Epilepsy: Communication & Overall Health: People With 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
“If the person wants to talk about reproductive issues, you know, I might think it's a lot better for our nurse to visit the person at home and talk about them…”
00:13 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…. And, also get everyone appreciating and excited about the amazing epilepsy research that is out there!
So, this week we have part 2 with the star neuropsychiatrist Mike Kerr! Mike is going to share with us recommendations for clinicians who are unfamiliar with ID and epilepsy, tips for effective care, and always keeping in mind; the quality of life of the people affected.
00:56 Mike Kerr
Well Torie; it’s great to be here again to chat with you about epilepsy - which I can obviously talk for a long time about. 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.
01:23 Torie Robinson
Do you have any recommendations for people who, say, clinicians who aren't familiar or confident necessarily with communicating with people with intellectual disability and epilepsy?
01:33 Mike Kerr
One is that they're probably a lot better than they think they are. And they just believe that it can be done. When actually, really, a lot of the time it can't be done any more than what you've, you know… if the person can't speak, you can't… you're probably not going to be able to probably change that unless it's a thing that could be helped with the communication advice. I think, you know, the main thing is that what we know from people, quite rightly: people don't like it when they're completely able to communicate and they come into a room and the doctor talks to someone else.
02:02 Torie Robinson
Oh! That is so rude and disrespectful. My gosh.
02:03 Mike Kerr
Yeah! But the person…I'm somebody who doesn't, you know…tends to give people a chance. So, I think sometimes, some people just don't quite “get it” or sometimes, in some situations, the carer might be very dominant and it might be very hard to get a word in elsewhere apart from that carer. But obviously, start off and I, you know, obviously, I've seen probably I’ve seen 10,000 consultations of people with disability and I generally don't know how to do it! So, I just try and… you know, just try and get what I can, and then ask the person “Do you know how this works?”, you know, what's the best thing I can do what do? “What does ‘so and so’ like?” or “What can we do outside?”. And I’ve been very lucky to work with… where I work in Powys Health Authority with fantastic nurses who often know the person as well and it’ll be another angle. Because doctors, I think, are a bit daunting and professors are very daunting! And so, they can't… some of them are not daunted at all, they just tease me(!) but some of them are definitely daunted! And so, you have to use other people to help with that and I suppose it's one of these not knowing things again but recognise what not having that communication means to your decision making.
03:14 Torie Robinson
Mm-hmm.
03:15 Mike Kerr
So, there's some information pieces you won't have and you're going to have work with other people but what does that mean? Can I work with those people? Have they got the right to give this information in terms of the Mental Capacity Act? In terms of the families? Are they any good? When did they first meet the person? So, you have to work out how you use what you've got. But don't be upset, I think, that you can't communicate, because that's quite common! It's just as long as you've set up with an empathic attempt to communicate as well. Some people are really brilliant and just have a fantastic personality and cajole people along. But it is a lot of people, you know, there's a lot of non-communication in medical offices, isn't there? So, it isn't just in epilepsy or with disabled people!
04:02 Torie Robinson
Indeed, it’s like the way you are physically, the… you know, eye contact or lack of eye contact, tone, everything, patience… And actually, that's another interesting thing, isn't it (and this affects everybody, like affects clinicians, patients, families); the limited time you have often with these people affected. And I would wonder, you know, is it, you know, important to realise that you have to sometimes slowly build a relationship with the individual and sometimes their family.
04:33 Mike Kerr
You have to, well you have to slowly, and it can be quite a difficult thing if there's a particularly intense situation. Because often you'll meet in an intense situation when things are their worst. And you have to of course build relationships. What our fantastic paediatric colleagues do: they build very, very strong relationships, you know, with people over time. I mean, you can't not build a relationship, its transference, countertransference, you know, you're dealing with intense emotions with people. But I think it's a big thing and I fully understand how I'm quite lucky as I work in a setting that's quite kind to me in the time I get. I'm with a community team who are fantastic, who support. But I worked in the epilepsy unit, which was also, fantastic, but I would be seeing people probably, you know, every 10 minutes! And you had to prioritise which bit you would get out of that consultation. And that was before you had to speak for an hour about sodium valproate to everybody who's on sodium valproate. And before you had to talk about other things and you could just about get through it. So those structural impacts on people... And so, what our colleagues do is they try and use bits of their team everywhere. They'll use the nurse who will do one bit and they'll try and make the best out of the time they have to get to the same endpoint; which is somebody actually is taking part in something they know and they know what they're taking part in. So, learning disability, intellectual disability, it is a barrier, but it isn't a barrier that should stop you having treatment, and that's biggest danger, is a barrier that stops people. And I think sometimes professionals find it hard because of the complex sort of legal framework of people's consenting or not, and that makes them not sure how far you can go forward of doing something and you know… theyre not doing it on purpose, it just takes a lot of time, it'll take an hour to do something which that'd be 4 patients in clinic probably or something.
06:27 Torie Robinson
And how do you make time for that then? Like, do you and many other people have to literally go into your own time for this?
06:33 Mike Kerr
Well, I can make time but having a longer time for my appointments.
06:36 Torie Robinson
Okay, but not all hospitals grant…
06:39 Mike Kerr
Definitely, they won't all grant that and it's very poor efficiency by the hospitals to do that because you're going to save lots of other appointments in the future by having the time to sort things out. And a lot of professionals just use all their experience to try and cut things out and get to the core of the matter as quickly as they can, you know, and get to the core of the matter as safely as they can. And then, well. work with their broader team. So, if somebody comes and there's no information, I'd work with the nurses to get more information. Or if the person wants to talk about reproductive issues, you know, I might think it's a lot better for our nurse to visit the person at home than talk about them in a setting with everybody around, parents around, you know, and all that sort of thing. So, you can do it. You just have to… I think you said earlier on: you have to cut it into little bits. You can't all do it in one go. You know, it might be several consultations before you get to know... Good, good useful IT systems would be helpful if they, when they exist!
07:43 Torie Robinson
They would be fabulous wouldn't they; especially if they could connect between departments let alone trusts. Could you imagine?!
07:50 Mike Kerr
Yeah. But they can be fantastic, but it's very rare. Usually, it's just another barrier to... And of course with people with intellectual disability; the history is very important because there's a far higher chance of having had a complicated life in childhood with the paediatric services, with an epilepsy than it is with general adult services.
08:08 Torie Robinson
By “complicated” - what do you mean?
08:10 Mike Kerr
I mean, you know; being very ill children with lots of tests and lots of different drugs tried and hospitalisation, and then… but that doesn't look like the person who's in front of you when they're 18, who might have had a very good last 6 or 7 years. But that information is actually quite important, very, very important from the beginning, so….
08:27 Torie Robinson
Mm-hmm.
08:28 Mike Kerr
Families will be incredible for that, you know; mothers, grannies will be amazing.
08:33 Torie Robinson
Even siblings I bet, sometimes; if you can get them involved.
08:36 Mike Kerr
Definitely siblings. They're going to be more challenged by work, be working probably and stuff as well, and, you know... But yeah, definitely siblings. They'll be taking on the mantle for some people.
08:46 Torie Robinson
I can imagine as a sibling, sometimes, you know, how siblings can communicate in ways that sometimes it's not really cool to communicate with your mum and dad, right?
08:53 Mike Kerr
Yeah!
08:54 Torie Robinson
And so, sometimes I would imagine they could have something to contribute or sometimes, you know, different members of the family might not feel comfortable talking about certain things…
09:04 Mike Kerr
Definitely, yes. And also, in adulthood, a lot of people will be in care providers. So, families will still be often usually involved but not living with the family. So, sometimes that will also, be an important dynamic. But I think in the end you can go an awful long way and you can make a lot of decisions and it shouldn't be a problem. Communication is inevitable. And we've got lot of, you know, exciting new treatments which we have to try and deliver to people, and that, you know, that is the difficulty when you've got barriers.
09:33 Torie Robinson
By new treatments; did you have a couple in mind you could share with us?
09:36 Mike Kerr
Just to say that you know, the new drugs that are existing, the drugs, you know, for specific epilepsy syndromes.
09:43 Torie Robinson
Okay.
09:44 Mike Kerr
So, I mean, the syndromal nature thing, I'm sure you've had people talk about and talk very brilliantly about specific, extremely interesting genetic syndromes and this sort of thing. And then on the sort of cold phase, the challenges to, you know, is to get somebody set up to be able to get the best success out of such an intervention. Or, I mean, maybe not even able to be; if you're in a very small area, you might not even be able to access the medication. You might have to refer to someone else to access the medication. So, it's trying to keep that pathway going. But a of these people you see will also, who need, you know, say, with Lennox-Gastaut or Dravet; those sorts of conditions; will also, have a lot of comorbidities. So, they will need the learning disability services (in the UK), you know, to help with supporting access to health care and to support with psychology and all the other things So, it's often this… a bit of the same, you know: they need a more complicated epilepsy [team] but it's on the background of a more complicated health system.
10:43 Torie Robinson
And then there's things like digestion… I think people don't talk about enough, huge contribution to people's lives, isn't it? And even seizure frequency sometimes, as well as mood.
10:53 Mike Kerr
Well, I think a lot of people who have been quite ill for quite a long time with epilepsy and intellectual disability, people will be looking for lots of little, small gains…
11:02 Torie Robinson
Yeah.
11:03 Mike Kerr
…and probably not necessarily expecting a massive success with one treatment - although that obviously can happen even after many years of poor success. But you'll often be… and one of those little gains is in the person's general health. And now that is things like their bowels or their physical fitness or the quality of their life experience. You can never say for sure that's going to change your epilepsy, but it's certainly going improve your life! So there's nothing wrong for going for it. And you will be looking at little gains, and sometimes those little gains, you know, might just push you into a much better bit of your life. So, we work very, very hard on rescue medication plans. We don't have many people on them because it's not remotely always needed, but a very, very good rescue Midazolam plan can get your staff team feeling safe enough to bring you outside a lot more and you can suddenly have a massive change in life because you are seeing the environment and you're going out! So, it looks like it's just about… just in case you get status or some very complicated… some complicated reaction to your seizures, but it can open up doors!
12:09 Torie Robinson
Literally! Haha!
12:11 Mike Kerr
Literally opened up doors and I've certainly got people who were indoors for a long time until they could feel safe going out. And particularly when, you know, the whole change to Midazolam happens. So, if you had your fit in the supermarket - not that there's that many [(supermarkets)] around in Mid Wales (!) - but if you had a supermarket you would have someone to look after you.
12:29 Torie Robinson
So much of what you've said applies to people an epilepsy, other conditions, but don't have intellectual disability too. I think this is good advice for people all around really.
12:39 Mike Kerr
Yeah. There's very little that's fundamentally different apart from the communication - which can be difficult in anybody sometimes! And I suppose just the higher preponderance and prevalence of rare epilepsies - because they associate with intellectual disability and they associate with chronic ill health. So… and that is a very, you know, very expanding world and great for families because, you know, people are focusing on these people who are not always the focus of the most interest, you know, in terms of service provision or interventions.
13:17 Torie Robinson
Thanks again to Mike for inspiring us to improve the lives of people with an epilepsy, intellectual disability, and often much more…which can even have a ripple effect and improve the lives of families/caregivers as well.
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, schools, the person down the corner shop… anywhere! Because, this supports our mission to decrease the discrimination faced by and improve the quality of life of people affected by the epilepsies around the world. And also get everyone 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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