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PPO research highlights improvements are needed in care of prisoners with epilepsy 

Published:

A Learning Lessons Bulletin published today by the Prisons and Probation Ombudsman identified that the care of prisoners with epilepsy needs to be improved. The bulletin aims to raise awareness to prison healthcare staff about the potentially fatal outcomes where epilepsy is not treated properly.  

Ombudsman Adrian Usher commissioned the PPO’s research team to undertake a review of 125 death investigations from the past 10 years where a prisoner’s death was caused by epilepsy, or where the prisoner was diagnosed with epilepsy. 

Read the bulletin and the press release 

“I am concerned about the number of epilepsy-related deaths in prison”, said Adrian. “This is an area which needs more attention as our research found some concerning findings.  

I am grateful to the healthcare professionals that are helping us develop actions for further work in this area. We will continue to work alongside the NHS and HMPPS to formulate and oversee actions to improve the understanding of epilepsy care and the management of epilepsy for people in prison.”  

Summary of findings: 

SUDEPs, diagnosis and remission rate 

Sudden and unexpected deaths in epilepsy (SUDEPs) make up an estimated 0.15% of deaths a year in the UK, whereas 0.64% of deaths in prison were SUDEPs in the past 10 years.  

The diagnosis of epilepsy within prisons could be improved. The prisoner had not been diagnosed with epilepsy in 11% of the cases where epilepsy was the cause of death.  

There is a lower remission rate in prisons than in the community. In the cases we reviewed, only 18% had not experienced a seizure in the past year.  

There were examples where a prisoner’s seizure frequency increased and healthcare teams did not monitor them or consider whether the prisoner should have been referred for specialist treatment. Some of these prisoners died of SUDEP.  

Healthcare staff should: 

  • Prioritise an early review of patients in prison with a history of seizures and refer them to neurology if the diagnosis is not confirmed or if seizure control is poor. 
  • Ensure that prisoners with epilepsy receive appropriate care to control their seizures and reduce their risk of SUDEP. 

Care plans 

Only 38% of prisoners with an epilepsy diagnosis had a documented care plan making it difficult for staff to appropriately support them. In 40% of cases where the clinical reviewer commented on the epilepsy care the prisoner received, it was found to be equivalent to community care in only 58% of cases.  

Healthcare staff should: 

  • Ensure all prisoners with epilepsy have a care plan and a copy of this.  

Mental health and risk of suicide 

74% of prisoners in our sample had a mental health condition. Anxiety and depression were the most common. In many cases, we saw a relationship between a prisoner’s poor mental health and a disruption to their epilepsy care.  

Within group 3 (prisoners who were diagnosed with epilepsy, but epilepsy was not the cause of their death) 34% died by suicide. 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. 

 Healthcare teams should:  

  • Ensure there is effective communication between healthcare professionals involved in the care of people with epilepsy and a mental health condition that impacts their seizure control.  

Substance use  

Substance use is a potential risk factor for SUDEP. In 65% of the 125 investigations we reviewed, the prisoner had a history of substance use. 

Substance use can also cause seizures, and we found there was not often appropriate responses to seizures by staff, with some staff not following local protocols. 

Healthcare staff should: 

  • Work with other specialists, such as substance misuse teams, to address the risk of prisoners with epilepsy using substances.  

Non-adherence to medication 

Where protocols for medication adherence were in place, in some cases, 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 guidelines also list non-adherence to medication as a risk factor for SUDEP.   

Healthcare staff should: 

  • Ensure robust processes for escalating and managing poor adherence with anti-seizure medication. 

Cell sharing and top bunks  

Prisoners with epilepsy were not sharing a cell in 69% of cases. There are clear benefits in sharing a cell as the cellmate can raise the alarm if a prisoner is having a seizure, however, the cellmate should not be responsible for making medical determinations.  

We also found examples where prisoners with epilepsy, or prisoners experiencing seizures, were placed on the top bunk of beds, increasing the potential risk to the prisoner.  

All staff should ensure that:  

  • prisoners suffering from seizures are not located on top bunks.