Exposing the Epilepsies in UK Prisons - Epilepsy Specialist Nurse: Karen McLeod, United Lincolnshire Hospitals NHS Trust, UK
Did you know the epilepsies are up to four times more common in prisons than in the general population – yet many prisoners never receive specialist care? Today we hear from Adult Epilepsy Specialist Nurse Karen McLeod from United Lincolnshire Hospitals NHS Trust, who shares the stark realities of inequality, risk, and what must change.
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Episode Highlights
Higher rates of the epilepsies in prisons due to brain injury, substance misuse & mental health factors
Gaps in access to epilepsy reviews, medication optimisation & rescue treatment
Increased risks of unmanaged seizures & SUDEP in incarcerated populations
Calls for enforced guidelines, improved prison-healthcare communication & specialist referral pathways
About Karen
Karen McLeod is an Adult Epilepsy Specialist Nurse at United Lincolnshire Hospitals NHS Trust, working across Lincoln and Boston in the UK. With seven years of experience in specialist epilepsy care, she is an independent nurse prescriber, trained in VNS therapy, and passionate about tackling health inequalities in the epilepsies. Karen is a Health Inequalities Champion within her Trust and an active member of Epilepsy Action, ESNA, and the ILAE nursing chapter, where she has presented internationally.
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Trailer
00:00 Karen McLeod
"The prison population are more at risk of epilepsy. There’s a three to four times higher incidence of epilepsy within the prison population than within the general population."
Intro
00:10 Torie Robinson
Welcome to Epilepsy Sparks Insights and here we talk with specialist clinicians and researchers to spark improved understandings of the epilepsies worldwide. If you’re new here, please do subscribe so you don’t miss future conversations - and let’s get into today’s episode."
Today, I’m joined by adult epilepsy nurse Karen McLeod, who’s here to share why epilepsy is so common in prisons - and what can be done to improve care for this overlooked population.
Meet Karen
00:33 Karen McLeod
Hi, my name is Karen McLeod, I'm an adult epilepsy nurse. I work in Lincolnshire covering the Lincoln and Boston localities. I've been an adult epilepsy nurse for around seven years now and health inequalities is one of my passions. I'm also an independent nurse prescriber.
00:50 Why epilepsy is so common in prisons
Torie Robinson
And so, today we're going to be talking about people in prison who have an epilepsy. They're often quite a sort of forgotten group of people. Could you tell us a bit about that, please?
01:00 Karen McLeod
The prison population are more at risk of epilepsy. There's a three to four times higher incidence of epilepsy within the prison population than within the background general population. Main reasons are that around 40% of prisoners are known to have traumatic brain injuries in the past. There's elevated alcohol and drug use; which can trigger epilepsy. There's extra mental health problems; it's estimated around 83% of prisoners will have some degree of mental health problem which includes personality disorders, anxiety, and depression. So, there's a lot of reasons why people might have epilepsy in prison. We also have a degree of prisoners who have learning disabilities. It's estimated around 40% of prisoners still have an alcohol problem, and around 82% have drug use. And that comes from a study done by Thomas and et al in 2022, where they looked at a category B prison in the UK, housed around 850 prisoners. So, their study is… it's all focused on one prison, but it's relevant because it's a similar-sized prison and a similar category prison to a lot of the prisons that we see across the UK.
Access to specialist appointments
02:11 Torie Robinson
So another problem I understand that we can have… well, actually, this is a problem amongst generally the world, generally, but there's access to appointments with epilepsy nurses or neurologists or anybody that they might need to see clinically. Can you tell us about lack of access to care for prisoners, please?
02:28 Karen McLeod
It's estimated that around 38% of prisoners will have seen a healthcare professional regarding their epilepsy within the last 12 months. NICE guidelines say in 2022 - which was revised in 2025 - that the prison, that all patients with epilepsy should have an annual epilepsy review with their specialist. If they’re having active seizures then they should be seeing their epilepsy nurse every six months. The NICE guidelines for in 2016 for health of prisoners states that epilepsy is classed as a high-risk health condition to have, and that prisoners should have access to their specialist care team. And when they first walk through the doors of the prison a healthcare assessment is done, their medications is looked at, their healthcare diagnosis is checked over, if any appointments are in place then they should be honoured. However, we do find that in practice, staffing levels can be a problem - if a patient needs to come to hospital and needs to come with two prison guards. In my experience when prisoners have arrived for appointments in a face to face capacity, they’re handcuffed to a prison guard on each side, which is obviously humiliating for the prisoner, but it's very intimidating for other people in the hospital as well. Seeing somebody in handcuffs and chains being walked through the hospital - it's not pleasant for anybody. Also, when you have a telephone appointment with a prisoner, they generally don't know the appointment's going to be occurring. You never get to speak to the actual patient. You usually get put through from place to place to place until you finally get through to the medical officer who will give you some information - but, as the hospital doesn't have access to the prison records we can't see for sure what medication they're taking, what their regime is, what the seizure threshold… what the seizure frequencies have been, there's no descriptions of seizures. It's very difficult to manage epilepsy with prisoners, with the prison population. It is documented that there's lack of access to healthcare.
Anti-seizure medications in prisons
04:25 Torie Robinson
I understand that access to medication can be an issue, understanding what the patient actually needs and what they're experiencing can be an issue. But I heard a bit of a rumour that actually some of these drugs can be used for things other than seizure control, is that right?
04:41 Karen McLeod
Yeah, so the drugs are problematic in the prisons are the pregabalin, gabapentin, benzodiazepines - obviously, they have street value within prison. We need to be very careful that those drugs are being given to the patient for their own purposes, and it's not being traded and used for other things. So, there is a cohort of prisoners who are allowed to give their own medications and hold their own medications, but if they have any of those types of medications, they have to be given to them. And there's about a third of patients who are prisoners who have those types of medications. So, they're not always given for epilepsy; they may be given for anxiety or nerve pain, for example, but still, the same issues are there. There's also issues around rescue medication. So, prisons still use rectal diazepam(!), which is just, you know, it's just unpleasant for everybody. There's a statistic: around 76% of prisoners don't recall ever having a discussion about rescue medication! So, whether that means it never happened or whether they do just not recall the conversation… but it's a large number of people to have forgotten a conversation. It seems likely that they're not being offered rescue medication. It might be that they don't need it, but it's a big percentage to not need it when you've got four times the normal population with epilepsy.
Medication timing and optimisation
06:03 Torie Robinson
Tell us about the… how appropriate some of the medication they take is. Are they on the right dosage? Do they take it at the right time of day? What happens there?
06:11 Karen McLeod
In my experience, in personal experience, I've found that prisoners get their medicines when the medicine round is done. So, if it's 12 hours apart, they may get it at 8am and 4pm and that's that, and there's no way around it. However, the NICE guidelines for prisoners did say that they should be able to get their medication as prescribed, although that's not what I've seen in practice. I have spoken to somebody with lived experience, an ex-prisoner who said that his experience was that medications were given on time, although the study that I referred to earlier by Thomas and et el found that around 30% of prisoners don't get the medication at the right time. The prisoners are completely reliant on the prison for their medication. So, if they're on something unusual, then if the prison pharmacy can't get it in, then they just don't get it! The prisoners don't have any option to shop around like you would do if you're out in the community. So, they're totally, totally reliant. And if they don't get the medicines, then they just don't get the medicines. So, they found that side effects in prisoners are not particularly troublesome, which might suggest that they're not fully optimised on the medication. The Thomas et al group looked at the prison cohort that they reviewed, and they found that around 67% of the prisoners could have done with a medication review. So, it sounds like they're under threat for epilepsy, and nobody's got an oversight of these people. They move around a lot, prisons don’t tell people that they’ve moved. Really, what they should be doing is when the prisoner arrives at their front door and they do that first assessment, they should be getting in touch with the local health authority and saying “We have a patient with epilepsy, they'll need some follow-up.”. Never happens, I've never seen a letter like that ever. I talked to a prisoner with lived experience and he found that people who had long-term health conditions were well looked after. But in my experience, that's not the case. The prisoners.. we don't know who they are! In my current role, I don't see many prisoners at all. And if there's four times the amount of people in prison with epilepsy, where are they all? We're not being made aware that they exist…
08:22 Torie Robinson
Yep.
08:22 Karen McLeod
… so we can't treat them. It may be that they were under our care in the past, and maybe with chaotic lifestyles they've DNA’d [(Did Not Attend)] a couple of appointments and been discharged. But still, when they're in prison they are entitled to as much health care as somebody who's not in prison, so we should be better at epilepsy care in prisons.
08:42 Risks for PWE in prisons
Torie Robinson
Are there other risks that people affected by epilepsy in prison might be at higher risk of than people outside of prison?
08:50 Karen McLeod
I would say so. I would say that SUDEP’s are at higher risk in prisons for the reasons that we've already alluded to. There's a lack of rescue treatment, the medications aren't optimised, plus seizures will go unnoticed. Prisoners who are isolated will be having seizures that are not recognised. Even prisoners who are in a cell with another person may not recognise what epilepsy is or that they're having seizures. So, it is really, really hard and I think that it does increase the risk of SUDEP. We know that young men are at higher risk of SUDEP, we know that people with drug and alcohol, intellectual disabilities are all at high risk of SUDEP, mental health problems, so all these patients are really high risk.
Personal experience of risk
09:35 Torie Robinson
I mean, I can say I was put in prison overnight one night because they found me on the floor (due to a seizure) - because I've been drinking as well, but I'd had a big seizure - a tonic-clonic - they found me unconscious, thought I was just drunk, and put me in a cell overnight. And that's so dangerous. So, I can totally see what you're saying.
Improving epilepsy care in prisons
09:55 Torie Robinson
So what do you think, then, that we need to do to improve things? We've discussed this awful awfulness, but what can be done do you think to reduce the impact on people's quality of life in prison when they have an epilepsy?
10:07 Karen McLeod
I think the onus has got to be on the prison staff. We're not psychic, we can't imagine that a patient's in prison - if we're not told, we don't know they're there. They do move around quite a lot, they'll be out of the local area, and it's quite hard to catch up with medical notes from somewhere else, but…
10:22 Torie Robinson
Mm-hm.
10:22 Karen McLeod
…they are… the NICE guidelines do say that they are supposed to let people know in the local area that a prisoner has come into their area and has a need. And then once we're aware of that, we can pick that up, but in practice, we see very few prisoners.
10:38 Torie Robinson
How can we reach out to these people in the prisons then? How can we implement this?
10:42 Karen McLeod
That's a very good question. I think…I mean, they should be following the guidelines. It's probably going to have to come from the health officer, I would think, the medical officer. They'd probably have to be the ones to instigate it. It seems they would be the ones who are assessing the prisoners' health needs…
10:59 Torie Robinson
Mm-hmm.
10:59 Karen McLeod
…on admission to prison, so they should be the ones who are following the guidelines. So, maybe just reaching out to the prisons locally, in our locality, and asking them to make sure that they're informing us of prisoners who have epilepsy.
11:13 Torie Robinson
Thank you so much, Karen, for sharing your experience and insights on such an important but often overlooked topic, and thank you for watching Epilepsy Sparks Insights!
If you found this conversation helpful, please give it a like and subscribe, and hit the bell so you’re notified when new episodes do drop. I’d also love to hear your thoughts or experiences in the comments below - I do read them! See you next time.
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