Why We Need Epilepsy Nurses! - with Epilepsy Specialist Nurses Ludivine Rohrer (France) & Patty Shafer (USA)
Epilepsy specialist nurses (ESNs) play a multifaceted role…! Hear all about it from ESN’s Ludivine Rohrer and Patty Shafer who share their responsibilities in patient care, education, and psychosocial support. They also provide insights into the challenges faced by patients and families trying to manage an epilepsy (including all symptoms and morbidities) and emphasise the importance of personalised care for everyone. Transcription and links to Ludivine & Patty are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Patty Shafer
“The first thing I think it's so important for nurses is to really assess what the patient already knows. And what does their family already know.”
00:10 Torie Robinson
So, what is an epilepsy nurse? What do they do? Not everyone knows even of their existence - and I sure didn’t until I was being considered for surgery! Well, today, we hear from some of the most globally influential epilepsy nurses - Patty and Luuuudi-veene. If you haven’t done so already, please do like and comment on this episode, and subscribe to our channel, so that we can get way more people around the world learning about the epilepsies!
00:34 Ludivine Rohrer
I'm Ludivine Rohrer. I am an advanced practitioner specialising in epilepsy and I work in a university hospital in Nancy in France. I work as a clinical expert in nursing care because I work in a monitoring unit EEG monitoring unit and we do some surgery. So, I can see some people with epilepsy for the follow up.
01:14 Torie Robinson
And is this for children or adults?
Ludivine Rohrer
Just adults for me. So, I can do their education…
01:24 Torie Robinson
Or all their sort of needs, like the care-wise you mean?
01:25 Ludivine Rohrer
Yes, all their needs, yes, nursing care, also in their comorbidities, I can give us some support with the psychosocial aspects and with the troubles in mood.
01:43 Torie Robinson
Oh, so like mood disorders, cognitive dysfunction. And I heard that… I heard through the grapevine that quite a lot of your… the people that you care for have DEEs or developmental and epileptic encephalopathies?
02:00 Ludivine Rohrer
Yes, we are also a unit who is in charge of rare epilepsies. So, I can see some patients with rare epilepsies and support the families with the issues they can have with this sort of epilepsy.
02:19 Torie Robinson
What are common issues or common morbidities that they might have?
02:22 Ludivine Rohrer
Often, it's not the number of seizures which is the real problem. It can be the behavioural troubles or… it can be the main problem, in fact. And the seizures; the family learns to live with that but when the behaviour is a problem, it can be more hard and difficult.
02:47 Torie Robinson
And the behaviour, I suppose, does it relate to seizure activity or neurological abnormalities?
02:55 Ludivine Rohrer
No, all the time, yes.
02:58 Torie Robinson
So, not for the family - well, and the patient - not being able to predict mood, that must be really quite awful.
03:02 Ludivine Rohrer
Yes, it's really a difficult problem to say that this sort of person is in a “bad” mood or not. the family is the most important person to ask because she's the right one who knows the patient the best.
03:24 Torie Robinson
I've heard that other common morbidities - and this isn't just in people with DEEs - but could be sleep disorders, intellectual disability… more so in DEEs, correct?
03:36 Ludivine Rohrer
Yes, right. They can have a lot of sleep disorders and the nurse could be the good one to speak with the family, so, as an epilepsy nurse, you can be the good person for the family to support us and improve the quality of life.
04:02 Torie Robinson
Wonderful. Well, that's why one of the key reasons I appreciate you guys as well, thank you. Okay. So, going a few thousand miles away - thank you, Ludivine - to Patty, based in the US. Tell us about yourself and what you do!
04:17 Patty Osborne Shafer
Hi, thanks very much, Torie. I've been an epilepsy nurse at an epilepsy center in Boston, Massachusetts, for over 35 years. And I've worked with people with epilepsy all the way from epilepsy might be their only problem to epilepsy plus multiple other problems, or it's affected their life in many ways. But I come at it from another perspective too, because in addition to working at an epilepsy centre, I had worked at the Epilepsy Foundation, which is a kind of patient advocacy organisation of the United States. So, I've done some consulting on the side and now working with the nursing section of ILAE; to kind of help enhance the visibility and education for nurses. But the other thing that I think about here is, really, how does it affect the individual and their family - because I've lived with seizures all my life and then my son had seizures for a number of years. So, we were lucky that they've been pretty well controlled. But when I look at what a nurse can do and that importance and value of the nurse, I'm kind of bringing a kind of a multiple perspectives to that.
05:23 Torie Robinson
Well, that's very valuable to the people with the epilepsy because… well, I know, actually, several scientists who have epilepsy, but they're not open about it (and I'm sure it's the same with more clinicians). So, it's wonderful to have you say that I've got this personal experience and it really can contribute to the empathy you have for people.
05:43 Patty Osborne Shafer
The nurse or doctor or social worker, whoever it is that has epilepsy; I'll make a bet that they went through a lot of the same problems as a person without that because it does take a while to get the right information and then to process that of “What does that mean for me as an individual?” and not what I think “What does my cognitive, my knowledge base think about epilepsy? in general?” versus “What does that mean for me?”. So they've probably been working through (in the past or currently) the same issues that anyone else with epilepsy has.
06:17 Torie Robinson
Totally. And what are the sort of things that you talk about and advise patients?
06:22 Patty Osborne Shafer
The first thing I think it's so important for nurses is to really assess what the patient already knows and what does their family already know. Because by the time they're seeing a doctor or they see a nurse, you assume that they've been taught a lot or someone has discussed these things all the way from:
“What's a seizure and what do I do if my loved one has it?”, to;
“Could I die during a seizure?”, or;
“Why do I have to take this medicine?”, or;
“Why are they talking about surgery?”
So, we make a leap a lot of times to talk about these big topics and people haven't had some of that basic information.
07:00 Torie Robinson
Mm-hmm.
07:00 Patty Schafer
So, I never wanna skip over that. I really wanna start at
“Where is that person at and how much do they know?”
“And what do they need?”
“What are their priorities?”. You know;
“What's top most on their mind first?”.
07:13 Torie Robinson
And also, often, I think, that we - the people with the epilepsy but also the caregivers - will often be so stressed when we see a clinician; that you can tell us something and then we forget it anyway. It's not necessarily, you know… they could have - a clinician could have noted - “Okay, we spoke about ‘this’.”. But I think one of the responsibilities is ([which] you kind of just implied Patty), is that you have to find out; well, do you actually remember it? Do you understand it? Cause maybe we don't.
07:36 Patty Osborne Shafer
You might see a nurse or doctor or whomever it is for 15 minutes, a half hour, an hour, even if you see him for an hour(!); that doesn't mean it's going to apply when you get home. When you get home, you need to remember it, and then you need to think about, how am I going to work that into my life? So, I think it's so important we write things down, we give them resources. Because they've got questions and issues that we can't address in those short visits.
08:07 Torie Robinson
Mm-hmm.
08:07 Patty Osborne Shafer
So, I mean, for me, a nurse means being aware of the whole person and what other things are out there that can help them and don't think that I'm gonna be the be everything for that person. I can only do this much.
08:22 Torie Robinson
So again, it's looking at them as a whole, as an individual, looking at what's around them, like their family or social, you know, areas, and then talking about the things that nobody else will talk about or they don't feel comfortable talking about.
08:34 Patty Osborne Shafer
I think that's so important. I don't know how many times someone might have gotten along the way... Just to get an example: maybe they're still having seizures and so all of a sudden, someone's talking, you know, a physician's talking to them about surgery or an implanted device, and when you really sit down with them and talk about their life and how are they doing, you find out:
they don't like the medicine that they're on, or;
they're having trouble remembering it, or;
a lot of stress in life that's affecting their seizures.
And if you can address those core issues, maybe surgery or a device isn't really the route for them, or at least for now. So, those are the things I think a nurse can really spend some time and tackle.
09:05 Torie Robinson
I see you agreeing with that, Ludivine. Is that right?
09:09 Ludivine Rohrer
Yes, because I was thinking about a girl that I saw the week before. She's young girl of 12. We were talking about surgery and something like that. And in fact, when I talked with his parents I saw that there was a lack of adherence with the treatment. Yes, because she's a young person and the parents are not there in the morning, so, in the morning the treatment was not...
09:48 Torie Robinson
She was not taking it?
09:49 Ludivine Rohrer
Yes, and so, if we talk with the parents, the person, you can learn a lot of things and you can change the way
10:07 Torie Robinson
How life is going - in real life?
10:09 Ludivine Rohrer
Yes.
10:09 Patty Osborne Shafer
Yeah, good points!
10:12 Torie Robinson
Well we are going to have an episode 2, aren’t we guys; because we were going to have an episode 1, just to talk about the upcoming ILAE-IBE conference coming up - so, everyone check that out - but just to give people a taster, what are we doing at the conference in Lisbon coming up?
10:30 Ludivine Rohrer
So firstly, we will have an update on nursing symposium, which is scheduled on Sunday afternoon. So, the main topic will be “individualised nursing care for people with epilepsy”, promoting education and self-management. So, you will be our first speaker, Torie! Yeah! Hahaha!
10:056 Torie Robinson
Don't clap yet! Oh my god! Haha!
10:58 Ludivine Rohrer
And we will have a lot of nursing and caregivers from all over the world. So, they will present their point of view from different perspectives and what nurses can do to help.
11:19 Torie Robinson
Yep…
10:24 Ludivine Rohrer
And we will hear from a nurse from UK and also a nurse from Kenya; a country where the difficulties are necessarily completely different and they will talk about the self-management and the health disparities.
11:35 Patty Shafer
We've got a couple other sessions going on. And so one is going to be, you know, we talked earlier about the tough topics. So, one of them is how to address the emotional and behavioural aspects of epilepsy, that it can be very complex, and it's manifested in different ways. So, we want to do this from the nursing perspective. And the whole approach that we're taking is that this is education for nurses by nurses. And we have other healthcare professionals helping, but we're trying to frame it around the way nurses see the needs or what we can do. And so in this aspect, we're looking about how's emotions and behaviours, what's causing them?
12:17 Torie Robinson
Mm-hmm.
12:17 Patty Osborne Shafer
How is it manifested? And then looking at it; how is it managed in the outpatient setting? Or what are some of the more common issues and how does that vary in different regions? And then, kind of one of the unique issues that's a challenge for nurses is; when you bring someone into an epilepsy monitoring unit, you're asking them to have seizures, you're taking away their medications, and, of course, moods and behaviours are gonna change. And it can often present a very challenging issue for the person, for their family, but also for the nurses and doctors caring for them. So, we're gonna talk about what the issues are there.
12:53 Torie Robinson
Thank you to Patty and Ludivine for sharing with us a little of what Epilepsy Nurses do and their value! Do get ready to hear about our talks on epilepsy nursing at the upcoming International Epilepsy Congress 2025 in Lisbon in next week’s episode!!
Check out more about Ludivine and Patty at the website torierobinson.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 the episode, and subscribe to our channel so that we can get way more people, around the world, learning facts about the epilepsies!
See you next week!
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Ludivine is an Advanced Practice Nurse in Chronic Diseases, specialising in epilepsy care. Thanks to her Master's level training, for people with an epilepsy she ensures clinical follow-up, the coordination of their care pathway and is also involved in the implementation of the education program. This experience, combined with a long career as a registered nurse, allows her to speak as a nursing expert during training courses and webinars.
As Vice-Chair of the Nursing Section of the International League Against Epilepsy (ILAE), Ludivine promotes nursing care in epilepsy. As Europe representative, she is also the liaison for epilepsy nurses from European countriesLinkedIn Ludivine ROHRER
ILAE ludivine-rohrer
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Patricia Osborne Shafer, RN, MN, is a neuro/epilepsy nurse specialist and nurse researcher at the Comprehensive Epilepsy Program at Beth Israel Deaconess Medical Center in Boston and an instructor in the nursing program at Emmanuel College.
Since 1992, she has served as a professional adviser to the Epilepsy Foundation.
She is a member of the editorial advisory board for the Journal of Epilepsy and the external advisor for the Epilepsy Public Health Education and Health Promotion Campaign of the Centers for Disease Control and Prevention.
A person with an epilepsy herself, she also chairs the Epilepsy Foundation's Women and Epilepsy Adviser Committee and the organisation's National Cost of Epilepsy Advisory Committee.
LinkedIn patty-osborne-shafer
PubMed Shafer PO
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PubMed IPA: nursing expertise at the service of epileptic patients
ILAE Ludivine Rohrer
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LinkedIn Patty Osborne Shafer
Epilepsy Foundation Patty Osborne Shafer
ResearchGate Patricia O. Shafer