Epilepsy: Care For People Who Also Have Intellectual Disability - Mike Kerr, Cardiff University, UK
Neuropsychiatrist Mike Kerr talks about the intersection of epilepsy and Intellectual Disability, emphasising the complexities of communication, the need for tailored communication strategies, the needs of individuals and caregivers, and the importance of building relationships in healthcare. Mike and Torie also touch on new treatments and the overall quality of life for the people affected. Transcription and links to Mike below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Mike Kerr
“Of which pain, a lot of people need painkillers after seizures, and the tonic-clonic seizures, and you almost never get a person with intellectual disability taking a painkiller ‘cause they never communicated the pain.”
00:11 Torie Robinson
Fellow homo sapiens! My name is Torie Robinson, and, welcome to, or welcome back to: Epilepsy Sparks Insights. If you’re new and you haven’t done so already, please like and comment on this episode and subscribe to our channel - so to support our mission to decrease the discrimination faced by and improve the quality of life of those affected by the epilepsies around the world. And also, importantly, do get everybody appreciating the amazing epilepsy research that is out there!
So, today: we know there’s a clear link between the epilepsies and intellectual disability. I personally feel that people affected by both of these (and often heaps of other health issues simultaneously) don’t have enough of a voice, publicly - despite their needs! So that is why I am chuffed to introduce to you today, lead neuropsychiatrist Mike Kerr - who is an expert in providing the best care possible to those affected!
01:04 Mike Kerr
So, I'm Mike Kerr. I've worked in epilepsy for over the last 25 years as a specialist in epilepsy. And over the years, I've become specifically focusing on adults with an intellectual disability and complex epilepsy, as well as working on various research projects over many years, often with colleagues around the world. So, currently, I have little bit more time in my hands than I used to and I'm still doing clinics for people in the middle of Wales in the countryside with complex epilepsy.
01:37 Torie Robinson
So, could you for everybody who's not necessarily familiar, what's the definition of somebody with an intellectual disability?
01:44 Mike Kerr
It can be quite difficult or very, very easy to identify people with disability, but the main themes are really around the age at which the person has a cognitive impairment - usually defined as an IQ of under 70. So, it has to commence in childhood, under 18, have the cognitive impairment, and then this has to actually have an effect on the person's ability to function in life. So, it's probably something else about the cognitive impairment, something to do with perhaps the language or the planning skills or something that might make a person drop into having an intellectual disability. But, of course, in epilepsy we tend to see a population of people who often have more severe intellectual disability because that associates with more epilepsy and lots of the complex sorts of genetic epilepsies.
02:32 Torie Robinson
So, what are the statistics then? What is the link between intellectual disability and epilepsy?
02:38 Mike Kerr
Well, I don't think I can give you a statistic for that. The link is something I think of a debate! We know there's a link, so, it's very common. So, in a population who would be getting care with intellectual disability in adulthood, around 20% will probably have epilepsy. But the actual link at what causes that is open to more debate. And we know there's a lot of interest in childhood developmental encephalopathies where it's sort of felt that the epilepsy, the condition causing the encephalopathy is causing the intellectual challenge but probably the epilepsy as well. It's quite hard to tease it apart.
03:16 Torie Robinson
What causes what, right?!
03:17 Mike Kerr
Yeah, I think people tend to feel, most people would feel very strongly that whatever's happening, the epilepsy isn't very good for the individual and that the better it's controlled without obvious unnecessary side effects, the better that person's developmental outcomes going to be. And in adulthood when development occurred to a large degree, epilepsy has its challenges as well in terms of risk of death and risk of injury and psychological risk and stigma of course still remains a massive problem for epilepsy and particularly in people who already stigmatised with their intellectual disability.
03:52 Torie Robinson
Indeed. So, well, moving on from that then, what are the common needs when people have epilepsy and intellectual disability as adults? And, also, what are the needs of the caregivers?
04:03 Mike Kerr
I suppose, you know, that the main message is it's the same needs mainly, but they are sometimes more challenging and sometimes some become more relevant and more frequent. So, a person with intellectual disability can have exactly the same epilepsy as anybody else. So, it may be to deliver the care of that epilepsy can be quite complicated and that will focus a lot on communication. We mainly promote our own health and do our own communication with physicians. But lot of people with intellectual disability have challenges with their language; ranging from some language, which needs a lot of support, to no language. So, the first challenge is to make sure we're getting the right thing for the person because they may not be able to tell us what the right thing is they want. And, of course, we then have to use proxies - of which the best are families. And then, of course, a lot of people will have care providers. So, the big challenge is communication and then on top of that you get I think a selection of other challenges related to the types of seizures. So, you may well be more likely to have a difficult epilepsy or a genetic epilepsy, which might have other physical health issues, or you might have or you have behaviour problems to the degree… which is not in any way any means but it affects people's ability to diagnose some behaviours of epilepsy. But it very much affects people's decision making about medication because of concern that medication will cause behaviour in some way more in people... So, there's quite a range. Another one which I think is very important is the ability to have all the investigations you need.
05:53 Torie Robinson
Uh-huh.
05:54 Mike Kerr
So, ‘cause actually, to get your investigations you also need to be a good communicator of your own health in the UK and if you're not fighting your own corner you… it’s going to be difficult, take a long time and people will begin to make, will make decisions for you which might be what I'd call “paternalistic” and basically saying “You don't really need it” or “You're doing fine” and this sort of thing So, there's quite a lot of challenges which all can, which are all manageable.
06:11 Torie Robinson
Are all manageable if we have the right team…
06:13 Mike Kerr
Yeah.
06:13 Torie Robinson
…around the individual and the whole family, right?
06:16 Mike Kerr
Yeah.
06:16 Torie Robinson
Sometimes I think it's access to that which can be a bit of a struggle. Sometimes I think about people in this situation with intellectual disability and epilepsy and think “What are they actually feeling and thinking?” and then “How can they express that? Can they express that?”. And then the interpretation of their communication or limited communication, I guess can just be wrong, right? So, how do you make our perception of how they are feeling and what they're experiencing accurate?
06:47 Mike Kerr
Well, I think the thing is to make it as accurate as you can and to not… very important is not to presume a person can't communicate.
06:54 Torie Robinson
Mm-hmm!
06:54 Mike Kerr
So, I will see a lot of people who can communicate and they might not want to communicate to me (haha!)...
07:04 Torie Robinson
Haha!
07:04 Mike Kerr
…and they might not like the environment, and they might find particularly, ironically, Teams meetings extremely difficult and extremely challenging to communicate without all the queues around. But many people I've seen who…[they] just need time and will give a lot of… just need time to literally get the words out.
07:21 Torie Robinson
Mm-hmm.
07:21 Mike Kerr
Other people will need communication aids and other people will have carers who they talk to for ages about what they want done and people will have families who've learned some of the nuances of whether a behaviour or emotion is a pain or a statement or a wish. So… but I think the worst thing we can do is miss someone who can communicate quite well and just override them. But we will have people where we have to then take, I think, is the best guess by people who work a lot with people with disabilities, what people might be thinking, or what might someone feel who didn't have a disability in this situation, or why wouldn't that person feel essentially any different but might not be able to communicate it. Of which pain, a lot of people need painkillers after seizures, and the tonic-clonic seizures, and you almost never get a person with intellectual disability taking a painkiller ‘cause they never communicated the pain. So, you do get them to do it and some carers will learn that pain killers work best for the person afterwards. There are a lot of people, you know, there are fantastic speech and language therapist, there were carers and there were people who make, who makes easy read picture documents and things and I had a… one of our nurse has made a picture thing based on members of Take That recently for some reason! I can promise you that I don't really even really know who Take That are! And they made this fantastic thing to let the person say how happy they were and stuff and it was that fantastic focusing in on an individual and what they want to communicate about is what when you see that at it's best. But obviously it's going to be very, very difficult to discuss complex neurosurgery or something as it is with a lot of people, but it's specifically so. And then you have to use the legal framework sometimes for that, the Mental Capacity Act.
09:12 Torie Robinson
Of course. And do you know what I've thought sometimes, is; I wonder if the maybe lack of patience or understanding of some of us around these individuals, could that be something which makes a person more likely to have certain behavioural challenges as well?
09:28 Mike Kerr
Well, you can certainly wind people up I think, but you can really misunderstand people obviously. I think, perhaps, the classic thing would be putting too much pressure on someone with perhaps autistic traits, or too much an environment that's far too challenging for someone who doesn't like too stimulating an environment. And in the care environments when we're looking at just behaviour by itself, you know, we'll obviously look at the communication between carers and the person to wind them up. One of the things to do is if you give people too much to take on at once. And that…
10:00 Torie Robinson
Mm-hmm.
10:00 Mike Kerr
…I mean, it happens to us all. We think the best way is to just walk out of the room rather than take it all on, you know. So, it can… I mean, the challenge in epilepsy is that I think that everybody tends to think everything's caused by epilepsy when it isn't!
10:14 Torie Robinson
Right!
10:14 Mike Kerr
I think they say everything in life is caused by epilepsy, but in fact, epilepsy comes in and out of life and it comes in and out of what it does to you. And it's the same for person with disabilities., so having a terrible place to live will always be far worse than what an epilepsy drug could do to you in terms of your quality of life and stuff. So, you know, so otherwise… you’ve gotta have a very broad view of the individual and what they're experiencing and try not to jump to quick solutions - I think that's really, really important. Particularly if it's a big decision like take away a medicine or put in a medicine or something.
10:48 Torie Robinson
Thank you. That's so, important. I think something that I hear about commonly - and I've experienced it in the past - is that clinicians or, you know, your multidisciplinary team (if you have…are lucky enough to have one) that primarily look at seizure, seizure control. And it's like, actually, no, there are multiple things in this person's life. And even if you only in the back of your mind still think seizures, seizures; all these other things, as well as impacting quality of life and health, impact a person's likelihood of having seizures anyway, right? So, you've got to look at everything.
11:21 Mike Kerr
Absolutely! And you've also got to be very humble, I think, about your power in these situations and be honest about that humbleness to people, and then they perhaps recognise more what we're trying to do if we're all in it together. But, you know, the whole quality of life is very important and course the classical thing for that is people's physical health. So, if you… one of the problems you get if you’ve got poor communication skills is the inability to communicate your physical health. And there’s a lot of evidence in that and people with intellectual disability about, you know, unrecognised conditions. And they can be the cause of the person's… obviously the cause of the person's worsening of their seizures because there's an infection or something. So, basically you spend a lot of time communicating lots of options to people and try and come to a solution to the options where you can, or agree no one knows and then make a decision based on no one knowing! So, well, you don't know for sure that a behaviour was the person's drug, for instance, and noone’s ever going to know for sure unless you take it away. So, that is a decision based on not knowing. But it doesn't mean you can't do it. It's just that you have to admit it!
12:30 Torie Robinson
Yeah, admit it be patient and be open to contradiction, I think…
12:35 Mike Kerr
Yeah!
12:35 Torie Robinson
…and find the different ways of communicating with people. Like, through Take That!
12:40 Mike Kerr
But also, have knowledge. I'm not saying that I've got it particularly, but you know what families want is knowledge. They want the person to communicate the facts, not hearsay, and say “This is what happens when people take this medication. This is what might cause somebody to be sleepy and it might be their epilepsy or might be their drug or it might be their thyroid!”. And they want… the more information you can provide, I think that people - in my personal experience - people respect that and like that. I think people do get told a lot of unusual facts in their normal lives by people.
13:14 Torie Robinson
Mmm.
13:14 Mike Kerr
They get told all sorts of strange things about their condition by people who think they know about it, who've got no qualification at all. And particularly in learning disability where you have a very, very big care team perhaps, and you'll meet an awful lot of people who might have an opinion on epilepsy.
13:29 Torie Robinson
An opinion that might not necessarily be accurate, especially in their specific…
13:34 Mike Kerr
Yeah. It might be brilliant, but it might be really not at all brilliant! And then your job is to point out in gentle way that not at all… perhaps that this is not a good way to go, blaming the chocolate or something, blaming something which most likely you really like and focus on the seizures and the drugs and your professional status and let them hopefully come to a shared decision.
13:57 Torie Robinson
Thank you so much to Mike - for sharing with us the needs of people who have an epilepsy an intellectual disability and often other challenges too - and how we can help them to have an improved quality of life! Next week we have part 2 with Mike where we will continue our chat and hear recommendations for clinicians unfamiliar with ID and epilepsy, building relationships with people with ID and epilepsy - and their families - working with the whole team of a hospital/care service, medications, diseases or conditions other than epilepsy that people with an epilepsy often experience, and treating/caring for the person who has these illnesses - not just the illnesses themselves!
Check out more about Mike and his work on the website t-or-i-e robinson.com (where you can also access the podcast, the video, and the transcription of this whole episode) all in one place, and…
If you haven’t already, don’t forget to like, comment, and subscribe to the channel, and share this episode with your friends/colleagues/family members/universities/the bin person/the person down the shop, and schools - this supports our mission to decrease the discrimination faced by and improve the quality of life of those affected by the epilepsies… aaaaand get everybody appreciating the incredibly cool epilepsy research out there!
See you next week!
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Professor Kerr is Clinical Professor Emeritus at Cardiff University’s department of Psychological Medicine and Clinical Neurosciences. He currently works clinically in Powys University Health Board providing epilepsy services to adults with an intellectual disability.
His clinical practice is in the epilepsies associated with intellectual disability and in the assessment and treatment of epilepsy and psychiatric disorder. He was closely associated with initiatives in improving the public health of people with an intellectual disability including developing the Cardiff/Welsh Health Check, which is used across England and Wales as an annual review of health by general practitioners.
Professor Kerr studied medicine in Bristol (UK), General Practice in York and Psychiatry in Cardiff. He has published papers and books on healthcare, epilepsy and intellectual disability and held research grants from many funding bodies.
He is an honorary vice president of SUDEP ACTION and past chair of the International League Against Epilepsy (ILAE) commission on psychiatric aspects of epilepsy. He has been appointed as an Ambassador for Epilepsy by the ILAE and International Bureau for Epilepsy. He is also a recipient of the UK Chapter of the ILAE excellence in Epilepsy award 2019.
He is very committed to ensuring people with an intellectual disability and or epilepsy get equitable access to the highest standard of health care.
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