Epilepsy & Seizures Care pathway
Epilepsy and seizures are the most common neurological reason for emergency presentations at hospital. They represent around 1.5% of emergency admissions nationally, and it is known that there are an equivalent number of Emergency Department (ED) attendances that are discharged without admission. Whilst 1.5% is lower than many of the more high profile conditions (such as heart failure or COPD), many of the seizure admissions are eminently preventable, rather than an expected feature of a declining chronic state, and so there is a huge opportunity to improve care amongst these patients. However, care is poorly coordinated across sectors and organisations.
The first step in understanding the scale of the problem and how patients navigate the healthcare system is to accurately identify the correct cohort of admissions. Whilst there are pre-existing figures available, the vagaries of the coding system mean that these are not always recognised by clinicians as the true case mix. We believe that our method of identification, described below, is currently the most accurate.
Once we have identified the seizures admissions, by combining data from the A&E and outpatient datasets, both before and following the index admission, it is possible to monitor hospital performance and report this back to them as part of a Learning Health System. Moreover, the routine collected hospital data can be used to assess the impact of interventions, such as the Walton Seizure Pathway and the NIHR-funded Care After Presenting with Seizures (CAPS) project and monitoring the effect these interventions have on health inequalities, as outlined below.
Using the geographical data which is present in the data, allows patterns of high referral rates to be identified, and when fed back to local CCGs, we show how this can be used to inform the siting of community outreach clinics. The clinical information held within the data can also be analysed, and we demonstrate how an analysis of CT scans highlights the inadequate coordination in care and leadership, as well as wasted resources and unnecessary radiation exposure to patients.
Our work has been presented and, to varying extents, our methodology has been adopted at a national level by a number of groups including National Neurology Advisory Group, RightCare, Getting It Right First Time, and the NHSE Epilepsy Specialist Commissioning Review.