Early days
Epilepsy Bereaved began as a campaign by five women Catherine Brookes, Jane Hanna, Sheila Pring, Sue Kelk and Jennifer Preston. Jennifer’s son William died in 1988 (aged 22); Jane’s partner and Sheila’s son Alan died in 1990 (aged 27); Catherine’s son Matthew died in 1991 (aged 21) and Sue’s daughter Natalie died in 1992 (aged 22). William, Alan, Matthew and Natalie were all young and active people who died suddenly and unexpectedly. Neither pathologists nor coroners were able adequately to explain why or how they had died. Their families were searching for answers to the question. Why did they die? All thought they were completely alone.
The media was the only means of breaking the isolation of bereaved families in the early years of the campaign. An article written by Jane appeared in the Independent and the Guardian, and Jennifer and Sue then got in touch, as did others.
Jane spoke on the BBC Watchdog programme about Alan dying from epilepsy. Catherine saw the programme and both met and pledged to get a group to campaign for a better understanding and prevention of SUDEP. At this point even many epilepsy specialists did not know or recognise SUDEP, or if they did they didn’t talk about it.
In 1995 the families created Epilepsy Bereaved to support families bereaved through epilepsy related death, and to campaign for a better understanding and prevention of SUDEP. The charity set in place a system for bereavement support where bereaved families could make contact with other people who had experience of SUDEP. This helped break the sense of isolation and also provided opportunities to assist the work of the charity.
The work of Epilepsy Bereaved was controversial. In the early 1990’s the subject of SUDEP was not being addressed except by a hand-full of clinicians and researchers. A combination of bereaved families and dedicated researchers made a campaign possible.
Our campaigning
In 1996 Epilepsy Bereaved with the support of an educational grant from Glaxo convened a workshop of international epilepsy experts and bereaved families who were concerned about sudden death and epilepsy. The workshop produced a series of published papers on SUDEP and led to increased research activity on SUDEP including important new studies highlighting optimum seizure control as a key preventative measure. The workshop also produced the call for a national confidential enquiry to establish what proportion of epilepsy deaths was potentially avoidable.
A lobby was led by Epilepsy Bereaved between 1997 and 1999 to influence policy makers in England, Northern Ireland, Scotland and Wales. The campaign involved petitions signed by 600 health professionals as well as 9,000 members of the public; written questions; an epilepsy debate in parliament and meetings with ministers and civil servants.
Government commented that the most effective part of the campaign was the involvement of bereaved families. The families had written, and in some cases met with their local politicians.
Most significantly, one bereaved mother met with her local MP Stephen Twigg, whose mother had died from epilepsy and who subsequently led a debate in Parliament on epilepsy and sudden death. Steven Twigg MP became the leader of the All Party Group of MPs for the Westminster legislature which continued to support the campaign.
Epilepsy Bereaved became the first voluntary sector organisation to lead a national clinical audit. Key questions about SUDEP previously and thought too sensitive were raised. A key finding of the Audit was the significant potential for avoidance of premature deaths (about 40% of deaths). The Audit also found that the investigation of epilepsy-related deaths was poor, and this hampered progress in learning from the deaths. Learning how to reduce the high mortality rate was crucial. The Audit was welcomed in 2002 by all four chief medical officers in the UK as a `landmark report’, and was summarised in the Lancet as a `wake-up call’ to epilepsy management around the world.
In 2004, as a result of the Audit, SUDEP is recognised as a syndrome by national and local policy makers. SUDEP has been highlighted in health professional journals and in the NICE (England and Wales) and SIGN (Scotland) epilepsy guidelines on best practice for health professionals. New guidelines on the investigation of epilepsy deaths have been produced by the Royal College of Pathologists. Epilepsy has a higher profile on the health agenda and is now part of the new GP contract.
What’s happening now?
It is not enough to have national guidelines about best practice in epilepsy management, if work is not done to ensure that the recommendations are actually implemented. In 2008 the Audit led in Wales to the first ever commissioning directive for epilepsy requiring health boards to work towards and report on improvements in epilepsy services. In England, the Government produced an Action Plan in 2003 and since then active members within Epilepsy Bereaved worked hard to influence this being put into practice in their local communities. In Scotland all but two Health Boards have agreed to create dedicated epilepsy services.
In 2008, the number of reported deaths from epilepsy has increased to 1,200 in the UK and this is most likely due to the improved awareness of epilepsy deaths in the last 10 years. Research has also identified that clinicians are still reluctant to discuss risks of SUDEP with people with epilepsy and their families. We also know that in many areas of the country, improvements to epilepsy services have not been seen on the ground.
It is therefore vital that we look again at why epilepsy deaths are happening and again at whether opportunities are being missed to avoid deaths. In 2008, the charity is collaborating with senior clinicians and researchers at King’s College, London to establish a SUDEP research initiative. People making contact with the Contact Line are invited to provide information to the research team so that vital lessons can be learnt in the prevention of deaths. We hope to get funding for research into a national register of deaths as well as research aimed at producing a resource for health professionals on how best to communicate about risks. It is also important that we recognise the impact of SUDEP on the family and how the needs of people affected by SUDEP can be met.
There has been much progress. Bereaved families are more likely to be informed about Epilepsy Bereaved immediately after epilepsy related death. Families can access information about SUDEP and other epilepsy related deaths and are directed to our family support team. But our families are acutely aware that change is not fast enough and there is still so much to do.
