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New report: Disorganised A&E system isn't working


Above: Left to right, Jane Hanna OBE, Dr Judy Shakespeare, Dr Paul Morrish. 

SUDEP Action is calling for a national release of funding  for local systems – prioritising epilepsy as a health inequality – following this week’s shocking NCEPOD report into A&E care for those with epilepsy.  The report highlights a disorganised system that is not working for people facing a life-threatening emergency who end up in A&E.

The National Confidential Enquiry into Patient Outcome & Death (NCEPOD) published its ‘Disordered Activity?’ report today, December 8. Using data from 610 clinical questionnaires, 264 sets of case notes and 158 organisational questionnaires, the report assessed the quality of care provided to adult patients with a pre-existing epilepsy disorder or who were subsequently diagnosed with epilepsy & presented to hospital following a seizure, between 1 Jan and 31 Dec 2020.

The NCEPOD report ‘identified that action could be taken at all points of the patient pathway to improve the quality of care’. It found:

  • Only 13% of patients had any record of being told about SUDEP and epilepsy risk.
  • 42% of patients did not have their admission discussed with their usual secondary care team.
  • 26% of patients did not have their anti-seizure medication written in their notes.
  • 23% of patients should have had additional investigations in the Emergency Dept.
  • Only 7% of patients were reviewed by an epilepsy specialist nurse.
  • 43.5% had no input on their epilepsy management with a neurologist.
  • Neurology input was ‘inadequate’ for 28% of patients.
  • 20% of discharge letters were poor.
  • Only 27% of hospitals reported the waiting time for first seizure clinics to be within two weeks following a first seizure.
  • Follow up was less likely to be arranged prior to discharge if the ongoing epilepsy care was led solely by a GP (19%) compared to secondary care teams (77%).


SUDEP Action CEO Jane Hanna OBE, who led the National Audit into Epilepsy Deaths in 2002 and has been involved in five national reports since, said: “Decades have gone by ignoring vital prevention work in the community and in hospitals. The systemic issues identified in this latest report clearly mark people with epilepsy as suffering serious health inequality. We know from research that these A&E visits are associated with sudden death at home.  Communicating epilepsy risk and managing it has to be the priority for epilepsy care if  A&E and deaths are to be tackled. We know what good looks like, have safety tools to support and we know at least one integrated care system (ICS) that is including epilepsy, but most won’t unless funding is released nationally to local systems to enable local commissioning.”

Dr Judy Shakespeare, a trustee of SUDEP Action, added: “There is a total failure to recognise that epilepsy is a chronic disease that needs ongoing care. If it were heart disease or cancer this would be a national scandal. A whole system approach supporting primary care and focused on workforce hasn’t happened yet, but must, if we are to have a safe care for people with epilepsy.”

The NCEPOD report is the latest of at least six stark national reports since the National Audit of Epilepsy Deaths (led by SUDEP Action) found systemic failure in 2002.

SUDEP Action expert advisors, who fought for this inquiry and advised through the pandemic in an open letter to government and the NHS, are now calling for assurance that there will be a national release of funding for local systems that have prioritised epilepsy as a health inequality so prevention work can start, with urgent plans to tackle gaps in workforce and training.  

The NCEPOD study was proposed by Dr Paul Morrish, Consultant Neurologist, Great Western Hospitals NHS Foundation Trust. Dr Morrish, who also co-authored a Public Health England report in 2018 which found rising deaths in people with epilepsy, said: “These are complex and vulnerable patients needing specialist and multidisciplinary care.  Epilepsy is closely related to deprivation and its prevalence is increasing.  Admission to hospital is difficult for the patient and expensive for the NHS, a sign of failing care and impending catastrophe, but it also provides an opportunity for effective intervention.  Sadly, many of these patients will reattend and some will die.  This report is telling us that we urgently need to prioritise and improve their care.”

Read the NCEPOD report here