Epilepsy & Suicide: Breaking The Silence - Prof. Andrea Cipriani, Oxford Precision Psychiatry Lab, University of Oxford
Sometimes people with an epilepsy take their own lives - and this is more common that many realise. Psychiatrist & researcher Prof. Andrea Cipriani joins Torie to talk of the psychiatric symptoms of the epilepsies, including depression, anxiety, psychosis, and even suicide; expressing the need for joined-up care between neurology and psychiatry, and why lived experience must shape treatment, management, and where possible; prevention. Transcription and links to Andrea are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
-
00:00 Andrea Cipriani
“I think that the default approach is to consider a mental health issue in people with epilepsy as a very likely feature…”
00:10 Torie Robinson
Mental health issues are commonly part of the epilepsies - we know that seizures are just one aspect. But what happens when somebody’s mental health symptoms are just too much to bear? Well, today we hear from top psychiatrist, professor Andrea Cipriani from Oxford University all about it and what we can do to decrease suffering. Please note that today’s chat will include parts on suicide - so if this is upsetting or triggering for you (which it often is for me - so I totally get it!) please do skip this episode and pop over to one of our others that are far more chirpy!
If you’re new and you haven’t done so already, please do like and comment on this episode and subscribe to our channel, so as to get way more people learning about the epilepsies!
00:51 Andrea Cipriani
I'm a psychiatrist in this country, in the UK. My job is called clinical-academic; so, I see people with mainly mood disorders, treatment-resistant depression or bipolar disorder in the NHS at Oxford Health NHS Foundation Trust. But, this is, overall - on average, sorry(!) - 1 day a week. For the rest of the time, I do research; I have a lab of very talented researchers and clinicians and statisticians, methodologists. We call it “Oxford Precision Psychiatry Lab” within the University of Oxford because our aim is to use existing data, existing evidence to personalise treatment for people with anxiety, depression, and psychosis.
01:52 Torie Robinson
The psychiatric morbidities (I call them morbidities rather than comorbidities (in association with epilepsy) because they come hand in hand); could you give us some statistics on psychiatric diseases or conditions in people with an epilepsy versus the rest of the population?
02:09 Andrea Cipriani
As you say, these are very common features of this… - what we used to divide as psychiatric and neurological disorders. But now, having this “brain health” approach, of course, it is… we try to consider them together. And the incidents of prevalence (so how many people there are in the general population with depression); it varies a bit. There are about 300 million people in the world, but if you consider 1 in 6 or 8 people in the world has this kind of problem (in the general population. So, if you look at your wait in the waiting room of a GP surgery about 1 in 6 is going to see the GP for this depression problem). In people with epilepsy, the incidence (so the number of people with depression and psychiatric symptoms) is even higher. And this is a common feature of brain health disorders like Parkinson's as well, multiple sclerosis, we know about also motor neurone disease, so this big diagnosis in neurology, and there's a close link into them. So, I think that the default approach is to consider a mental health issue in people with epilepsy as a very likely feature. So, the crucial thing is to ask people about their mood, about their mental health, because it's likely to happen.
03:58 Torie Robinson
We first met at a really cool, sort-of mini conference in Rome last year. Can you tell us about that? I mean, you were our lead basically, so what was the whole purpose of it?
04:09 Andrea Cipriani
Yeah, it was an experiment(!) because with my friend, colleague, John Torous from Harvard, we used to do these - we call them “summits” - where we invite experts with different backgrounds to spend a couple of days together and discuss about what are the challenges and potential solutions in a specific area. We started with digital mental health but then we realised that one of the big unmet needs is to combine neurology and psychiatry into something which is meaningful for our clinical practice. And the idea was to start with a very important clinical issue like epilepsy and explore what are the psychiatric morbidities in people with epilepsy to gather information but also trying to brainstorm and find solutions. And we, I say in “experiment” because we know someone in the field but it's like a snowball; we ask these people to invite other people, and as you know perfectly, one key thing for the whole event was to have the voice of people with lived experience in the room (this is why we invited you and you provided a material contribution to this meeting). But what we wanted to do was not only to discuss together about challenges and solutions; we wanted this to be evidence-based. So, at the beginning of the meeting, we presented the results of a systematic review (just to be on the same page) and discuss the different topics informed by the evidence. And at the end of the meeting, the ambition was to work together all the people in the room, call for a paper that will be published in the scientific literature to contribute to the international discussion and debate around these topics - because we need to have an impact on clinical practice. It cannot stay within the 4 walls of this room.
06:18 Torie Robinson (04:53.388)
How do you feel it went? Like, there was a lot of conversation, not necessarily… people didn't necessarily always agree…!
06:24 Andrea Cipriani
Yeah, that's the beauty! That's the beauty; having different voices, different perspectives. I think there were some… I think it went very well and we have now submitted the paper, which will hopefully be published soon. The great thing was there was an agreement for instance around some big challenges. So, the high burden of this unmet psychiatric need in people with epilepsy and the key thing, the key message I think was we need to move epilepsy care beyond this narrow focus on seizure control or SUDEP, of course, and we need to have routine screening of mental health difficulties (as I mentioned before). And also, we need better research or more research understanding the psychiatric disorders in people with epilepsy. But the other important thing that came as a challenge was this need for a holistic approach, holistic care. So, we need to foster the biosocial biopsychosocial approach: social aspects, quality of life, cultural, ethnicity, gender-specific aspects; these are all important. The third point is the delivery of care. So, we need to have more collaborative models embedding the voice of the patients and people with lived experience, but also expand this neuropsychiatric services where we “force” (in inverted commas) people with different expertise to work together and speak the same language.
08:02 Torie Robinson
You couldn't have put it more perfectly. That's what I took from our meeting as well. And yeah, it shouldn't be a stressful thing for the service user; it should be something that is managed for them. If we're unwell and need help, it's not something that we should be trying to be juggling ourselves, right? There should be that sort of structure and almost like… I don't know, what do we call it… multidisciplinary team, really, of clinicians who are able to talk to each other to help the individual.
08:30 Andrea Cipriani
Totally agree. And, it was interesting because as you probably remember, we discussed also topics that are difficult to discuss, like, suicide (because the evidence is that in people with epilepsy, we have higher rates of suicide), so one of the key things we need to do is to increase the education in staff around the increased risk of completed suicide and also identify (and that's the research part) better tools to assess the risk for this individual. Because we need to help, we need to be vocal, actively ask about this, but also we need to be able to assess and stratify risk because not everybody is the same in terms of risk. And this is where in the future I see that AI can help; because you can use, develop these risk stratification tools for events like suicide using this big data that we have available and using AI to basically have better information about these risks.
09:38 Torie Robinson
And I think also, weren't we, we were talking about prevention of people getting to that stage as well. So how do we achieve that?
09:45 Andrea Cipriani
It is of course very… almost impossible to be sure about the individual risk. So, we need to work as a priori starting point. So, we need to work with the person having, however, some elements of judgment. So, there are characteristics that can predispose someone to complete suicide or at the same time having psychiatric morbidities. So, we need to have a starting point and then work with the patient, with the family, with the carers; and monitor over time. Because that's the other important thing (I said before); I see this as a journey; it's not a one-off thing. We need to establish a relationship and [there] has to be mutual confidence one to the other. So, I trust my clinician and the clinician should be trustworthy. This is something we often forget because it's not… a normal job is to work together and trying to help people reduce the burden of the suffering. Also in Rome, the voice of people with lived experience is like fresh air and fresh blood because it really shows and shed light on what we should do next. So, also in terms of research gaps, the training, and the specialist nurses, the collaboration mental health with epilepsy specialists is fine. But also, the co-production with people with lived experience should be a mandatory thing for all the funding. It’s a no-brainer!
11:27 Torie Robinson
And why isn't it in so many places? It's crazy!
11:30 Andrea Ciprinai
Hahaha.
11:30 Torie Robinson
Well, it's kind of like the old-fashioned way of doing things, isn't it? And I do think that lots of researchers and clinicians do find it a bit scary because it's something you weren't trained on at uni and it's still kind of a new thing. So, you've kind of said it, put it in a nutshell really, some of the benefits of working with service users or people with epilepsy or people with whatever disease; because it gives you that insight. It's not about us moaning at all. It's not about us having a go “Argh, argh, argh, life is unfair!” (even though it is!), about working together.
12:05 Andrea Cipriani
As you said many times during the meeting, it is a cultural approach that we need to have. So, speaking the same language... But I remember the discussions we had about a huge topic like the functional dissociative seizures; that's something that when I started medicine last century…
12:24 Torie Robinson
Hahaha!
12:25 Andrea Cipriani
Hehehe.
12:26 Torie Robinson
You know, you're not there yet, but yeah…
12:29 Andrea Cipriani
Almost 30 years ago. No, I'm joking. 20 years ago. The problem was that we, as I said, having this medical-centred approach we tend to put labels on things rather than understanding. And we really lack understanding of the mechanism or the - as I said - this functional dissociative seizures - or how we can help people managing something even if we struggle to find a priori - something that works, having multiple attempts, and working together over time, I think helps…
13:08 Torie Robinson
Mm-hmm.
13:08 Andrea Cipriani
… because everybody's different. So, we don't have pre-specified solution to problems but the mindset should be “Let's tailor the treatment to the individual” - in terms of treatment, as I say, but also prognosis. I need to tell people how likely is this to be recurrent, what are the implications? The side effects of medication is a crucial thing. We can't ignore important side effects that may have an impact on the quality of life of individuals from (we discussed before) gastrointestinal, constipation, diarrhoea, tremor, to sexual side effects, and also in a positive sense, so sleep impact or mood stabilisation and so on.
13:49 Torie Robinson
And then also, think we spoke about looking beyond medication sometimes. And actually, ideally, looking at other things before we look at medications. So, how can we help support person with…in their family situation or if they need to get their weight under control, they can be underweight, they can be overweight, you know, how can we help them get some exercise if they're able to leave the house, of course (because sometimes we're not). It's not just about drugs. I think that was a key message too, right?
14:18 Andrea Cipriani
Absolutely. But, the non-pharmacological treatments is a huge range because, as you say, it can be psych education for the person or the family. We have also the biofeedback. I have experience with mindfulness for some people is great - other people hate it! So, this is not a recipe for everyone. But what I learned from the meeting in Rome is also how important is physiotherapy for the rehab is a crucial aspect to take into consideration, because, as psychiatrists, we tend to be (because the head is separated from the body, haha), we tend to be segmental, but actually, the holistic care approach is exactly also about the physical experience, absolutely.
15:01 Torie Robinson
Thank you to Andrea for helping us to challenge some of the awfulness that too many of us experience, and, for truly valuing patient/service user input in his work! Next week we’ll hear more from Andrea and about how he is Advancing Mental Health Research Through his project GALENOS - the Global Alliance for Living Evidence on aNxiety, depressiOn and pSychosis)!
Check out more about Andrea and his work on the website t-or-i-e robinson.com (where you can access this podcast, the video, and the transcription of this entire episode) all in one place. And if you’re new and you haven’t done so already, please do like and comment on this episode and subscribe to our channel - so as to get way more people learning about the epilepsies!
See you next week!
-
Andrea Cipriani is Professor of Psychiatry and NIHR Research Professor at the Department of Psychiatry, University of Oxford, Honorary Consultant Psychiatrist at Oxford Health NHS Foundation Trust and Clinical Lead of the Bipolar Disorder Research Clinic. He is currently the Director of the NIHR Oxford cognitive health Clinical Research Facility and of the Data Science Theme of the Oxford Health Biomedical Research Centre, he leads the Oxford Precision Psychiatry Lab and is the Editor in Chief of BMJ Mental Health.
His main interest in psychiatry is evidence-based mental health and his research focuses on the evaluation of treatments in psychiatry, mainly major depression, bipolar disorder and schizophrenia. His research in the methodology of evidence synthesis has now a specific focus on data science and precision mental health, trying to assess the validity, breadth, structure and interpretation of innovative statistical and machine learning approaches to better inform the decision-making process between patients and clinicians and personalise treatment in routine clinical care.
Professor Cipriani has published 456 articles (on Scopus), with Scopus h-index of 72. More than 20 of his papers are among the Highly Cited Papers in Web of Science (InCites Essential Science Indicators), and since 2009 he has published 13 original articles in The Lancet, eight of which as first or last author. He has been Highly Cited Researcher (Clarivate) for the past 5 years in the field Psychiatry/Psychology, and has been collaborating with international experts from other fields of medicine, especially neurology.
Working with a wide range of colleagues globally from different disciplines, Professor Cipriani developed and tested novel statistical techniques in evidence synthesis and applied clinical research that facilitate the translation of evidence synthesis into individualised routine clinical care and improve patients’ outcomes. For example, he validated innovative methods to identify specific patient characteristics that have an impact on treatment response, dose optimisation and premature treatment discontinuation in depression, bipolar disorder and schizophrenia, and for the first time in mental health ranked evidence-based interventions using comparative effectiveness research to guide clinicians to choose the best pharmacological treatment for each patient. He is the Chief Investigator of PETRUSHKA (£2m) and PRADA (£5m), two international randomised controlled trial that aim to personalise pharmacological treatment for adults with major depressive disorder in the UK, but also with sites in Brazil, Canada, Nigeria and Pakistan. With the WHO, he co-authored a manual on psychopharmacology, which provided evidence-based information to guide and influence health care professionals in low- and middle-income countries. As part of the WHO Gap Action Programme, this manual was distributed as a reference source to assist general practitioners in using evidence-based medicines for mental disorders in routine clinical practice.
Professor Cipriani is also the Director of GALENOS (www.galenos.org.uk) and on the Editorial Board of the Lancet Psychiatry.
Since moving to the UK in 2013, he has been a regular and sought-after speaker at public engagement events locally, nationally, and also internationally. He was part of the expert reference group of the Royal College of Psychiatrists for developing Choosing Wisely in the UK, aiming to promote conversations between doctors and patients to understand and share decisions on the basis of the best evidence. He has presented and discussed his research on live television (BBC, Australian Broadcasting Corporation News), recorded documentaries (BBC One Panorama, Danish Broadcasting Corporation), radio (BBC Radio 4, BBC World, BBC Oxford, LBC) and newspapers in the UK and internationally. -
University of Oxford andrea-cipriani
The Oxford Precision Psychiatry Lab (OxPPL) evidence-based-mental-health
NIHR andrea-cipriani
ORCiD 0000-0001-5179-8321
Twitter/Xand_cipriani