2002: How we took epilepsy deaths out of the shadows

Twenty-three years ago, SUDEP Action – then known as Epilepsy Bereaved – secured Government funding for the first ever national inquiry into epilepsy deaths. The charity became the first organisation from the voluntary sector to lead a national clinical audit.

The National Sentinel Clinical Audit – Epilepsy Deaths in the Shadows  was commissioned with a specific aim: to establish whether deficiencies in the standard of clinical management of epilepsy or in the overall healthcare package could have contributed to deaths. There had been five Government reports on epilepsy over the previous 50 years, which had found serious deficiencies in epilepsy services, yet resulted in little change. It took Epilepsy Bereaved – working with pioneering researchers and clinicians – to convene the first international workshop on SUDEP in London in 1996.  The National Audit of Epilepsy Deaths brought together a partnership of experts from five Royal Colleges. Their inquiry produced the report the landmark report, ‘Death in the Shadows’, which found that around 40% of SUDEP deaths were avoidable. An editorial by Professor Hauser (US) and Professor Pedley (US) in The Lancet called the report’s findings ‘a wake-up call to epilepsy management around the world.

Still widely cited and used today, the National Sentinel Clinical Audit of Epilepsy-Related Deaths found stark and systemwide failures in the provision of epilepsy care, including:

• Medical records were generally poor. In primary-care settings, information related to epilepsy was incomplete or absent, and the situation was only slightly better in specialty settings.
• Therapeutic management was deficient, particularly for children.
• Referral times to a specialist could take longer than six months and less than half of patients received an initial referral to a neurologist. For patients with multiple problems, referral to other specialists was rare.
• Even though only a few of the patients who died (none of them children) were seizure-free at the time of their last visit to a clinician, 7% were not taking antiseizure drugs at the time of death and there were significant issues across the board about medicines management.
• Follow-ups were inconsistent, 37% of the adults who continued to have seizures had not seen a clinician in the year before they died.
• Only 1% of the people who died had any record that included reference to epilepsy as a life-threatening condition.
• Postmortem examinations were not performed when the circumstances of death should have mandated one before a certificate was issued.
• Most (87%) of autopsy investigations were inadequate given the suspected diagnosis.
• Only a few families were contacted by a clinician following a death.

Stephen Twigg, then Parliamentary Secretary at the Privy Council Office, had cause to champion the report’s findings in Westminster because his mother had died from epilepsy ten years before. He attended the report launch and said: “I realised after she died how little we knew about this disease. It’s vital we make serious progress so the number of deaths can be significantly reduced, and other families won’t have to live with the same experience.”

The Times ran a report that ‘hundreds of young people in Britain were needlessly dying from epilepsy every year because of failures in the treatment of the condition’. There was other notable press across Scotland, Wales, Northern Ireland and internationally.

Baroness Gould, who led the Parliamentary debate, said: “The audit addressed questions and issues that had in the past been felt to be too sensitive to ask. The audit has brought epilepsy out of the shadows.” 

Lord Howe commented:  “On one level, those findings should appal us. However, on another, the fact that these weaknesses in clinical services have been highlighted by the audit is something we should be grateful for. Perhaps the most dismaying disconnect is between doctor and patient—the failure by doctors to discuss with the patient the risks of epilepsy and how to minimise them. I am sorry to say that this part of the report spoke to me of a basic lack of willingness on the part of doctors to involve patients in decisions about their own care and a ducking out of confronting unpleasant truths.”

Sir Liam Donaldson, then Chief Medical Officer, pledged to develop an action plan to reduce levels of preventable deaths within three months.  Sir Liam issued a statement following the publication of the report in which he thanked Epilepsy Bereaved for ‘presenting such a carefully executed and significant piece of work.’

Jane Hanna OBE, SUDEP Action’s Director of Policy & Influencing, led the National Audit. Reflecting, two decades on, Jane said: “There was no doubt that the 2000s was a decade in which we felt an ongoing state of concern for the protection of life and for raising epilepsy awareness. Regarding the most important change of breaking the silence on SUDEP,  the new national guideline was now clear that good practice was to speak to patients at risk of SUDEP about SUDEP.”

By 2013, with government cutting annual reviews for people with epilepsy, SUDEP Action was ready with a programme of research and action aimed at bringing tailored and life-saving knowledge to the fingertips of both health professionals and patients to aid communications. 

Jane added: “Our Safety tools are more vital than ever in 2025, if a person is struggling to be seen by their clinician or to access medicines and treatments supporting patient and clinical advocacy. The other crucial legacy is that every day SUDEP Action continues to help suddenly bereaved families make deaths count by ensuring epilepsy is not ignored by pathologists or coroners or Fatal Accident Inquiries.  We cannot do that without the pathology guidance on consideration of SUDEP or indeed the clinical guidance signposting to our specialist support.”

Read more:  

(PDF) The Annual Report of the Chief Medical Officer of the Department of Health 2001

Epilepsy – Hansard – UK Parliament

(PDF) Sudden unexpected death in epilepsy (SUDEP): Don’t ask, don’t tell?