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Sparking interest and understanding in the epilepsies whilst bridging the communication gap between epilepsy patients, clinicians, scientists, geneticists – and the world. Hosted by Torie Robinson.
**NOT FOR CLINICAL OR PATIENT DECISION-MAKING*
Visit www.torierobinson.com & www.epilepsysparks.com.
Trailer & introduction
00:00 Matilda Modigh
“I think the epilepsy nurse can be someone, hopefully, someone you feel comfortable talking to, who knows the medical parts of the epilepsy, but also can be good listeners.”
00:15 Torie Robinson
Welcome to Epilepsy Sparks Insights! I'm your host, Torie Robinson. Now, what happens when seizures can't be fully controlled? And how can doctors and nurses help people with refractory epilepsy live better lives, beyond simply reducing seizures? Today, we're joined by epilepsy clinical nurse specialist and researcher Matilda Modigh from the Karolinska Institutet in Sweden! We are going to go into the everyday challenges of living with an epilepsy, the importance of listening to people affected, and how practical support can improve quality of life for both children and adults affected. This episode is sponsored by the Drug-Resistant Epilepsy Course organised by the Spanish Epilepsy Society - supporting education and public understanding of epilepsy.
Meet Matilda Modigh
00:54 Matilda Modigh
My name is Matilda Modigh. I'm working as an epilepsy clinical nurse specialist at Karolinska University Hospital in Stockholm, Sweden. I'm in the end of my doctoral studies, so I will hopefully become a doctor with a PhD in the beginning of December. Yeah.
01:11 Torie Robinson
You're in paediatrics, is there a specific type of person with an epilepsy that you see? Or is it do you specialise in a particular type, for instance, rare and complex epilepsies? Or is it the whole lot?
01:22 Matilda Modigh
No, I would say for the first, maybe 4 or 5 years in my career, I was meeting everyone with epilepsy. But for the last 5 years I have been specialised in the refractory epilepsy patients.
Life beyond seizures: sleep, behaviour & wellbeing
01:38 Torie Robinson
And there is too many of them right now, I have to say. So, you also, I know, work with children, we mentioned complex epilepsy, all right. So going beyond seizures, I think this is really important. Seizures are just one aspect of the life of the people affected by the epilepsy. So, what do you find are the biggest challenges faced by the individuals and their families if we take the seizures away?
02:02 Matilda Modigh
I think maybe it's a lot with the behavioural issues. Like, if you have a small kid, they have a lot of... I think for the parents it's hard to manage the behavioural issues that comes with it.
02:16 Torie Robinson
Not always though, they don't always have behavioural issues, do they? I just want to be clear, but just sometimes.
02:21 Matilda Modigh
Yeah, so, that's just an example of the behaviour issues but also the sleeping problems - that if you don't get the right amount of sleep because you are in the developing stages like you are when you are 3 or 4 years old, you don't sleep as much as you might need, and then you will get your seizures. Yeah.
02:43 Torie Robinson
Well, and it also affects your mood and also can affect your cognitive development as a kid.
02:48 Matilda Modigh
Definitely. And I think all those different aspects together is the hardest part - except the seizures. And sometimes, those parts might be more difficult for the families to manage than the seizures. And I think, as a clinician, and especially as an epilepsy nurse, the most work we put into our patients is regarding those things; to find a way for the parents to manage and to help them find a way to have or to find different solutions for it.
03:27 Torie Robinson
Or preventative measures as well sometimes.
03:30 Matilda Modigh
Yeah.
03:30 Torie Robinson
Before our recording, we were talking about how, ideally, we don't want to treat seizures, we want to prevent them and the same with the behavioural disorders or mood dysfunction.
03:40 Matilda Modigh
We want to work preventional [sic] because we don't want to add more medications for it. And if there are other ways to manage and to find solutions so you don't sleep less or you don't get upset or so, those parts are important to find a prevention work for.
04:02 Torie Robinson
And what's also interesting is that we've been focusing on the last couple of minutes on children, but almost everything that you said also applies to adults with epilepsy. Isn't that right?
04:12 Matilda Modigh
Yeah. And I would say that the difference between a child that is like 16 or 17 years of age and if you're 20 or 25, it's not more or less the same. So, if we find a way to work with it as a prevention for the older children, then we will also find a way for the adults, I guess.
Epilepsy, education & child development
04:34 Torie Robinson
And how do you find that - all of what we've just discussed - how does that affect kids in education, learning and their brain development as a whole?
04:42 Matilda Modigh
Well, if you have a refractory epilepsy, I would say that sometimes it's very hard for the children to manage to go in school or so if they have a lot of seizures. I would also say that sometimes we find it a little bit hard for the teachers and the ones in school to actually understand what seizures and especially the antiseizure medications can do for the development part. So, it's really a collaboration between the healthcare system and the school system to find a way that makes it easy for the children to be in the school environment.
05:20 Torie Robinson
And I think also the parents in that as well, ‘cause if…
05:22 Matilda Modigh
Yeah.
Long-term video EEG monitoring
05:22 Torie Robinson
…if they don't communicate well with the school or college or whatever, then it's going to be, yeah, I think sometimes they do need a bit of a poke these organisations. So, from ideally the parents as well. So, let's go to your research a bit. I know that your research explored children's experiences with long-term video EEG monitoring. What is that first of all for people who are not sure, and then what did you discover about how children experience their care?
05:47 Matilda Modigh
More or less every person living with epilepsy have done the basic EEG, but the long-term video EEG monitoring is a gold standard diagnostic procedure if you are doing your epilepsy surgery evaluation for example.
06:06 Torie Robinson
Mm-hmm.
06:06 Matilda Modigh
As you stay (or at least in Sweden) you stay in your room at the hospital for 1 or 2 or several days and you have your EEG on your head but you are also being video recorded. And in Stockholm, where I work, there is a little bit hard or difficult way for the patient to leave the room, so they need to stay in the same room for the entire hospital stay and imagine it is yeah.
06:32 Torie Robinson
Same for adults, to be honest, isn't it? Yeah.
06:35 Matilda Modigh
I think it may be just in Denmark where you at the epilepsy hospital where you can actually walk in the corridors…
06:45 Torie Robinson
Mm-hmm.
Matilda Modigh
…when you have your EEG on your head but otherwise you stay in your room and you have the EEG electrodes on and you are being video recorded to catch seizures and it was just… when I imagined being a patient attached to these EEG electrodes and being video recorded, I was just like, this must be a very difficult procedure to undergo. I wanted to speak to children and see what they thought about the procedure and if we could do anything in the hospital environment to make them feel more comfortable during their hospitalisation.
Surprising findings: what children really thought
07:24 Torie Robinson
And what did you learn?
07:26 Matilda Modigh
That was one of the great things; I thought that they were going to say that “Oh, this is one of the most difficult things I have ever done.”. But most or almost every participant said that this was the highlight of their diagnostic process because they felt like the healthcare system and the clinician and the nurse understood what they were going through and that this was a way to feel hopeful that they were going to receive the right kind of treatment. So, it was very nice and I remember one of the participants said that it was like a fantastic present to be a part of.
08:10 Torie Robinson
Oh wow!
08:11 Matilda Modigh
Yeah!
08:12 Torie Robinson
I love it when we do research and we're surprised by something. It just shows that we all have presumptions and biases. And so, when you find out something like that, it's really cool.
Is it the same for people who have trouble communicating? Or were you looking at a particular group of people who were able to verbalise their experience?
08:32 Matilda Modigh
Yeah, they needed to be able to talk to me because the research project was based on interviews with the children. So, they needed to be able to respond to questions and to be able to reflect on how they experienced the procedure.
Quality of life beyond seizure control
08:49 Torie Robinson
So now, quality of life is a huge thing. Again, we spoke about this before. Often, helping to support or treat people with an epilepsy doesn't necessarily mean controlling all of their seizures. Could you tell us a bit about that, please?
09:04 Matilda Modigh
I think most of the work we do as epilepsy nurses is more or less to make the people living with epilepsy feel comfortable with the disease.
09:27 Torie Robinson
Comfortable? What do you mean? Because like, I'm not comfortable to have an epilepsy. It does my head in, excuse the pun. So, what do you mean by comfortable?
09:25 Matilda Modigh
I would say “comfortable”, like living their life as they want to live and don't feel controlled by a disease.
09:34 Torie Robinson
How do you achieve that? That is very, very hard for many people.
Living with epilepsy: independence & everyday life
09:38 Matilda Modigh
I had a talk with one of my patients: she’s an 11-year-old girl and she was, “Okay, now I have this disease and I have a lot of seizures and my mum and dad say that I won't be able to sleep over with friends.”. And then, okay, it's not... a way to make her feel “comfortable” with the disease, but we needed to find a solution so she can stay with her friends and do everything that she wants to do, even if she has epilepsy.
10:08 Torie Robinson
So, it's about making, sort of, reasonable little adjustments sometimes to help people live the best life possible.
10:14 Matilda Modigh
So, make her feel possible to live the life she wants to live and don't feel like the epilepsy like…
10:22 Torie Robinson
...defines her.
10:23 Matilda Modigh
Yeah.
10:25 Torie Robinson
Yeah. And, also, I think it's important for us sometimes to realise that even if you don't have an epilepsy, everyone has restrictions. There are things that everybody can't do, whether they admit it or not, for whatever..
10:37 Matilda Modigh
Mm.
10:37 Torie Robinson
…reason, whether they don't have the money to do it, whether they don't have the cognitive capability or the skills they haven't learned or their environment. So, yeah, I think everybody's…. it's just that when you have an epilepsy, sometimes there are extra limitations and that's why we need epilepsy specialist nurses like you…
10:54 Matilda Modigh
Yeah.
10:54 Torie Robinson
…to help us through that and help the family (if it's a child), help the family through it. Because they can be overprotective sometimes, can't they?
11:02 Matilda Modigh
Especially the parents, for sure. Sometimes I have been in the conversation with parents to teenagers who want to sleep in the same bedroom as a teenager and then we just need to find a way for the parent to feel comfortable to allow the teenager to sleep in the other room because well, teenagers need to have some privacy as well.
11:25 Torie Robinson
I can only think of a number of awkward moments that could be if you're a kid sleeping with your parents on both sides. Gosh.
11:33 Matilda Modigh
Yeah!
Transitioning from paediatric to adult epilepsy care
11:33 Torie Robinson
So, what can adult neurologists learn from your work in this when it comes to working with the parents and the kids and making adjustments?
11:44 Matilda Modigh
I think, maybe, sometimes, when you work in the paediatric care you're used to working with the whole family because a lot of the work we do is starting when maybe the child is not able to communicate by themselves, so we always need to involve the parents and the people around the child. And when they transfer to the adult care sometimes it's like they forget that they have a network with a lot of people around them.
12:16 Torie Robinson
You mean they forget or they literally don't have the network, I think sometimes. It disappears as soon as they go into adult care.
12:23 Matilda Modigh
I think it's maybe a mix of both, because sometimes the adult neurologist and the adult epilepsy nurses don't really reflect on all the good things that the parents or boyfriend or girlfriend actually can help with.
12:40 Torie Robinson
Mm.
12:41 Matilda Modigh
That's true what you say, sometimes the network around the person living with epilepsy maybe disappear when they get older as well.
12:50 Torie Robinson
So, I guess one of our points is that that support and consistency in care, ideally, that's what we would want for people, isn't it? Not to suddenly drop off the edge and have both clinicians and parents presume that they're fine on their own. Sometimes they are, but a lot of the time they aren't, I think.
13:14 Matilda Modigh
Especially if you have refractory epilepsy, think it's hard to manage it by yourself.
Epilepsy safety, mental health & support
13:20 Torie Robinson
Imagine if you go and you're living alone and you're seizing, especially if you have tonic-clonic seizures, we have to think about things like SUDEP or sudden unexpected death in epilepsy and injury and things like that.
13:32 Matilda Modigh
And I think it's a lot of things that you forget; like cooking your own food and having a stove that needs to stop if you have a seizure (so it doesn’t turn into a fire as well).
13:46 Torie Robinson
Yeah, and also having the support for your mental health.
13:49 Matilda Modigh
Yeah.
13:49 Torie Robinson
I mean, that can be hard enough as a teenager and young adult, actually as a grown-up as well. It can be hard.
13:55 Matilda Modigh
But I think the epilepsy nurse can be someone, hopefully, someone you feel comfortable talking to, who knows the medical parts of the epilepsy, but also can be good listeners. So, maybe it's an epilepsy nurse can be a good mix of someone knowing the medical part but also is a good listener, hopefully.
14:23 Torie Robinson
I think everybody needs an epilepsy nurse. Even if you don't think you need an epilepsy nurse, especially if you have refractory epilepsy, you need an epilepsy nurse. Because, just from my experience from epilepsy nurses from around the world, it is what you described where you listen, you're empathetic, you can do this kind of… it's almost, it can be a bit like counselling sometimes, just having somebody to vent to and then you looking at the whole picture, not just seizures and then saying “Ok, how can we help improve your quality of life as well as maximise safety?”.
Fewer seizures, but at what cost?
14:58 Matilda Modigh
Yeah. And I think that's a part if we think beyond the seizures that sometimes if you are a neurologist, you always strive to get the people with epilepsy to respond to the treatment so they get seizure free. And sometimes you forget all the other parts around that you need to don't feel like you have a cloud in your head - if you understand what I mean?
15:25 Torie Robinson
Oh, yes! Too much, haha!
15:27 Matilda Modigh
Haha!!
15:27 Torie Robinson
Too much, haha, yeah
15:28 Matilda Modigh
Yeah, and there I think maybe the epilepsy nurse can be a nice bridge between the patient and the neurologist explaining like “Ok, sometimes it's ok to have 1 seizure a week or 1 seizure a month, but don't be cloudy in your head.”. And maybe that's sometimes the most or the best goal to strive for instead of having zero seizures but being cloudy in your head.
15:58 Torie Robinson
And also, not having to sometimes (not all drugs), but the psychiatric impacts of some drugs... They're not all like that, but sometimes they can affect mood too negatively. So, you want to…
16:07 Matilda Modigh
Yeah.
16:07 Torie Robinson
Yeah, like you're saying, it's that balance. You want to have as good a mood as possible, as good as cognition as possible with as few seizures as possible. it's, do you think it's a bit of a juggling act sometimes?
Matilda Modigh
Yeah.
18:18 Matilda Modigh
Definitely. And sometimes it feels like maybe the epilepsy nurse is a little bit better in feeling the different shades of how the patient feels regarding their treatment (compared to what a neurologist). Because epilepsy nurses usually speak a lot more to the person living with epilepsy than the neurologists do.
16:47 Torie Robinson
Both positions are equally important in my opinion when it comes to the care of people affected by epilepsy.
16:54 Matilda Modigh
Definitely, I just think that sometimes we complement each other.
16:58 Torie Robinson
Yeah.
16:59 Matilda Modigh
My biggest wish would be that everyone living with epilepsy would have - of course in reality is taking care of the medication and the treatment - but also that every person living with epilepsy would have an epilepsy nurse, just like you said, so they can have a person who they can talk to and feel like they listen to them.
The importance of consistent epilepsy nursing care
17:22 Torie Robinson
And so, you have a special… you put together this specialist nursing and practical support for people affected by epilepsy. So, this special clinic - we know it’s for kids with difficulty to treat epilepsy - how does that work and what have you achieved through that?
17:40 Matilda Modigh
In Sweden, it's common if you get a cancer diagnosis, that you get a contact nurse…
17:52 Torie Robinson
Mm-hmm.
17:52 Matilda Modigh
…who follows you through all the treatments if you have cancer. But in most cases if you have cancer, you will get free from it and then you will live on like nothing happened or not like that.
18:09 Torie Robinson
Well, yeah.
18:11 Matilda Modigh
Yeah. But if you have epilepsy, and especially refractory epilepsy, it's nice that if you have someone who can follow you through the whole journey; from when you get your diagnosis until you transfer to the adult care. But we didn't have that in Sweden. And my colleague who is a paediatric neurologist, Tommy Stödberg, and I felt like if you have a lot of seizures and if you are a child, hopefully you would, as a family, feel more safe if you had a team around you who followed you from the diagnosis until you transferred to the adult care, and that you have the same nurse all the time. So, every time when you call or when you write a message online you always have the same nurse respond. Hopefully you don't feel that you need to tell the entire history of your disease every time when you get contact.
Listening to people's emotional needs
19:17 Torie Robinson
It's so annoying when that happens, isn't it? We've all been there. It's so annoying. And it makes you less likely to actually contact services if you have to speak to somebody different every time. And so, I suppose going from annoying to mental health; we know, as we kind of mentioned before, that the impacts of seizure activity or abnormal neurological activity can, as well as drugs, as well as social aspects, can affect our mental health. So, how do you think healthcare professionals, other epilepsy specialist nurses, but clinicians, GPs, how can we all recognise and understand the emotional needs and support required for people with an epilepsy?
19:54 Matilda Modigh
The easiest way to understand what the person needs is to actually have time to listen and asking very open questions so that you don't put the answer into the patient's mouth. That you actually… okay, I ask a very broad question and hopefully you will also feel that you can say whatever you want as an answer and not just the answer that we want to hear. So, I think what I have felt during my years working in epilepsy is, ok, ask very open questions and invite to a conversation rather than asking small, short questions that you feel like you need to find a quick answer to.
20:39 Torie Robinson
Yeah, and then I guess, also, sometimes people might struggle to share how they feel in the first appointment, but you continue that relationship and maybe it comes out later.
20:49 Matilda Modigh
Yeah, and especially if you have the same nurse through several years, hopefully you will feel comfortable and safe to talk. Maybe not the first month and maybe not the first year, but if you have the same nurse, hopefully you will have a relationship with her or him so you feel that you can tell what you feel.
Supporting independence in young people
21:11 Torie Robinson
And going to the independence of children or new adults, like ones who don't want to sleep with their parents when they're 17 or something (such an awful thought!). How do you help them as a healthcare professional yourself; how do you help them obtain and retain independence?
21:31 Matilda Modigh
It's a collaboration between the health care worker and the patient with epilepsy and the parent to take small steps. So, if they have been sleeping in the same bedroom for, I don't know, for a few months or so, then maybe you can start using this baby monitoring. So small steps I think is the right way to go.
21:55 Torie Robinson
And also, I'm just thinking (as somebody with an epilepsy) I might actually have better sleep if I'm not with my parents. See it might actually have fewer seizures anyway and you're not stressed out being with your parents. Just a thought. You know?
22:05 Matilda Modigh
I agree. I think that would be a good solution for lot of teenagers.
Improving quality of life with uncontrolled seizures
22:09 Torie Robinson
And so, thinking about children and adults to be fair, whose seizures do remain uncontrolled, what are the most important things that people like yourself and other healthcare professionals can do to improve people's quality of life?
22:21 Matilda Modigh
I think it's… if you have a refractory epilepsy, one of the things, for sure, is to see that you have the right treatment, of course. But otherwise, I would say it's for an epilepsy nurse to be maybe the coordinator between the school system or the work that the patient is having, to make all the different parts understand what the refractory epilepsy means. Because I have met a few adults with epilepsy who say “Oh, I didn't get a job because I have epilepsy.” But if you have an epilepsy nurse who can talk to your manager and explain what it does, maybe you can also keep your job if your manager understands that it's important to be at work even if you have epilepsy.
Closing thoughts & thanks
23:17 Torie Robinson
You can be productive with reasonable adjustments and things like that. Thank you so much, Matilda. It's been lovely to have you here. We've been following each other online for ages, so I'm great that we actually got to chat this time. Thank you so much.
23:22 Matilda Modigh
Mm-hmm. Yeah.
23:23 Torie Robinson
A huge thank you to Matilda for joining us today! Epilepsy care isn't just about reducing seizures. It's also about listening to people, families and carers, recognising their individual needs, and helping them live as well as possible, whatever challenges that they face. Thank you to the Drug-Resistant Epilepsy Course, organised by the Spanish Epilepsy Society, for sponsoring this episode and supporting education and public understanding of epilepsy. And thank you for listening. See you next time!