Findings from Round 2 of the Epilepsy12 national audit of epilepsy care for children and young people reveal some significant improvements including the number of Children's Epilepsy Specialist Nurses and the number of Specialist Epilepsy Clinics and transition services, but concerns remain about the gaps and variations in care across geographical regions.
Prompted by the British Paediatric Neurology Association (BPNA), led by the Royal College of Paediatrics and Child Health (RCPCH), the National Report of Round 2 of the Epilepsy12 Audit, launched 26 November, examines the change in provision of healthcare for children and young people with suspected epileptic seizures against 12 indicators. The audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and Healthcare Improvement Scotland (HIS) and forms part of the National Clinical Audit Programme*.
The audit, which is the single largest assessment of children and young people's epilepsy care in the UK, shows improvements from Round 1 of Epilepsy12 , conducted in 2012, in a number of areas, including:
- More than two thirds (68%) of units report having a local children's Epilepsy Specialist Nurse (ESN), compared to just over half (53%) in the first audit
- More children newly diagnosed with epilepsy received input from a paediatrician with expertise in epilepsy (87% in this audit compared to 79% in the first audit)
- There has been a significant expansion in epilepsy clinics, with 2 in every 3 units (66%) reporting the availability of a weekly clinic, compared to 58% in the previous audit
The Epilepsy12 project group, comprising clinical experts and representatives from leading charities Epilepsy Action, Epilepsy Scotland and Young Epilepsy, says that whilst improvements are notable, there is much more to be done to make sure progress is maintained and required standards become universal.
The report makes a number of recommendations, including:
- All services managing children with epilepsies should ensure that they have at least one consultant paediatrician properly trained in epilepsy
- The 60 remaining services without an Epilepsy Specialist Nurse (ESN) should urgently create new posts to provide essential care
- Better access is needed to paediatric neurologists for children with more complex epilepsy
Mum of two, Sarah Hedges from Dorchester, is supporting the findings of the report and the call for more paediatric epilepsy specialist nurses across the UK.
Sarah's daughter Eleanor, 8, began having seizures from birth and was diagnosed with epilepsy when she was one. Her seizures are difficult to control and can be severe. Eleanor does have access to an epilepsy specialist nurse but not locally, and the family has to travel for two hours if they want to see her. Sarah feels that this is too far and that Eleanor would benefit from being able to access a nurse closer to home.
"Eleanor's epilepsy is complex and severe. It's a scary condition to deal with at times and Eleanor has been in intensive care twice as a result of her seizures.
"We do have access to specialist health professionals, including a nurse, but not nearby. When we have questions or concerns about Eleanor, her seizures, or medication we contact our nurse by telephone or email. Our nurse is a great help but if we needed to see her we would have to travel to Southampton. This can be difficult, especially as Eleanor's seizures are unpredictable.
"We really value the advice and support our nurse gives us but it would be so much easier to have someone to turn to locally. Naturally, we worry about Eleanor and we really need the support of specialist health professionals close to home who understand her epilepsy and the impact it has on her life."
Paediatrician and Project Lead for the Epilepsy12 Audit, Dr Colin Dunkley, said:
"There have been welcome improvements in epilepsy care. Children and young people are seeing a more expert team, being diagnosed more accurately, avoiding incorrect treatment and there are more services being designed around their specific needs.
"But we cannot become complacent. There is still a long way to go before we can be certain that all children and their families are getting the care they need. Although on some measures some units are performing well, many services need help to improve further. What's crucial now is to ensure best practice is more widely implemented so that all children and young people can benefit from recommended care."
The report also includes the results of a survey of the views of parents/carers of over 2,000 children and young people, who had received epilepsy care in units across the UK, along with the views of the children and young people themselves wherever this was possible. The survey showed that:
- 88% said they were satisfied with the overall care they receive from their epilepsy service
- 20% of parents/carers said staff are not good at working together with others e.g. GP, school or nursery
- 62% of children and young people asked felt there weren't appropriate activities for their age in the waiting area
- 37% said the information they were given was hard to understand
Dr Dunkley added:
"The fact we've seen improvements over 2 years demonstrates the value of the audit, in reporting on what is working well, what isn't, and sharing best practice. It is also proof that by working together with colleagues across the healthcare profession and with families, real improvements in the quality of care can be made."