Context and data

To understand the learning from epilepsy-related deaths in prisons, the PPO team considered three categories of death types.

• Group 1: Where the primary cause of the prisoner’s death was epilepsy (as recorded in the post-mortem) (25 cases). 
• Group 2: Where the secondary cause of the prisoner’s death was epilepsy (as recorded in the post-mortem) (12 cases). 
• Group 3: Where the prisoner was diagnosed with epilepsy, but their primary or secondary cause of death was not epilepsy-related (88 cases). 

In the past 10 years, the PPO has investigated 125 deaths that fell into one of these three categories. For each group, the PPO report and clinical review was analysed. 

Key findings 

The PPO research has identified the following areas that need to be explored further: 

The number of SUDEPs is higher in prison than in the community. 

It is estimated that sudden and unexpected deaths in epilepsy (SUDEPs) make up around 0.15% of deaths a year in the UK. From post-mortem reports of deaths in prisons from the past 10 years, 0.64% of deaths in prison were SUDEPs. 

The diagnosis of epilepsy within prisons could be improved. 

In 11% of the cases from group 1 and 2 (where the primary or secondary cause of death was epilepsy) the prisoner had not been diagnosed with epilepsy. 

There is a lower remission rate in prison than in the community.  

From the 125 death investigations, the PPO found only 18% had not experienced a seizure in the past year, 56% had, and for the remaining 26% of prisoners it was unclear. 

In cases where care plans were mentioned in the PPO report or the clinical review and the prisoner had an epilepsy diagnosis, only 38% of prisoners had a documented care plan.   

In 40% of cases the clinical review commented on the equivalence of epilepsy care the prisoner received, it was found to be equivalent in only 58% of cases. 

74% of prisoners in this sample had a mental health condition, anxiety and depression were the most common. 

In many cases, the PPO saw a relationship between a prisoner’s poor mental health and a disruption to their epilepsy care.  In 75% of the cases reviewed, there was evidence that the prisoner had experienced stress relating to their imprisonment. Existing research suggests that stress can negatively impact an individual’s epilepsy, making seizures and fatalities more likely. 

There are higher rates of self-inflicted deaths amongst prisoners with epilepsy. 

Of a sample of 88 deaths investigated where the prisoner had a diagnosis of epilepsy, 30 were self-inflicted deaths. In comparison, 26% of all deaths in prison were self-inflicted in the last 10 years, suggesting a higher prevalence of suicide for those diagnosed with epilepsy. Previous external research has also found that people with epilepsy are twice as likely to die by suicide as people without epilepsy. 

Drug use is a potential risk factor for SUDEP. 

In 65% of the 125 investigations the prisoner had a history of substance use. NICE guidelines list alcohol and drug misuse as a potential risk factor for SUDEP. Substance use can also cause seizures and there was some indication of seizures not being taken as seriously where the individual used substances and, in some cases, staff did not follow local protocols. 

 There is often not appropriate monitoring of seizures. 

The PPO found some examples where a prisoner’s seizure frequency increased. Despite this, healthcare teams did not monitor the seizures or consider whether to refer the prisoner for specialist treatment. The PPO found 11 examples where a prisoner’s seizure frequency increased, and the clinical review determined that action could have been taken to address this.  

In some cases where protocols for medication adherence were in place, they were not always followed. 

Of the 125 cases reviewed, 34% were taking their medication, 28% were not and for the remaining 37% it was unclear. The NICE guideline lists non-adherence to medication as a risk factor for SUDEP. 

Where cell sharing was mentioned and where the prisoner had an epilepsy diagnosis, the PPO found that in 69% of cases the prisoner was not sharing a cell. 

There is a clear benefit in a prisoner with epilepsy sharing a cell as their cell mate can quickly raise an alarm if a prisoner is having a seizure. NICE guidelines suggest that sleeping alone without supervision is a risk factor for SUDEP.  The PPO also found a few examples where prisoners with epilepsy, or prisoners experiencing seizures, were placed on the top bunk of beds – this increases the potential risk to the prisoner and should be avoided. 

Conclusion

We must hope that prison medical teams and uniformed staff can now act on these these clear risk factors, many of which can be addressed with minimal resources and at no cost.