During series 13 of What’s Up TV we championed the cause of Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is when a person with epilepsy dies suddenly and prematurely and no reason for death is found. It affects roughly 1 in 500 people with epilepsy and results in over 600 deaths each year. However, gaining accurate figures of SUDEP’s impact has long been stymied by a lack of awareness, even within the medical community, about epilepsy and about SUDEP specifically.
“SUDEP is a real risk to my daughter and it scares me 24 hours a day”
Before I began working on this project I had a very limited understanding of epilepsy. I mistakenly thought that the correct term to describe someone with epilepsy was ‘epileptic’, and I had absolutely never heard of SUDEP. Frankly, I was as ignorant about this area as the majority of the population are, whose extent of epilepsy awareness is the flashing lights warning at the start of a TV programme.
However, after just a few cursory google searches, a few emails and phone calls, I found myself being shocked by what I was finding:
I was shocked that despite leading to over 600 deaths each year SUDEP research receives no government funding and that charities asking for support have been told that SUDEP is ‘not important enough’.
I couldn’t believe that many medical professionals don’t inform their patients about the potential risk of SUDEP and I was appalled that in many cases, medical professionals are completely unaware of the risk of SUDEP.
I felt anguish when I spoke to a mother who had implored her daughter’s paediatrician to diagnose her with epilepsy, but who was told ‘not to worry’, before her daughter died from SUDEP, aged 11.
I was angry when I learned that there is such little support for those that lose loved ones to SUDEP that one woman flew half way across the globe to meet people whose shared experience she could find comfort in. That woman told me that if she hadn’t found her ‘purple family’, she might not be here today.
“My daughter Grace passed away in 2011 from SUDEP. She was 7 years old. None of her doctors ever talked to us about SUDEP.”
Throughout our investigation into SUDEP I was able to speak with a wide variety of people. I spoke to people bereaved by SUDEP and to medical experts. I spoke to charities pushing for progress and an MP trying to support them. But for all I heard about the importance of making people aware of their risk, I felt that there was a conspicuously absent voice from my piece: the people at direct risk of SUDEP, in other words, people with epilepsy.
Specifically, I wanted to know how people with epilepsy felt about the prospect of learning about the potential risk of SUDEP. This is because the main argument in favour of medical professionals ignoring guidelines from the National Institute for Health and Clinical Excellence and choosing not to inform patients about SUDEP is that it protects patients. An epilepsy diagnosis brings its own trauma, why bring added anxiety when the likelihood of SUDEP occurring is slight?
I understood the logic, yet at the same time I could not get my head around the idea that patients didn’t have a right to be informed. Asthma has a risk of death, so does diabetes, but as I understand it, the full picture is laid out to you and therefore you can take the necessary precautions. Why would the same not be done with SUDEP?
“I’d rather live with the worry than live a life mourning the death.”
So What’s Up TV conducted a poll, to find out how people with epilepsy felt about SUDEP and my results told me that the majority of those with epilepsy were aware of the potential risk of SUDEP (87%). Interestingly though, 0% had heard about SUDEP from a GP and only 15% had been first informed by a neurologist, while the majority (54%) had come across SUDEP as a result of their own research.
This tallied with our interview with Professor Ley Sander who said that increasingly people were coming to him with a prior knowledge of SUDEP. However, SUDEP risk is very much related to people on an individual basis (as a result of the nature of their epilepsy, approach to epilepsy management and lifestyle). As such, Professor Sander said that patients’ research into SUDEP only increases the need for medical professionals to inform themselves, so that they can give accurate information and reassure patients, rather than leave them scared by what they have read on the internet.
“Epilepsy is such a misunderstood condition, most people seem to think it’s just to do with flashing lights and don’t realise that it can be fatal.”
The poll actually supported the argument put forward by members of the medical community, suggesting that learning about the potential risk of SUDEP had made people with epilepsy more anxious, with 90% of respondents suggesting that it had increased their anxiety.
Interestingly though, amongst those who were currently unaware of the potential risk of SUDEP, there was much less consensus with only 58% suggesting it would make them more anxious, compared to 42% suggesting knowledge would reassure them.
A comment left at the end perhaps sums up the situation for people with epilepsy: “I did experience anxiety upon learning of SUDEP but the knowledge was empowering and helped me to accept my Epilepsy diagnosis”. This was reinforced by the way in which Professor Sander, as much as he was willing to offer arguments both for and against informing patients about SUDEP, was adamant that people should be made aware of their risk and that families ‘wanted to know’.
“We lost our son James 2 years ago to SUDEP. We were never informed about the risks of SUDEP, if we had we would have been extra careful with his medication and asked to see a specialist more often.”
In fact, this sentiment tallied with the final question in the poll, which was aimed at all respondents, so as to include those who had lost loved ones to SUDEP, and which asked whether medical professionals had a responsibility to inform patients about the risk of SUDEP.
Overwhelmingly people answered in the affirmative with 80% suggesting that medical professionals should always inform patients, 17% suggesting they should in certain circumstances, and only 3% believing that medical professionals had no responsibility to inform patients about the potential risk of SUDEP.
The poll itself gained 81 responses and as such, the extent to which it fully represents the views of those with epilepsy and those who have lost loved ones to SUDEP has to be evaluated. Nonetheless, the findings do align with much of the anecdotal evidence which we collected throughout the series and which came from a variety of individuals, all connected by their association to SUDEP.
“I had never heard of SUDEP until I received my 22-year-old son’s autopsy report. If only we had known the risks.”
By way of conclusion I would like to offer my own perspective on SUDEP awareness and to end with some advice for anyone who feels that they may be at risk and is in need of more information and support.
A diagnosis of epilepsy must be traumatic, not only because of the health and career implications, but because as recently as 2015 Young Epilepsy found that 90% of people with epilepsy had faced discrimination. Worryingly, this represented a 10% increase on the 2013 findings.
However, from what I have learned about SUDEP, it is vital that people understand what puts them at risk of sudden, unexpected death. I vividly remember, speaking to a woman who told me that before her husband died of SUDEP, she was pregnant and they were redecorating their house. Unaware that stress was a factor increasing the risk of SUDEP, this woman was left with a sense of guilt and the lingering thought that had she known, they could have simply redecorated some other time. But he had to have known, she had to have known.
I do feel very adamantly though that the spreading of good quality information has to start with medical professionals. GPs do an excellent job and have incredible workloads, but more has to be done to support them so that they can support their patients who have epilepsy and who could be at risk of SUDEP. In Cornwall, steps taken by Dr Rohit Shankar to monitor changes in patients’ epilepsy have significantly reduced SUDEP deaths in the area. Furthermore, with free apps like EpSMon and SUDEP Action's SUDEP and Seizure Safety Checklist, which has been developed specifically for clinicians, the tools are there, they just need to be implemented.
“I believe my son would still be alive if we had known about SUDEP.”
There is no doubt in my mind that SUDEP has been neglected, those who fell victim to it were neglected, the families left behind have been neglected and those currently at risk of SUDEP are being neglected.
For anyone who is concerned about their potential risk of SUDEP I implore you to speak to your GP or your Epilepsy Nurse or your Neurologist. Furthermore, if you have a suspicion and you are being told not to worry, don’t be afraid to get a second opinion.
The most important thing to do is to manage your epilepsy, meaning you take your medication regularly, ensure that you are on the correct medication and dosage, and keep in regular communication with your GP, neurologist or epilepsy nurse. In this respect, technology is your friend. But be aware that risk also comes from lifestyle choices, so be attentive to your tiredness and stress levels, particularly if you are living alone.
There are some fantastic organisations and valuable support networks out there, but undoubtedly more can be done to support these groups in tackling SUDEP and supporting people in its aftermath. Furthermore, more needs to be done to inform medical professionals who in turn can inform their patients about the risk of SUDEP and how to minimise it, thus empowering them.
In a broader sense, we have to move past the legacy of mistrust and misrepresentation of epilepsy. This, allied with a concerted effort to promote SUDEP awareness and understanding, can help reduce the numbers of SUDEP deaths significantly. And with 42% of SUDEP deaths being considered preventable, the power really is in our hands.
All quotes were taken from the comments of the What’s Up TV poll.
You can see our report featured on Episode 1 of What's Up TV TX 27th January 2018 and the SUDEP campaign runs throughout the series.
If you have been bereaved by epilepsy and would like to talk to someone you can call The SUDEP Action support line on: 01235 772852 or email firstname.lastname@example.org
There is further information about SUDEP from a variety of organisations below: