SUDEP Action

Making every epilepsy death count
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A & E epilepsy

SUDEP action is using funds raised by Kt’s fund to commission a local team of researchers and health managers to influence epilepsy service development in Cornwall.

The project will gather data on two important areas that ought to meet with current NHS priorities to tackle early mortality and unnecessary use of accident and emergency departments. 

The project will:

  • Describe the factors influencing SUDEP deaths across a local population.
  • Describe the factors influencing people attending hospital with a seizure-related emergency. 
  • Engage the interests of commissioners, policy makers and other local stake holders.  The project will produce a report targeted at this local audience that will be added to published academic research papers. 

Estimates suggest 13-18 per cent of people with epilepsy have attended Accident and Emergency (A&E) in the previous 12 months with around 9 per cent having unplanned hospital admissions.  

The UK National Audit of Seizure Management in Hospitals 2012 highlighted a number of key service limitations for patients attending A&E departments with epilepsy in the UK:

  • over half of patients with uncontrolled epilepsy were not being seen within an epilepsy service
  • assessment is often inadequate
  • referral and access to services after presentation is poor. 

We know that emergency epilepsy-related hospitalization is strongly associated with poor epilepsy control, but we need to understand the factors influencing people having to end up at A & E. 

A recent study at King’s college London suggested that that there are a number of potential factors contributing to A&E attendance that could be targeted by service providers.  The study was however confined to an urban population.

Researchers at King’s college, London and Cornwall NHS Trust are collaborating so that a study can take place in Cornwall to mirror the London-based research in a rural UK setting and so that a comparison can be made. Cornwall is one of the poorest areas in the UK or indeed Europe.  On average, earnings are 25 per cent below the UK national average and unemployment levels are amongst the highest in the UK. 

A mixed methodology will be used to collect quantitative data by questionnaire and qualitative data through open free text questions.  Individuals will be asked what led to their attendance at A&E and whether their experience was helpful.  They will also be asked whether they could have been appropriately supported elsewhere. 

Research questions:

  1. What is the pattern of use of A&E (Accident & Emergency) by people with epilepsy in a UK rural setting (Cornwall)? 
  2. What factors are most associated with frequent A&E visits for those with epilepsy in Cornwall? 
  3. What impact does epilepsy have (in relation to stigma and quality of life) for those attending A&E for epilepsy in Cornwall?
  4. How does the data collected in this rural setting compare to data (collected through identical research methods) for an urban population between March 2009 and March 2011? 

The study has been granted ethical approval and the study will take place over the next 12 months.

The research team is led by Dr Shankar.  The work with commissioners is led by Alan Drake, Chair of KANDOO – the voice of people with neurological conditions in Cornwall.   

The project findings will be shared with the local epilepsy commissioning group.  This group brings together organisations working at a local level to improve epilepsy services.