nurse – an improvement of 1%.
• 70% underwent an ECG.
• 79% had comprehensive care plans.
• 37% had individual healthcare plans in schools.
However, the percentage of children and young people who received input from tertiary care providers, were referred for epilepsy surgery or had an MRI, decreased.
“It’s fantastic to see a positive trend in many aspects of epilepsy care for children and young people, from access to specialists to accuracy of diagnosis. However, the figures are also showing massive regional differences in provision, meaning there is still more to be done to achieve the right level of quality of care across the country. This is especially true in the most deprived areas, where prevalence and incidence of epilepsy are highest.
– Alison Fuller – Director of Health Improvement and Influencing
Established in 2009, the ‘National Clinical Audit of Seizures and Epilepsies for Children and Young People (Epilepsy12)’ focuses on holistic and equitable care, care within education and limited improvements in care. This is its fourth auditing round.
“It’s vital children and young people with epilepsy have the support they need at school, too, where they spend so much of their time. While it’s certainly positive the number of pupils with epilepsy having a School Individual Healthcare Plan has increased, it is only two in five who have one currently, when all of them should.”
– Alison Fuller – Director of Health Improvement and Influencing
While epilepsy and mental health conditions are commonly linked, the report said 80% were not being screened for mental health conditions and more than a third of trusts did not have referral pathways for depression, anxiety or mood disorders.
The report also showed an increase in the number of girls aged nine or over taking sodium valproate, which has been linked to risks in pregnancy, but only 86% had those risks explained to them.
No trusts reported having conversations about Sudden Unexpected Death in Epilepsy (SUDEP) with 100% of children and young people. Overall, 56% of children and young people or families had been warned about the risk of SUDEP.
The report echoed findings by Epilepsy Action (among others) earlier this year that the most deprived areas of the UK have the highest prevalence and incidence of epilepsy.
In England and Wales, 28% of children and young people with epilepsy were living in the most deprived areas. In some trusts as many as 58% of children and young people with epilepsy came from deprived areas.
The report recommends that:
• All children and young people with epilepsy should be supported holistically from a network of professionals and services.
• All children and young people with epilepsy should have appropriate access to care irrespective of age, sex, ethnicity, social deprivation status, learning disability, autism or geography.
• Health services should explore with education services ways to improve the number of children and young people having effective ongoing school individual health care plans and education health care plans.
• Coordinated reviews should be carried out to identify barriers, establish enablers and implement improvement plans for those areas of paediatric epilepsy care where Epilepsy12 highlights little or no improvement over time.
“Overall, the report shows significant improvement in some aspects of care for children and young people with epilepsy, but there are still many that require attention and improvement, which is where the focus should be. In particular, giving all children and young people with epilepsy holistic support from a network of professionals, improving access to care for all, and increasing the number of children and young people with effective health care plans within education settings.”
– Alison Fuller – Director of Health Improvement and Influencing