What Does An Epilepsy Nurse Do? - Neil Williamson, Epilepsy Specialist Nurse, UK
Epilepsy Specialist Nurses provide a key part of the care package for people with an epilepsy. Hear of the value of flexibility and going above and beyond required, by Neil Williamson.
Reported by Torie Robinson | Edited and produced by Pete Allen
Podcast:
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00:00 Neil Williamson
I, I sort of think: if you gave me a megaphone, I'd just walk down Catford High Street in Lewisham screaming about epilepsy care!
00:06 Torie Robinson
Fellow homo sapiens! Welcome back to Epilepsy Sparks Insights.
Now, Epilepsy Nurses form a key, highly valued part of care and treatment for heaps of people with an epilepsy. Today we chat with the cool Epilepsy Specialist Nurse Neil Williamson who works with people who have very severe epilepsies with very, very complex, profound, and multiple learning disabilities. Neil shares with us why reaching out to patients and famillies affected in this way, being flexible, and going “above and beyond” is what is needed to make a real difference to people’s quality of life.
Now if you haven't already, please don’t forget to like, comment and subscribe because your comment and like will help spread awareness and understanding of the epilepsies around the world.
Now, onto our star of the week, Epilepsy Specialist Nurse: Neil Williamson.
00:51 Torie Robinson
I love the photo behind Neil. Check it out. From a very talented member of the family, I believe. Is that right?
00:57 Neil Williamson
Yeah, my son Reese drew, painted it when he was about 18 months, two years, and it accidentally (I think I assume accidentally!), became a brain. So it's, it's what I look at every day, it always reminds me about my job and the fact that people have very different brains.
01:09 Torie Robinson
So what is your job? What do you do?
01:11 Neil Williamson
So I have been a children's nurse for about 23 years, I think, at last count, and I started, wanted to be a Cancer Children's Nurse because my nephew had cancer and then I went to a brain injury rehab unit and became a brain injury nurse and loved neurology and fell in love with people with brains cuz,I love, like people that are a bit different. And I enjoy the thing about neurology about helping people and kind of looking at solutions of how they can better improve their quality of life. Then I worked in neurology in a big hospital in London, and then I became, I worked in a hospice, and I became a Young Adult Transition Lead in East London and I set up a service for young adults moving from childhood to adulthood with very complex needs; lots of them with neurological problems. Then I became a Tourette's Syndrome Nurse Specialist, then I became an Epilepsy Nurse Specialist in South London. And now I run a training business, and I work as a clinical trainer. So yeah, that's what I do. And I was designing computer games before that. So I'm very, yeah, a bit “off the wall”!
02:14 Torie Robinson
And you also play a role with Dravet UK, I believe. For those who don't know, Dravet UK is one of the leading organisations for the rare epilepsy Dravet Syndrome, right?
02:24 Neil Williamson
So, sodium channel mutation SCN1A epilepsy, genetic epilepsy, and yeah, I've been a Trustee (I was on the Medical Advisory Board and I became a Trustee) and it's an amazing charity that helps a lot of families who live with very, very serious epilepsy.
02:36 Torie Robinson
So with your current private business, I guess you have the flexibility to go around and see individual families and people with an epilepsy.
02:44 Neil Williamson
So I think it all started with me being asked to go and visit a girl, and another, a young girl with epilepsy in part of the country to talk to her parents about epilepsy. They didn’t feel they had a lot of epilepsy input and they wanted to have a chat and talk about things and look at care planning. And then their manager (their Case Manager), spoke to another Case Manager who then rang me and said “I hear you're really good, would you come and speak to these people because they don't have any epilepsy people either!”. And I suddenly realised that actually, like 70% of the country, I think around 70 / 74% of the country has a Paediatric Epilepsy Nurse Specialist (at the last national audit). But actually, we still got like a quarter of the country that isn't covered! So then I started to realise that actually, wow, like, maybe there's a role for someone like me who's got the expertise to go and help families who haven't got an Epilepsy Nurse. So that's kind of the basis… and then the pandemic… and then back to the hospital for a bit, and then, yeah, that's been ongoing. So lots of training of carers, lots of training of families, sessions with siblings (about how they feel about their brother or sister’s epilepsy I guess.
03:47 Torie Robinson
How do you divide your role then? So, is it kind of like a “per case”/”per family” basis where you speak to, you often liaise directly with the patient (if they're able to communicate effectively - because obviously some people are nonverbal, right?)?
04:01 Neil Williamson
Absolutely. So a lot of, a lot of the children that I do - by the nature of who would employ me - have children that have very, very complex, profound multiple learning disabilities and very severe epilepsies, and wouldn't be able to have that discussion necessarily or even be old enough to - because a lot of them are children [although] some are adults.
So basically cases are brought to me by Case Managers who work with these families and then they ask me if I'd like to, if I can get involved, and if and what work they want me to do. So sometimes it's initial assessments and just looking at like the house, looking at risk and safety, talking about what epilepsy looks like and how we should be supporting people with epilepsy to really try to get them to be brave about doing stuff. Like we talk about a lot about, you know, making sure that people aren't “not-doing” things because they think they shouldn't (because they've got epilepsy) and actually doing stuff - because actually you can do most things.And I think people sometimes just need someone to say that.
And like, yeah, then Care Planning, maybe there's training sessions for carers and parents and for brothers and sisters and stuff, and other family members; nannies, grandads, that kind of stuff…au pairs, nannies, you know, whoever really like… because in my NHS job, I was the same, right: is that I found lots of nurses who were like “Well, I will train the family and the school but I will not train anyone else! Anybody!” and I’m like “What do you mean?” “Well, I'm not going some Scout group!” And I and I sort of think “Well hang on a minute: the child goes to Scouts, right?! The child wants to go to Scouts! The child has the right to go to Scouts. The child should go to Scouts! Okay! So if that means that's me, or someone like me has to go to the Scout team leaders and meet with them and go ‘This is Buccal Midazolam, this is what you do.’ then that's what we do, man!”
Like, this is a holistic job. The job is not to just get them in and get them out. This is not surgery. It's not some surgical procedure where people come and go. This is about the person's life at the very core. What is going to help them live the best quality of life? And if that means I've got to cycle somewhere 9 miles away to go see someone at the wrong time, I'll go do it. Because that, if that's the thing that unlocks their ability to go and do something, that's what we're doing! So, to me, I was more of like “I'll do a few hours today, and then because I'm going somewhere to talk to people tonight”, or I'll go [to] you know, universities, employers, clubs, whatever. Because you've got to go where the epilepsy is.
06:30 Torie Robinson
Which is kind of everywhere really, right?
06:31 Neil Williamson
Right, of course! So what it is is people sit in the hospital and go “Okay, I'll wait for them to come to me.”.
06:39 Torie Robinson
Hmm.
06:40 Neil Williamson
That's reactive. So you're waiting for them to have a seizure before you meet them.
06:44 Torie Robinson
Hmm. And it's not productive because it's not all about seizures.
06:46 Neil Williamson
Exactly. So the point is you might have someone with epilepsy who never comes in the hospital because they're really well controlled, or they still need help, right? So I was always sort of outward facing, which is like, I'm in the hospital, but I want to be out there because that's where life is. So I wanna go out there and go to all these places and meet all these people and teach all these people stuff. You know, I, I sort of think: if you gave me a megaphone, I'd just walk down Catford High Street in Lewisham screaming about epilepsy care.”.
07:11 Torie Robinson
I'll join you, mate. That's fine. Yeah.
07:13 Neil Williamson
Of course you would, of course you would! We should all do that. Because in the end, everyone, I guarantee everyone knows someone who's got epilepsy, whether they know they've got epilepsy or not, right?
07:20 Torie Robinson
Right.
07:21 Neil Williamson
So the point is, like with my work now: if someone came to me and said, “Neil, we are a charity organisation and we really want some help”, I would do everything I could to help them. And whether that would - you know, I'm not saying like, there are times when I haven't been paid for stuff, there's times when I work out really big discounts, you know, whatever. In the end, I want to improve people's quality of life that live with epilepsy and complex needs. And I want to do that. Now I have to earn a living, so I do that, but I'm always keen to make sure that I'm still being “humanidocious”. And like the Trustee thing with Dravet [UK], you know, to me, people are people, the job is to get people with epilepsy better care. So that's where I'm at.
08:01 Torie Robinson
What do you find is one of the biggest challenges in your role? Is it finding the families that need the most help? Is it politics? Is it money?
08:12 Neil Williamson
It is time.
08:15 Torie Robinson
Right.
08:16 Neil Williamson
So, again, if you look at the private thing versus the public thing, right: so I would always try and spend as much time with the families as needed it in my NHS job, but of course, I had a lot of, I had like 400 children and I had four days a week! So there was a lot going on there. And clinics and things.
Whereas actually my private work’s like: “Oh, you'd like to see me for the day and I'll come and we'll spend six hours talking about your child's epilepsy. If that's what we need to do, that's what we'll do!”. So that meant that, you know, so time is a massive factor. It always is, right?
Secondly, playing with others. So the problem is, is this is a team sport, right, (supporting someone with medical stuff). So you need to be able to pass the ball off to various people to say “Your turn, this is your bit.”. And so in teams where you've got that, that's fantastic. And where parents play very active roles or are able to play very active roles. So the teamwork thing's important. And sometimes being independent, people are a bit less willing to talk to you and work with you because they're a bit like “Oh, well you're not NHS…”. It's really interesting. People say to me every day “Oh, who do you work for?” I say “I don't work for the NHS”. And they all go “Oooh..”.
09:23 Torie Robinson
“Ummmm!”
09:24 Neil Williamson
“Oooooo! He's a nurse who doesn't work for the NHS…” People said to me “Oh, are you striking?” “I'm an RCN nurse, I'm a Royal College of Nursing nurse, but I’m not, I don't work for the NHS.”. I don't believe in that, firstly, but secondly, I wasn't working for the people that were having the strike because I'm not paid by the NHS, I'm not paid by the government, I'm paid by other situations. I was [paid by the NHS in the past]. So the point is, is like, this is about new healthcare as well: so as healthcare moves on - because things are changing - it'll be a question of looking at what that looks like.
So time, resources are a massive factor here. And this is where the epilepsy charities are really helpful, you know, giving us free publications, free leaflets, giving us lots of their time and doing lots of research. But yeah, time, resources, teamwork. But other than that, you know, it's attitudinal.
I worry a lot about the people I do not see. So as you've always got loads of people who are going “We wanna talk to you, we wanna talk to you, we wanna talk to you!”. It's the 80-20 rule: you spend 80% of your time with 20% of your patients. Not because they're the most severe, but because they're the ones that can speak up.
10:32 Torie Robinson
Right.
10:33 Neil Williamson
So what you gotta do is try and advocate for the people that can't [speak up]. So when you've got someone who doesn't speak English, when you've got someone who isn't able to access, who isn't able to get on the bus and come to the hospital, who isn't able, they're the ones you cycle to their house with an interpreter - not with the interpreter on your bike - and then you go (unless they’re tandem), and then you go “Okay, let's do it.”.
So I think… I'm a lover of creative thinking in the sense that if there's a problem in front of me, I like to smash through it. So I'm a great believer that reaching hard to reach people is a really important part of our job to create equality in healthcare. Because otherwise we're not being equal are we? We're just sitting waiting for people and that's lazy. What we need to do is allocate time to make sure we meet the needs of the most difficult people.
I rode to a kebab shop once to see a dad who refused, who couldn't come to clinic because he worked really hard …
11:22 Torie Robinson
I thought you were going to say because he was getting a really decent kebab he had to wait for.
11:25 Neil Williamson
Well, I was hopeful! The key thing is, is I like, cycled like 12 miles into North London to go and see this guy, on my bike, to go see him and say “We need to talk about your daughter and her epilepsy.”. So we went and had a chat about it. And that was the most meaningful thing because that was the missing piece of the puzzle: was he just couldn't get on board with what was happening. It's very complicated, and he needed someone to front up and say “Let's talk. And I'm not giving you the opportunity to hide behind work (or rightly be at work)”. So I just went and we had a long chat in a private room and that really helped. So I think you've got to, it's attitudinal, you've got to be willing to look at the problem and say, how do I solve it? And how do I use my own resources to get there?
12:26 Torie Robinson
Well, I love that attitude and no doubt that is helping you reach out to those who sometimes need the help the most because they can be the quietest. The families can be the quietest.
12:14 Neil Williamson
Absolutely.
12:15 Torie Robinson
And we mentioned briefly in our chat before how, you know, we don't want people to be quiet and, you know, often unintentionally and then get worse, their health get worse. You need to see them the earlier, the better.
12:26 Neil Williamson
And bear in mind, that very often, when people with really bad epilepsy are having a really bad time, that's when their families don't have a chance to say “I'll ring, I'll do this, I will write that email I've been meaning to write, I'll do that letter.”. I know from having three children that I'm often under “a pile of”, that actually trying to get anything conducive done when you're meeting the immediate needs of someone... And so actually, if you've got a professional who's proactive and says “Hey, you know what? I saw that that child came to A&E the other day…” So I used to get like a weekly list from the hospital, right, that I asked for, and then I would ring up and go “Is everything okay? Are you all right?”.
13:01 Torie Robinson
Aww, so proactive.
13:03 Neil Williamson
Or like, you know, and people like, text conversations. Because in the end, however people communicate, as long as you know they're there… You know, raising your flag and saying “I'm here, speak to me”, is one thing. If you have the ability to be able to go out and actually go to people and knock on the door and go “I'm here, this is me, if you need me, I'm here. And if you want me to come to you or you want to come to me, then let's do that. But just get in touch.”. So I think it's really good to open yourself up in lots of ways and understand that not everyone has the ability to just get up and come to you.
13:33 Torie Robinson
Thank you to Neil for making us giggle but - rather more importantly - providing us with insight into the many responsibilities of an Epilepsy Nurse and the benefits that they bring to the lives of people and families affected. More health trusts, hospitals, and insurance companies need to recognise and value the Epilepsy Specialist Nurse, because: they are invaluable! Again, if you haven’t already, don’t forget to like, comment, and subscribe, and see you next time!
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Neil Williamson has been a paediatric nurse since 2000 and works in the field of epilepsy neurology, learning disabilities, and palliative care. He has worked with countless children, teenagers, and families to improve their symptoms, care, and quality of life.
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LinkedIn: neil-williamson
Dravet Syndrome UK: neil-williamson-trustee
Epilepsy Explained: Our Team
Hope For Epilepsy London: neil