©️ By Sophie Lewis | The Grooming Files | November 2025
A damning new report from the Prisons and Probation Ombudsman reveals that prisoners with epilepsy are dying at alarming rates, with systemic failures in diagnosis, care planning and emergency response contributing to preventable deaths. The findings expose a prison healthcare system that routinely fails to meet basic clinical standards for one of the most manageable neurological conditions.
The PPO’s Learning Lessons Bulletin, published 24th November analysed 125 deaths over the past decade where prisoners either died from epilepsy or had an epilepsy diagnosis at the time of their death. The statistics are stark: sudden unexpected death in epilepsy (SUDEP) accounts for 0.64% of prison deaths, compared to just 0.15% in the general population. This four-fold disparity cannot be explained by demographics alone.
A System in Crisis
The research paints a picture of institutional neglect that begins at reception and continues through every stage of a prisoner’s journey through the system. Of the 37 cases where epilepsy was directly implicated in death, 11% of prisoners had never received a formal diagnosis — despite taking anti-seizure medication and being widely recognised as having the condition.
“We found examples where prisoners were receiving medication for seizures and it was widely considered they had epilepsy, yet they never received a formal diagnosis,” the report states. “In some cases, healthcare teams could have done more to determine whether the prisoner had epilepsy.”
The implications are profound. Without a formal diagnosis, prisoners cannot access appropriate specialist care, their seizure triggers cannot be properly identified, and their risk factors for SUDEP remain unassessed. It is healthcare by assumption, not assessment.
The Care Plan Crisis
National Institute for Health and Care Excellence (NICE) guidelines are unambiguous: every person with epilepsy should have a documented care plan. In the community, this is standard practice. In prison, the PPO found that only 38% of prisoners with an epilepsy diagnosis had a documented care plan.
A care plan is not administrative box-ticking. It contains life-saving information: what triggers a prisoner’s seizures, what medication they take, what emergency protocols should be followed, and when rescue medication should be administered. Without this document, prison officers responding to a seizure are operating blind.
The report documents case after case where this absence proved fatal. In one instance, an officer responding to reports of a prisoner having a seizure decided the man was simply sleeping. The prisoner died. The prison’s own policy stated that epileptic seizures required an emergency code blue response. Had a care plan been available and communicated to wing staff, the outcome might have been different.
Seizure Control: A Devastating Comparison
Perhaps the most alarming finding concerns seizure control rates. The World Health Organisation estimates that up to 70% of people with epilepsy could live seizure-free with proper treatment. A 2004 UK study found that 51.7% of people with epilepsy in the community had not experienced a seizure in the preceding year.
In prison, the picture is starkly different. The PPO found that only 18% of the deceased prisoners in their sample had been seizure-free in the past year. More recent research cited in the bulletin found seizure-free rates as low as 0.2% among prisoners with epilepsy.
“The poor seizure control rate among the sample may suggest that these prisoners could have benefited from specialist input and a review of their treatment.”
This is not a marginal difference. It represents a complete failure to provide care equivalent to that available in the community — a legal requirement for prison healthcare. When clinical reviewers assessed equivalence of care, only 58% of cases were found to meet this standard.
The Transfer Death Trap
Prison transfers emerge as a particular danger point. Of the 125 deaths analysed, 32% of prisoners had transferred prisons in the 12 months before their death. More critically, 22% of those who died directly from epilepsy did so within days or weeks of arriving at a new prison.
The report details multiple failures during transfers: prisoners arriving without their medication, care plans not being communicated, specialist appointments missed because receiving prisons were never informed. In one case, a prisoner transferred without several critical medications and missed a consultant epilepsy review that had been booked at his previous prison. He died 12 days after arriving at his new facility.
Prison Service Order 3050 explicitly requires that information on continuing care be conveyed to receiving prisons on transfer. The evidence suggests this requirement is routinely ignored.
Mental Health: The Hidden Complication
The intersection of epilepsy and mental health emerges as a critical concern. Fully 74% of the prisoners in the PPO’s sample had a diagnosed mental health condition, with depression (54%) and anxiety (30%) being most common. This is not merely a comorbidity — it directly impacts epilepsy outcomes.
Research demonstrates that stress can trigger seizures and increase fatality risk. In 75% of the cases reviewed, prisoners had experienced stress related to imprisonment — worrying about cell transfers, separation from family or upcoming sentencing. For people with epilepsy, the prison environment itself becomes a medical risk factor.
The suicide statistics are particularly troubling. Among prisoners with epilepsy who died of causes other than their condition, 34% died by suicide — compared to 26% of all prison deaths over the same period. External research has found people with epilepsy are twice as likely to die by suicide as those without. Yet the report questions whether epilepsy diagnosis is even considered a risk factor in prison suicide prevention.
One case study illustrates how these factors converge lethally. A woman prescribed clonazepam for seizures had her medication reduced by a prison GP concerned about benzodiazepine dependency. The decision caused her “considerable distress” — she worried about experiencing seizures. She was placed on suicide prevention monitoring, but no healthcare staff participated in the process. The GP who reviewed her medication on the day of her death was unaware she was on suicide watch. She died by hanging.
Substance Use: A Compounding Risk
65% of prisoners in the sample had a history of substance use — a known risk factor for both seizures and SUDEP. The report found “some indication of seizures not being taken as seriously where the individual used substances”, with staff in some cases failing to follow local protocols.
This is a dangerous conflation. A seizure is a medical emergency regardless of the patient’s history with drugs or alcohol. Yet the evidence suggests prison staff may be dismissing genuine seizure activity as drug-related behaviour, with fatal consequences.
One prisoner’s illicit drug use increased alongside his seizure frequency after a transfer. While he was warned about medication non-compliance and referred to substance misuse services, “it was not clear that he was warned that non-compliance with medication, alongside substance use, potentially increased his risk of SUDEP.” He died from sudden unexpected death in epilepsy.
Medication Non-Adherence: Protocols Without Practice
Only 34% of prisoners in the sample were taking their medication as prescribed. 28% were not, and for 37% the situation was unclear. Non-adherence to anti-seizure medication is a recognised risk factor for SUDEP — yet the report found medication refusal protocols were inconsistently applied.
One case is particularly damning. A prisoner repeatedly refused his epilepsy medication and experienced regular seizures. The healthcare provider’s protocol required a GP review after five consecutive refusals, with earlier intervention for critical medications. “While healthcare staff sometimes followed this, GP appointments were not always made where this threshold was met.” The clinical reviewer considered the man’s medication “critical to managing his epilepsy.” He died from SUDEP.
In the same case, supervised medication was arranged following concerns — yet the nurse admitted that on the morning of the prisoner’s death, “he did not check [the prisoner] had taken his medication before he left the cell.” Protocols exist on paper. Their implementation is another matter.
Cell Arrangements: The Single-Cell Paradox
NICE guidelines identify sleeping alone without supervision as a risk factor for SUDEP. Yet the PPO found that 69% of prisoners with epilepsy were housed in single cells. Some prisons have policies explicitly preventing prisoners with epilepsy from cell-sharing — ostensibly to avoid placing responsibility on other prisoners.
The irony is grim. The very arrangement intended to protect prisoners may be contributing to their deaths. A cellmate can raise the alarm when a seizure occurs. A prisoner alone in a cell during a nocturnal seizure has no such safety net.
The report also documents prisoners with epilepsy being placed on top bunks despite healthcare requests for lower bunk allocation — an arrangement that increases injury risk during seizures.
The Human Cost
Behind every statistic is a person who died in state custody, often from a condition that is largely manageable with proper care. The case studies throughout the PPO’s report are not complex medical mysteries. They are stories of missed appointments, unfollowed protocols, failures of communication and institutional indifference.
A man who reported feeling “something coming on” after a stressful prison transfer was told he didn’t need urgent help. He was found unresponsive hours later. A woman whose medication change caused her severe anxiety had no healthcare involvement in her suicide prevention monitoring. A prisoner whose seizure frequency increased received no plan to monitor his condition. All died preventable deaths.
The PPO states it will work with NHS England and HMPPS to develop actions improving epilepsy care in prisons. The report’s recommendations are sensible but hardly revolutionary: ensure care plans exist, follow medication protocols, transfer prisoners with their medication, communicate with receiving healthcare teams, don’t put people with seizures on top bunks.
That such basic recommendations need to be made in 2025 tells us everything about the state of prison healthcare. The question now is whether the institutions responsible will treat this report as a call to action — or another document to be filed and forgotten while prisoners continue to die.
Diversity and Demographics
All prisoners in the groups where epilepsy was a primary or secondary cause of death were male. In the broader sample, 7.9% were female. The age distribution showed 32% of deaths occurred in prisoners aged 41–50, with 21% aged 31–40 and 10% aged 21–30.
A notable racial disparity emerged in the deaths directly caused by epilepsy: 24% of these deaths involved Black or Black British prisoners, despite this group comprising around 12% of the prison population. However, when all three categories were combined, Black or Black British prisoners represented 7% of deaths. The PPO does not speculate on reasons for this disparity, but it warrants further investigation.
What Happens Next
The PPO has committed to ongoing work with NHS England and HMPPS. Key areas identified for further exploration include: the appropriateness of prison transfers for some prisoners with epilepsy, the use of medical holds, seizure monitoring and recording systems, information sharing between healthcare and operational staff, and policies around cell-sharing.
For the 125 people whose deaths informed this report, these improvements come too late. For the thousands of prisoners currently living with epilepsy in British prisons, the question is whether this bulletin will finally force systemic change — or whether it will join the long list of ignored warnings about the fatal consequences of institutional neglect.
The full PPO Learning Lessons Bulletin on Epilepsy is available at www.ppo.gov.uk