Epilepsy is the most common long term neurological condition of childhood affecting an estimated 112,000 children and young people (CYP) in the UK. Not only does epilepsy have an impact on a person’s physical and mental health but it can also affect their social lives, education, and employment.
To address this gap NHS England commissioned the Health Economics Unit (HEU) to undertake an assessment of the specialist workforce on CYP with epilepsy to understand whether better access to the workforce improves the quality and delivery of clinical care for CYP with epilepsy. The specialist workforce includes epilepsy specialist nurses, paediatric neurologists, and consultant paediatricians with expertise in epilepsy.
Blending engagement and literature reviews to build a picture of care
The HEU first set out to identify important areas of the care pathway that may offer additional benefit to the care of CYP with epilepsy, particularly the involvement of the specialist workforce, through stakeholder workshops.
The team organised two workshops (in December 2023 and January 2024), with participants including health professionals from NHS England and the NHS Trusts, including representatives from the specialist workforce and epilepsy charities.
To further understand the landscape using published evidence, the HEU conducted a literature review to identify patient outcomes and resource use/activity and the effect of a specialist workforce on these outcomes. These included emergency department attendances, inpatient admissions, seizure frequency and severity, and quality of life.
A PICO (Population, Intervention, Control, Outcomes) approach was used and a systematic search of Medline and Embase (from 2013 to December 2023) was undertaken. Only English language studies and studies relevant to England and Wales were included. The team also analysed Epilepsy12 audit data (www.rcpch.ac.uk/epilepsy12).
Several types of analyses were undertaken: a descriptive analysis of clinical and organisational data, an advanced analysis looking at the relationship between the specialist workforce and clinical care measures, and a comparative analysis of staff spend.
Building an evidenced picture of epilepsy care
From analyses of the data, searching the literature, and discussions with the stakeholders (logic model) we were able to draw out the many ways in which specialist staff add value and influence a wide range of resource use and clinical, patient, and economic outcomes.
The HEU found evidence that epilepsy specialist nurses (ESNs) may generate cost savings for the NHS. CYP with access to an ESN are more likely to have evidence of care planning activities, medications provided, and clinical reviews in the previous 12 months than those who do not. ESN-led interventions may also result in fewer emergency department visits.
Furthermore, our research shows that CYP with epilepsy who have access to a consultant paediatrician with ‘expertise in epilepsy’ compared to those who do not, were more likely to have a clinical review by a consultant paediatrician or paediatric neurologist and have evidence of care planning activity, epilepsy medications provided, and formal cognitive assessment.
Stakeholders commented that the level and mix of specialist staff can:
1) affect the care and treatment of CYP with epilepsy and
2) impact health care system resource use and efficiency.
Rescue medication training (from ESNs), specialist clinics, home visits, and supporting care planning were all seen as key activities of the specialist workforce.
Finally, there are clear shortages of specialist staff across England and Wales which needs addressing.
Opportunities for future research
The HEU recommends further research to discern the optimal mix of the specialist workforce and how better access translates into other important outcomes, such as, improved self-management of epilepsy, mental health diagnoses and treatment, and wider resource use in the health system.