Luton Primary Care Trust (PCT) serves a local catchment population of just under 190,000 people. Approximately 30% of this population is from ethnic minority groups, predominantly South Asian, African-Caribbean, and Eastern European. The estimated number of children and young people (aged 0–19 years) it serves is 50,000.(1)
Almost all children with epilepsy residing in Luton PCT are managed by the epilepsy service at Luton and Dunstable NHS Foundation Trust. Approximately two-thirds of children under the care of the Luton and Dunstable Hospital NHS Foundation Trust epilepsy service reside in Luton PCT.
In 2008, Luton PCT had the highest rate of emergency admissions for epilepsy per 100,000 children in England. (2) Using ChiMat’s Disease Management Information Toolkit (DMIT), the Eastern Region Public Health Observatory compared Luton PCT’s rate with those of other PCTs which had a similar demography and similar levels of deprivation, and found that Luton PCT’s rate of emergency admission was double that of all but one other demographically similar PCT.
At the same time, analysis by Luton and Dunstable Hospital NHS Foundation Trust showed that the number of children presenting with epilepsy as an emergency attendance was almost twice the national average, and was one of the highest of any NHS Trust in the East of England region.
The community specialist epilepsy nurse with responsibility for Luton PCT undertook to investigate the causes of this unexplained variation, with support from the Luton and Dunstable Hospital NHS Foundation Trust children’s epilepsy service. Data on all emergency presentations for epilepsy were collected for one year including information on:
› demographics of the attendances;
› pre-hospital care;
› emergency treatment and further therapy;
› final outcomes of each episode of care.
The results of investigation
Opportunities for intervention were identified at different points along the patient pathway.
Demography: Although children of South Asian origin comprise only 32% of children with epilepsy in Luton PCT, they accounted for 77% of presentations to the Emergency Department.
Pre-hospital care: “Rescue medication” is pre-prescribed emergency anticonvulsant medication that parents can be trained to give safely at home. (3) Rescue medication had not been prescribed for 63% of the children who presented as emergencies; this may have been due to first attendance with prolonged seizure or not considered clinically appropriate previously.
Of those who had pre-prescribed rescue medication available, 25% did not use it, citing lack of confidence about usage – the ethnic background of all these respondents was South Asian.
Treatment and outcomes: Of all attendances, 48% did not require administration of anticonvulsant therapy in the Emergency Department. Despite this, 81% of attendances resulted in full admission to the children’s ward. Further investigation through interviews with ambulance staff revealed a lack of both confidence and formal guidance on assessment of need to transport patients to the Emergency Department following seizure cessation at home.
What action was taken?
Key themes that emerged from this in-depth analysis of local variation formed the basis for targeted intervention with respect to the care of individuals, the healthcare system, and population medicine.
Education of families: There are several possible reasons for the unwarranted variation in pre-hospital care and unplanned presentations in children from South Asian families:
› Language barriers;
› Inadequate health education;
› Cultural perceptions of epilepsy.
As a result, the Specialist Epilepsy Nurse has undertaken a community-based project to improve the quality of healthcare information provision to South Asian families in partnership with Epilepsy Action and The Roald Dahl Marvellous Children’s Charity. The aim of this project is to improve the targeting of information to families, particularly by overcoming linguistic and cultural barriers to improve people’s understanding of epilepsy, in addition to providing detailed advice and support for managing acute episodes at home.
Pre-hospital care: A review was undertaken of all children in the epilepsy service to ensure rescue medication was prescribed where appropriate. Training needs for parents were also reviewed to facilitate administration of rescue medication confidently and safely.
Education of ambulance service for pre-hospital management: A formal education programme has been implemented for local ambulance staff to improve initial assessment of seizures in children.
In addition, local clinicians are working in partnership with ambulance staff to improve support for parental administration of rescue medication in the home.
Education and guidance have also been targeted at ambulance staff:
› to improve out-of-hospital assessment and management of children immediately after a seizure;
› to streamline the attendance of children who require hospital treatment;
› to support the decision-making of families whose children are stable enough to remain at home.
Network care pathways: The Eastern Paediatric Epilepsy Network has developed care plans, clinical guidelines and specific patient information for the East of England region because epilepsy management has implications for the entire network. Uniformity and availability of clinical and parental advice is the first step to reducing unwarranted variations regionally.
A seizure urgent care pathway is being developed collaboratively by Luton and Dunstable Hospital NHS Foundation Trust, Cambridgeshire Community Services NHS Trust paediatric nursing teams and Bedfordshire & Hertfordshire Ambulance Service. This will follow similar pathways developed for other acute conditions, with the aim of informing and supporting healthcare professionals in seizure management across primary and secondary settings.
A prospective survey is currently underway to evaluate the impact of these interventions on emergency admission rates.
Becoming aware that the Trust was a “performance outlier” was the trigger to seek to identify reasons for the variation. Socio-economic deprivation and ethnic demography are often the factors cited to explain the performance of outliers. However, as this case-study shows, in-depth investigation of local practices and populations can reveal areas for improvement in the care pathway irrespective of demography.
Furthermore, the investigation revealed unwarranted variations in care within the population itself. This is important for two reasons:
› Identifying an at-risk population receiving substandard healthcare has implications for equity and quality of overall population health;
› Identifying an “at risk” population in order to target interventions appropriately and cost-effectively.
The work outlined in this case-study was made possible by high-quality, pro-active clinical leadership from the multidisciplinary paediatric epilepsy team, particularly in the community setting. The strength of the network system of care was in providing a platform for collaboration to identify and tackle the causes of unwarranted variation. Local commissioners supported the implementation of local improvement strategies, and continue to support the work of the epilepsy specialist nurse and the community-based multidisciplinary specialist epilepsy team.
The scenario of a deprived local population and poor performance outcomes will be familiar to many local commissioners and clinicians, and addressing any variations in care can seem daunting in this context. Issues of public health and the socio-economic determinants of health may appear to be beyond the control of health services. However, pragmatic and meaningful solutions can be found to tackle seemingly intractable unwarranted variations in child healthcare.
› local clinical leadership;
› collaborative multidisciplinary working;
› the clinical expertise of a network system of care;
› the support of commissioners.
Much of the resource required for this type of project is the time and expertise of a specialist epilepsy nurse, covering data collection as well as planning and implementation of interventions.
It is anticipated that much of the administrative work regarding data collection will be delegated to nonclinical staff for the second iteration of the survey, to allow the specialist epilepsy nurse to devote more time to the planning and implementation of interventions, although responsibility for oversight of data collection and interpretation will be retained. Funding of approximately £6000 was obtained from the two named charities to deliver the education programme.
Further information and resources
› Eastern Paediatric Epilepsy Network care plans and parental information. http://www.networks.nhs.uk/nhs-networks/eastern-paediatric-epilepsynetwork
› ChiMat Disease Management Information Toolkit (DMIT). http://www.chimat.org.uk/default.aspx?QN=CHMTDMIT
This case-study is based on the work led by:
› Liz Stevens, Specialist Paediatric Nurse, Cambridgeshire Community Services NHS Trust;
› Julia Yelloly, ChiMat Local Specialist, Eastern Region Public Health Observatory.
1. ONS, 2008.
2. For reference, see also Atlas 1.0, Map 10 Directly standardised rate of emergency admissions in persons with epilepsy per 100,000 population by PCT 2006/07–2008/09.
3. NICE (2012) The epilepsies. The diagnosis and management