UK: looking ahead
[Part 4: Action; Hanna J & Leach J-P]
Epilepsy mortality, including SUDEP, has long been ignored and under-recognised, leaving bereaved families unsupported, isolated and bewildered. However, in the last two decades the UK has begun to benefit from local, national and global initiatives addressing the issue.
Action to break the taboo of discussing epilepsy deaths was led in the UK by five women who founded SUDEP Action (the working name for Epilepsy Bereaved). Following the sudden deaths of partners and children, they established services for bereaved families and convened an international researchers’ workshop in London (Nashef, 1997). A government-funded national investigation into epilepsy-related deaths was also established. The view that seizures are benign still persists in some places, but in the UK policy-makers, clinicians specialising in neurology, pathologists, and coroners are now well informed about epilepsy-related mortality.
The UK-led activities began a global conversation on definition, risks, causes, information and advocacy (Nashef, 1997). Partnerships and collaborations were formed, which produced knowledge and change. A working relationship developed between Epilepsy Australia and SUDEP Action, and later with SUDEP Aware, to make knowledge of what was happening accessible to the world via the SUDEP: Global Conversation project (previous editions available as Past Conversations, 2005 & 2011). Over 20 years there has been a seismic change in thinking, not only in the UK, but world-wide. Marked by national and international honours awarded to one of the co-founders of SUDEP Action, nevertheless, the achievements resulted from the work of a large team of committed people across research and advocacy.
In the UK, a precautionary approach to prevention of all epilepsy-related deaths has informed strategy since the late 1990’s. By 1998 the evidence became clear that the main risk factor for SUDEP was active convulsive seizures (Nilsson et al., 1999) making tackling convulsive episodes a prime aim of epilepsy management. Five medical colleges representing clinicians across the UK; the ILAE (British Branch) and the Joint Epilepsy Council partnered with SUDEP Action. The 2002 SUDEP Action-led-National Sentinel Audit concluded that in up to 39% of adult deaths and 59% of children's deaths there were unexplored therapeutic options to improve seizure control (Hanna et al., 2002). A Lancet editorial and news coverage in the London and New York Times described this as a ‘wake-up call’ and a ‘call to action’ (Pedley & Hauser, 2002).
There have been numerous reports; population-based research and reviews recommending interventions aimed at reducing risk since 2002 (CMACE, 2011; Ridsdale et al., 2011; RCPCH, 2013; Hanna et al 2014; Shankar et al., 2014; Smithson et al., 2014).
Clinical practices at an individual and clinic level have indeed responded and the impact of local champions should not be underestimated. In the South-West, a partnership of SUDEP Action with Kt’s Fund, local researchers, local clinicians, and a coroner, has helped drive and inform the introduction of tools which have been adopted locally by General Practice to outreach and engage with people at risk (Shankar, GC2014; Brown, GC2014). In South Wales, in addition to patient counselling, the medical team has introduced a process for clinical reviews of all deaths (Johnston & Smith, GC2014).
Attempts at UK-wide and national level change have had some success, but are patchy in implementation. Clinical Guidelines across the four Home nations (NICE, 2004/2012 and SIGN, 2003 and forthcoming 2015) have included the need to reduce risk and discuss epilepsy-related mortality.
UK-wide procedures for reporting epilepsy-related deaths were introduced in 2003, as part of a Government Action Plan responding to the National Audit (RCPath, 2005). Data suggests that reported deaths have risen over the last twenty years (Ridsdale et al., 2011). Whilst we cannot be sure, this is most likely to reflect improved awareness and reporting of epilepsy-related deaths.
Looking ahead, the main challenge is whether a systematic approach to implementing change is achievable. In the UK this should be possible as the NHS remains the prime source of health care. The increasing use by policy makers of statistics recognising premature death through years of lost life has been helpful in drawing attention to a more appropriate understanding of the public health burden of epilepsy mortality rather than overall numbers of deaths (Wheller et al., 2007).
The research database in general practice has the potential to monitor avoidable mortality. A large population study commissioned by SUDEP Action has found it provides important flags to general practice, of at-risk patients. There is a now a need for a community-based risk management tool to support general physicians in stepping-up care (Ridsdale et al., 2011).
Translating scientific advance into clinical prevention has been hampered by lack of investment. Initiatives that may help focus funding bodies on this area: the ERUK workshop on SUDEP (London 2014; forthcoming Epilepsia publication); a review of epilepsy-related deaths (Ostler et al., 2014) and a 'Statement of Research Need' signed by researchers across the UK should ensure funders are better informed of the need for translational research, as well as strengthening the evidence-base on a wide range of questions.
Policy, education and communication
Information acquired since the 1990s is now flowing through to professional education on mortality and SUDEP at professional conferences and gatherings for people with epilepsy and their families.
Collaborating with our sister organisation, SUDEP Aware, has allowed resources to be adapted for both the UK and North American audience. SUDEP Action works with many professional and patient organisations to provide training and information, as well as support for families affected by a death. We remain committed to raising awareness amongst audiences in and outside of the epilepsy community, keeping them up to date with the accelerating evidence.
In England, SUDEP Action is part of a collaboration between Epilepsy Action, the Epilepsy Society and the Royal College of General Practitioners to support the development of local epilepsy services.
In Scotland, the need for communication of risk has been highlighted by two Fatal Accident Inquiries initiated by the government in 2002 and in 2011. The first Inquiry was a catalyst for improvements to services and the development of managed clinical networks. Leading up to the second Inquiry in 2011, a new epilepsy nurse was appointed and a tool for practitioners was developed (Leach, 2012). The second Inquiry prompted action including government funding for research with people with epilepsy (Harden et al., 2014) and the introduction of a chapter on SUDEP in the new SIGN guidelines (2015 expected). While these inquiries have been painful for all involved, there is some evidence they have contributed to an improved understanding and that practice has changed (Waddell, GC2014). A study with people with epilepsy did not find sustained levels of anxiety (Harden et al., 2014).
Looking ahead, there is still much to do. Epilepsy mythology and stigma still persists, and can remain an additional burden and trauma for bereaved families. If sign-posted to SUDEP Action, however, families can be given some hope today in a way that was simply not possible two decades ago. This can provide solace at a difficult time, with some families reporting it as a life-line. The launch of an Epilepsy Deaths Register has proved helpful to bereaved families and to researchers providing an infrastructure to support and engage the bereaved in research. The Register already collects vital information and is a collaborative platform between families and existing Brain and Tissue Banks to maximise genetics research (Smithson & Hanna, GC2014). The challenge is to ensure that all families are given the opportunity for engagement and support.
Jane Hanna, Chief Executive, SUDEP Action, England, UK
John-Paul Leach, Consultant Neurologist, Southern General Hospital, Scotland, UK
How to cite:
Hanna J & Leach J-P. UK: looking ahead. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.