The Real Needs of Children With Epilepsy - Kirsten McHale, Young Epilepsy, UK

For Children's Mental Health Week meet Kirsten McHale who shares the complex needs of many children with an epilepsy, how their needs are not being met (in the UK), and how services must be improved.

Reported by Torie Robinson | Edited and produced by Pete Allen

Podcast

• Transcription

  00:00 Kirsten McHale

  “Because there is such a lack of knowledge, there's such a lack of understanding, people just think they've got epilepsy ”They're going to die!. Let's not talk about it. Let's not say it out loud because that's what's going to happen”.

  00:11 Torie Robinson
  Fellow homo sapiens! Welcome back to Epilepsy Sparks Insights.
  Now, heaps of people - patients, families and clinicians alike - will go “Huh?!” when you mention an Epilepsy Nurse. But Epilepsy Nurses are proven to be vital in the care package for many people with an epilepsy - especially for those with complex needs. I love them, personally! Today we hear from an ultra-passionate, award-winning Epilepsy Nurse Consultant whose love for what she does to improve the lives of so many children and families, emanates from our chat! We talk about epilepsy stigma, being an epilepsy nurse, and the mental health side of the epilepsies which needs far, far more attention, investment, treatment and care.
  Don’t forget to like, comment and subscribe. Your comment and like will help spread awareness and understanding of the epilepsies around the world.
  Now, onto our star of the week, Kirsten McHale.

  01:00 Kirsten McHale
  Thanks, Torie. Hi, I'm Kirsten McHale. I am a Epilepsy Nurse Consultant for a charity called Young Epilepsy based in Lingfield in Surrey [UK]. I have been an Epilepsy Nurse Consultant for [what] feels like a million years now, to be fair. But I'm a Children's Nurse from background and I absolutely love what I do.

  01:21 Torie Robinson
  Tell us just a little bit about Young Epilepsy and like what age brackets are covered and like what is “young” - I don't know (!) - and how the type of people you help - because obviously epilepsy is a really diverse disease.

  01:34 Kirsten McHale
  I'm very lucky to be able to work in the charitable sector for Young Epilepsy and we are a charity. So, we have a campus in Surrey and we have a campus that has got residential houses. We've got a school, we've got a college, we've got a medical facility, and we look after about 170 students - about half of those are residential with us. We have day students that just attend our school and college and I oversee all of their health needs. So, I manage health for Young Epilepsy. I manage the medical side of things. So, I look after everybody's health needs, as well as liaising with their external teams, as well as the parents and the young people themselves. We age range from 5 to 25. We have, it sounds a little bit random (!), but in our 60-odd acre campus, we have beautiful grounds, obviously, but the most fun things we have is a boating lake...

  02:34 Torie Robinson
  Oooo!

  02:34 Kirsten McHale
  …farm. Horticulture. And I mean, we've got donkeys, we've got llamas. And our young people get to experience all of those. So, not necessarily do they need to do academic qualifications here, they can do beautifully holistic, tailored programs that works for the individual because at the end of the day, our values are [that] our students are the centre of everything that we do.

  02:55 Torie Robinson
  That's lovely. And you, of course, students being the centre, but also I believe you work with families, right? Because they're kind of largely important and part of the puzzle when it comes to the health of these young people?

  03:06 Kirsten McHale
  They are integral in actual fact, because some of our young people have capacity, yes they do, and they can make decisions for themselves, and then lots of our young people don't, because we know that epilepsy affects people in lots of different ways - not just by having seizures - but they can have intellectual learning difficulties as well, and statistics usually show a few years confidently, I could have sat here and said 1 in 5 would have had a learning difficulty or disability. But now it's probably more like 1 in 2 people have a learning disability or difficulty. We know this now because genetics have moved on so far and the research that we do - we do lots of research here at Young Epilepsy - but the research that we do looking at different types of epilepsies and how they actually can affect you… It does break it down a little bit more. So, unfortunately, yeah, we do have a high ratio of children and young people that have other difficulties. So, parents are their voice, they are their advocate. And we try and work as closely with parents as possible.

  04:12 Torie Robinson
  Let's talk about the attention that epilepsy gets - or doesn't get - and the impact of that because we were talking before if we start recording about comparing like the epilepsy's to asthma, to diabetes, to testicular cancer and other long-term conditions. They tend to be less common than epilepsy in young people, correct?

  04:32 Kirsten McHale
  Yeah, so epilepsy is the most serious long-term condition in childhood, yet we don't talk about it. Diabetes we talk about all the time. It's, adverts on television

  04:42 Torie Robinson
  Which is good!

  04:43 Kirsten McHale
  Yeah, absolutely! But there's adverts on television all the time for diabetes. There's adverts on the television for Macmillan Cancer, there's there's adverts around these long term conditions, yet epilepsy - where there are more children and young people than have diabetes that have got epilepsy - and yet we still don't talk about it. So “Why don't we?” is one of the questions I always ask. “Why are we not talking about it? Why are we not raising awareness?” or maybe talking about understanding the epilepsies, because we have to group it together: these are these epilepsies.

  05:14 Torie Robinson
  Yeah.

  05:14 Kirsten McHale
  It's not just as black and white as “You fall to the ground, your body does a bit of jerking.” Oh, that's what people think that that's what epilepsy is. Whereas absolutely not. It's a massive part of people's lives. This is a long-term condition. So, with that long-term condition comes mental health issues, comes relationship issues, comes sleep issues, comes toileting issues, comes driving issues, comes life issues. So, when we look at the epilepsies, we need to be looking at a much, much bigger picture. But that comes with awareness, that comes with understanding. And I think we're not people like me, that's what I do all the time, but I'm one person working for one charity, whereas my charity, that's all we wanna do, is raise this awareness profile. But what do we need to do that? Do we need celebrity status? Do we need celebrities to help support us with those things? Because it seems to be that there's a stigma because people are frightened. Why are they frightened? Because they don't understand. So it's this circle of “We don't understand, so we're not gonna talk about it. But if we have a bit of awareness, we might be able to talk about it, but we still need to understand it.”. So, I think for a big part of people like us who are super passionate about raising awareness, raising, helping people to understand: that for us is key to moving this long-term condition forward. To making this a long-term condition that there are adverts on the television about. We are raising money about, so we're not just behind the scenes.

  06:54 Torie Robinson
  Because, you know, as little as many of us like talking about money, money is very important when it comes to paying for services, when it comes to paying for drugs, when it comes to paying for...whatever it might be. And I've often said that, I think governments need to kind of wake up a little bit when it comes to the epilepsies. The epilepsies costs our government - well, all governments actually - a lot of money. But they know that expenditure could be reduced long term if we invest more in certain things now, would you agree?

  07:31 Kirsten McHale
  It's about having an MP who understands or has had life experience of this long-term condition. Because if you don't and you know nothing about it, you're not gonna support it, you're not gonna advocate for it. So, in my experience, and I have been involved with parliament before, I was at the launch of, when Young Epilepsy launched their passport that they had - we were creating a passport for young people, so they could (in collaboration with the Royal College of Paediatrics and Child Health), looking at a passport that would have all their information or their data in this passport that would be easy for them to carry around. There was a big launch of Parliament for this. However, you don't find MPs backing this. This isn't something that we're talking about all the time. But why? Why again is that? Does it come back to the awareness? Does it come back to the understanding? Or does it come back to something simple as: you need an advocate? You need somebody who had this life experience to be the person that pushes this forward.

  08:31 Torie Robinson
  What do you think the answer is?

  08:34 Kirsten McHale
  I would like to think that if someone had personal experience, or, even if they spent time, it would be eye-opening for them. I'm quite lucky because I linked it nicely to Jeremy Quinn, who is my, is my MP for my local area, and I won an award.

  08:57 Torie Robinson
  Yes!

  08:58 Kirsten McHale
  Back in 2016, for best practice, and I was lucky enough to be contacted by Jeremy Quinn's office and he met me before the awards in London and took me around Parliament. I had a 1-to-1 with him for several hours, in fact. And it was enlightening. I found it really reassuring that he listened, he understood, he's our local MP, he knows about the organisation I work for, he knew about what we provide here. So it's having that insight, I think, makes, makes someone wanna stand up and fight your corner.

  09:38 Torie Robinson
  So, has this chap, this MP fought your corner, our corner?

  09:44 Kirsten McHale
  He did at the time. But then I think like everything, you know, they move on to other things that they have to, they have to do.

  09:51 Torie Robinson
  What's quite frustrating is we know that there are so many people affected by the epilepsies, including some politicians!

  09:58 Kirsten McHale
  I don't even think you need to be in a position of power Torie. I think people hide behind it because the stigma is so real. Because again, people are here. They've got an epilepsy and because there is such a lack of knowledge, there's such a lack of understanding, people just think they've got epilepsy ”They're going to die!. Let's not talk about it. Let's not say it out loud because that's what's going to happen”. And actually we know there is about 600 epilepsy related deaths a year of the whole population. And about half of those are children or young people. When you compare that to statistics, like there are 2000 asthma related deaths a year…

  10:35 Torie
  Right!

  10:36 Kirsten McHale
  …this is a tiny, tiny, tiny amount. But if people were to actually look at places like SUDEP Action, for example, I mean, they've got a brilliant website. It talks openly and honestly about death around epilepsy and checklists. But they've got an adult checklist already and they're just about to launch the paediatric one. So, this is a really good tool for families to use.
  So, the Epilepsy 12 audit: I got my job eight years ago at my local district general hospital where I set up a dedicated paediatric service because there wasn't one before, but off the back of the Epilepsy 12 audit, they needed to have one and they needed to have an Epilepsy Nurse. So, to get that role, I got it through the back of that audit. So, again, the audits still show us that we have not got enough Epilepsy Nurse Specialists. And why we haven't got enough epilepsy nurse specialists is again, there isn't the training, there isn't programs around that are enticing people into Epilepsy Nurse Specialist roles. Again, this is a long-term condition that's super, super complicated. You've got to know your staff. So, I advocate for Epilepsy Nurses all the time because I'm more than happy to help and support people in any shape, way or form, I'm really, really keen. I work closely with other organisations to help create programmes that we can help Epilepsy Nurse develop. I mean, epilepsy nurses are invaluable, we know that, but it also comes down to money. Nurses are notoriously not paid very well. We're asking to be paid a decent wage for being… having a bit of academic behind us. So, to be a nurse to get a degree, it's expensive, then we're “banded”. So, you've got to work a long time to work your way up your bandings. And then if you're asked to do more, so you're asked to become a Prescriber, you're asked to become a nurse consultant, you've then got to get a Master's degree to do that. And you're still not paid in accordance as if you balanced your job role with somebody that worked in the City [of London] or in banking or in something else. We still don't have that correlation. So, what's enticing people into healthcare? Not much, but only because we care. We want to be in healthcare because we care! And so notoriously, care doesn't pay very well. So, to become a specialist nurse, you've got to do quite a lot of work yourself. But, the reward you get is a reward from looking after the families, looking after the young people. That's the biggest reward. So, people go into these jobs because they care, but there are pathways. There are definite pathways. Universities have certain pathways for nurses, children's nurses, adult nurses, learning disability and mental health. But these pathways you can choose to go off and specialise once you've got your fundamental, your basic knowledge base.

  13:27 Torie Robinson
  I completely agree. When it comes to the mental health of people with an epilepsy, this is something that is completely, it's not addressed enough because we don't have the capacity for it, or it's not seen as priority for many clinicians out there, or it's not recognised as one of the key symptoms actually of an epilepsy many times or as a morbidity associated. So, when it comes to mental health, do you think that mental health trusts need to recognise that this is a serious condition or disease that incurs almost or causes many, many different types of mental illness that need to be addressed?

  14:04 Kirsten McHale
  For me, mental health is something that we do not address anywhere near as much as we absolutely should. Mental health problems go hand in hand with having a diagnosis of epilepsy, especially when you're hitting your pubescent years, your early teenage years, your body's going through changes, you're going through hormone changes. We've just given you this diagnosis of epilepsy, the stress alone that can cause, let alone the seizures, the impact of the seizures, and then the drugs that we give you to stop the seizures, also cause mental health problems as well. So, there's a big picture, there's a very big picture. And what we fail on miserably is being able to support children, young people, young adults with mental health problems because there aren't the services to look into and there just aren't the services available. If you're looking at trying to refer somebody for CAMS, for example, what have you got? A year to 18 month waiting list for that! We ask to see psychiatry, there's no psychiatry. Is there psychology? No, there's no psychology. We ask parents to pay privately. We ask them to… we push back to schools and we say, oh, schools have got counsellors now. So, maybe schools are set up and school counsellors are not set up to talk to you about mental health issues related to your epilepsy diagnosis, related to all the things that are going through your mind as an individual. You're thinking… a lot of my young people have told me over many years: you're dealing with all of these things, you're dealing with seizures, you're dealing with being incontinent in front of your classmates, you're dealing with not being able to go out by yourself, your loss of independence, you might not be able to drive when you get a little bit older, and we've given you these drugs that are dampening down your personality, they're dampening down that overexcitability of your brain to stop your seizures, but that dampens you down as a person.
  Depression and anxiety go hand in hand and what do we do? We say, well, let's give you some antidepressants. I mean, is that solving the problem or just popping a plaster over the top of it? So, because we don't have the capacity, we don't have the amount of clinicians to say where are the psychologists, where are the psychiatrists, where are these people? There aren't enough. They're burnt out. They leave the NHS, they go and work privately. So, if you want to see them, that's going to cost you. That's going to cost your family. And unless you've got private health insurance, these things can be expensive. But they're also vital because a big part of the epilepsies and drugs and depending on where your seizures come from and the impact of the drugs, suicidal ideation, depression, anxiety, all of these things, self-harm is a very, very real thing, but we just don't talk about it enough. We can signpost people to Mind website, Young Minds. We can signpost people to the text, or you can just send a text and somebody will get back to you via text. But that's not enough. That's not enough for you to sit and have talking therapy. How do you feel today? “Actually, I feel rubbish today because I've had three seizures overnight. I'm completely knocked off. I've bitten the inside of my mouth. My tongue's all swollen. I haven't been able to eat or drink properly. And I've now got to go to school and face all my friends.” It's...Mental health is huge.

  17:26 Torie Robinson
  With people's support and people getting behind us, and by people, I mean, people [who] are not affected by epilepsy as well. I think there's some stuff that we can do and people can get involved. This is in the UK, obviously, but in the APPG and try and, you know, speak to your own MP about it. And say that this is really, really important because this, when people are going through something like that you just described, again, it doesn't just affect that person, it affects their family, it affects the employer, it affects their mates.

  17:55 Kirsten McHale
  And it's about awareness, isn't it? It's about understanding. It's about champions. It's about being a champion for promoting, talking about epilepsy, and how we can help and support moving forward. I'd like to see, within my career, that there are, there are psychologists in every single clinic, in every single hospital, that can be patients, families can be referred to. I'd love to see that happen in my career.

  18:20 Torie Robinson
  I think it's important to note that lots of people will have, who have completely controlled seizures will also experience these mental health issues.

  18:29 Kirsten McHale
  Yeah, absolutely.

  18:29 Torie Robinson
  Right, having your seizures controlled, okay, that's a good thing, but that can often come at a cost and it doesn't stop, necessarily, the worry.

  18:37 Kirsten McHale
  Yes, it can affect everybody. Yes, you can have well controlled seizures, but you can still have side effects from medication:, very, very real thing. And the side effects from medication, they're listed as many, many, many of them, but also can be a contributing factor.

  18:52 Torie Robinson
  A massive thanks to Kirsten for sharing with us the complexities of the needs of many children with an epilepsy and for the motivation to help more people in the same way that she and her team do!
  Again, if you haven’t already, don’t forget to like, comment, and subscribe, and see you next time!

• About Kirsten

  Kirsten McHale is a Nurse Consultant for Epilepsy at Young Epilepsy in the UK.

• Links to Kirsten

  X/Twitter: kirstenmchal

  LinkedIn: kirsten-mchale

  St Piers: meet-our-team

  Best Practice Award: Best Practice Award - FB

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