Avoiding premature death in epilepsy
BMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h718 (Published 10 February 2015) Cite this as: BMJ 2015;350:h718
All rapid responses
Leone Ridsdale’s editorial “Avoiding premature death in epilepsy”(1) presents a renewed and perhaps revised challenge to primary care. There have been recurrent challenges over the past 20 years, with The National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy–death in the Shadows(2), being a notable example. Epilepsy remains a Cinderella medical condition and has a number of differences when compared with other chronic diseases, for instance, the impact of a single seizure resulting in injury or death, or the social impact of the loss of a driving licence, or the loss of employment.
The impact on primary care epilepsy management of the epilepsy QoF points has, I would suggest, been limited. The results of my own review of annual QoF results in my locality in a previous year which suggest to me an excessive tolerance of poor seizure control. But I would also suggest the removal of these QoF points may well be more damaging. Professor Ridsdale’s suggestion that risk management by close management of medicine adherence could have been a welcome extension. However as it stands the message from policy makers in respect to encouraging epilepsy management in primary care is dispiriting. The treatment of depression can be inhibited or delayed by the concern that antidepressants lower seizure threshold although the data may only be based on observations in overdose rather than therapeutic dosage. As Professor Ridsdale points out, there is a positive impact of effective depression treatment on seizure control. In this respect, the challenge is to national clinical leaders to provide advice and guidance. In primary care, epilepsy and its treatments remain, at least in part, poorly understood, thereby inhibiting clinical activity. The challenges in Professor Ridsdale’s editorial, however, rely on routine general practice skills and should be examined closely, resources allowing. A cornerstone of general practice is the provision of continuing care and there is an opportunity to enhance this role to this patient group.
1. Ridsdale, l. “Avoiding premature death in epilepsy”. BMJ 2015;350:h718
2. Hanna N J, Black M, Sander JWS, Smithson WH, Appleton R, Brown S, Fish DR (2002). The Stationery Office.
Competing interests: No competing interests
Dear Editor,
This is an important article, published at a time when neurology waiting times are long and there is pressure to discharge patients from review who are relatively stable. And this is to a community where QOF payments have been reduced so that there is a requirement only to have register of patients with epilepsy.
The NICE guidelines(CG137) recommend that adults should have a regular structured review with their GP, but depending on the person's wishes, circumstances and epilepsy, the review may be carried out by the specialist.
Neurophobia is certainly common amongst GP trainees in Northern Ireland, despite the fact that we actually see quite a lot of neurology in our day to day work. If we are to serve our patients well, and to do our part to try to reduce SUDEP in these (usually young) patients, then it is imperative that GPs are aware of the factors that contribute to premature death. This is an informative and practical article which could lead to a useful tool to assist the annual review.
1. www.nice.org.uk/guidance/cg137
2. McCarron M, Stevenson M, Loftus, A and McKeown P: Neurophobia among general practice trainees: The evidence, perceived causes and solutions. Clinical Neurology and Neurosurgery Vol 122; July 2014: 124-128
Yours sincerely,
Dr Louise Rusk
GP and GPwSI Headache
Competing interests: No competing interests
The letter, and associated call to action, by Ridsdale is timely and demands a response from professional bodies. SUDEP has a devastating impact. It appears now that an evidence base is emerging to reduce risk. Importantly, but not solely, based on improved seizure control. Achieved through treatment access, adherence and lifestyle change.
To add to this call it should be noted that many individuals at risk of SUDEP are adults with an intellectual disability who face their own challenges in our health system.
This call should be strongly supported and GPs should be enabled by other professionals to ensure that those most vulnerable in our health system are also included in this prevention process.
Competing interests: I am a medical advisor to SUDEP ACTION. I have met many people who have lost their family members to SUDEP
Dear Editor
SUDEP Action welcomes this editorial. In 2002 an editorial in the Lancet called for interventions using current knowledge and available therapeutic options as a strategy to cut epilepsy deaths (1). It followed the National Sentinel Clinical Audit of Epilepsy-Related Death report in 2002 which found that 42% of epilepsy deaths were potentially avoidable (2). There have been national guidelines and standards for epilepsy since then but investment in a community-based intervention is urgently needed.
SUDEP Action is the voice of over a thousand bereaved families across the UK and has worked to prevent deaths since founding in 1996 (3). The charity funded the 2010 pilot study and the english study in 2013 that are highlighted in this editorial. In the last ten years there have been have recommendations from national investigations into epilepsy-related maternal and child deaths and Fatal Accident Inquiries into individual deaths (4). All of these highlight the need for better risk management in epilepsy.
In the US the government has recently invested $5.9 billion into researching Sudden Unexpected Death in Epilepsy. The UK is uniquely placed because of our national health service to develop a relatively simple intervention to cut epilepsy death rates. Many of the people who are at risk of dying will also share a risk profile for patients attending Accident and Emergency departments. This editorial brings to attention a huge opportunity to develop an intervention to improve management of epilepsy in the community and make life safer for people with epilepsy. Saving lives will also mean we begin to reduce the traumatic impact of these deaths on families and on society.
1) Pedley T, Hauser W.A. Sudden death in epilepsy: a wake-up call for management. The Lancet May 21, 2002 http://image.thelancet.com/extras/02cmt85web.pdf 2
2) Hanna J, Black N, Sander J, Smithson H, Appleton R, Brown S, et al. National Sentinel Clinical Audit of Epilepsy-Related Death: Epilepsy - Death in the Shadows. Norwich: The Stationery Office; 2002. Available from www.sudep.org
3) Hanna J & Leach J-P. UK: looking ahead. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation. Published online SUDEP Action, SUDEP Aware & Epilepsy Australia; 5th December 2014 . Available from: www.sudepglobalconversation.com.
4). www.sudep.org/epilepsy-deaths-reports
Competing interests: SUDEP Action has collaborated with and funded research by LR
Dear Editor,
Professor Ridsdale highlights that many of the risk factors for epilepsy mortality are known and calls for greater investment so that this information can be translated into practice and avoidable deaths reduced. Historically, epilepsy has received less research funding that its prevalence and impact warrants (1).
The editorial suggests that a practicable, risk assessment tool could be created so general practitioners (GPs) could identify people with epilepsy on their registers who are at high risk of death and warrant additional support. To ensure the benefits of such a tool are fully realised, GPs will need to be engaged with from the start to maximise its uptake. Death in epilepsy remains a divisive issue. Many clinicians do not currently discuss Sudden Unexpected Death in Epilepsy with their patients (2,3), despite evidence that people with epilepsy want information (4).
The use of such a tool may need to also be incentivised. This would require a reversing of the stripping back of rewards offered via the Quality and Outcomes Framework to GPs for the provision of quality care for epilepsy; 90% fewer points are available in 2014/15 compared to 2013/14 (5)).
Yours sincerely,
Adam Noble.
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Dr Adam Noble
Institute of Psychology, Health & Society,
University of Liverpool, UK.
References
(1) Gross CP, Anderson GF, Powe NR. The relation between funding by the National Institutes of Health and the burden of disease. N Engl J Med. 1999; 340:1881-1887.
(2) Friedman D, Donner EJ, Stephens D, Wright C, Devinsky O. Sudden unexpected death in epilepsy: knowledge and experience among U.S. and Canadian neurologists. Epilepsy Behav. 2014; 35:13-18.
(3) Morton B, Richardson A, Duncan S. Sudden unexpected death in epilepsy (SUDEP): don't ask, don't tell? J Neurol Neurosurg Psychiatry. 2006; 77: 199–202.
(4) Xu Z, Ayyappan S, Seneviratne U. Sudden unexpected death in epilepsy (SUDEP): What do patients think? Epilepsy Behav. 2015;42: 29-34.
(5) NHS Employers. 2014/15 General Medical Services (GMS) Contract Quality and Outcomes Framework (QOF). Guidance for GMS Contract 2014/15. www.nhsemployers.org/~/media/Employers/Publications/2014%2015%20QOF%20gu... (accessed 10/02/15)
Competing interests: AJN has collaborated with LR.
Re: Avoiding premature death in epilepsy
The Association of British Neurologists endorses Professor Risdale’s call (1) for general practitioners to be remunerated for epilepsy monitoring—just as they are for other important long-term conditions such as like diabetes—and would welcome more general practice input to epilepsy care.
People with any long-term condition need help to take responsibility for their self-management and to become more equal partners in their care. Epilepsy is common (prevalence 0.75%) and serious; even those who are seizure free require regular review to discuss their ongoing treatment options. With such large numbers of people affected it is not practical for epilepsy management to be focused solely in secondary care.
Until 2014, epilepsy comprised part of the UK primary care Quality Outcomes Framework (QOF). This helped primary care engagement with the clinical management of epilepsy, improved epilepsy care in the community, gave people with epilepsy better access to specialist input, and may have helped to limit the tragedy of epilepsy-related death (2). Removal of epilepsy from the QOF is a shortsighted and backward step and we call, on behalf of our patients, for this to be reinstated.
Phil Smith
on behalf of the Association of British Neurologists
References
1. Ridsdale L. Avoiding premature death in epilepsy. BMJ 2015;350:h718 doi: 10.1136/bmj.h718.
2. Shankar R, Cox D, Jalihal V, Brown S, Hanna J, McLean B. Sudden unexpected death in epilepsy (SUDEP): development of a safety checklist. Seizure 2013;22:812-7.
Competing interests: No competing interests