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Review finds death of Clive Treacey 'potentially avoidable'

Elaine Clarke says her brother was ‘failed in life and failed in death’ as a national review has found that his death was ‘potentially avoidable’.

Clive Treacey was 47 when he died on January 31, 2017. His family has campaigned tirelessly since then for Clive’s life and death to be properly scrutinised and in July 2020 NHS England commissioned an independent review into the serious matters raised by Clive’s family about his experience of care and the circumstances leading up to his death.

The review, which was published this week, found that Clive’s death was ‘potentially avoidable’ and that ‘there were multiple, systemwide failures in delivering his care and treatment that together placed him at a higher risk of sudden death’.

Clive suffered from epilepsy and the review found that:

  • The post-mortem and pathologist’s report that followed Clive’s death failed to consider epilepsy/SUDEP (Sudden Death in Epilepsy) as the cause of death.
  • Clive’s epilepsy care overall fell far short of acceptable practice for someone with complex intractable epilepsy.
  • Clive experienced health inequalities throughout his life that had a negative impact on his quality of life, some of which caused him pain and suffering for prolonged periods of time and placed him at greater risk of premature death.

Other findings included:

  • Those responsible for commissioning and monitoring Clive’s care did not place him in settings that could meet his needs, did not sufficiently monitor the quality of care he received and, on some occasions, this placed him at risk of harm.
  • Clive and his family were not listened to and opportunities were missed to listen to Clive and engage with his family on how best to meet his needs.
  • The emergency response by staff on the night Clive died was limited, confused and chaotic and may further have reduced his chances of survival.
  • The series of investigations and complaints handling that took place after Clive’s death were inadequate and may have resulted in missed opportunities to take action to prevent harm to others.

SUDEP Action CEO Jane Hanna said: “We see too many other families facing what Clive’s family have gone through; sudden deaths happen and epilepsy is often overlooked in the investigations that follow. When tragic deaths happen the causes of death must also be properly investigated. Families must be spared  the pain of years of campaigning through learnings from deaths. If epilepsy deaths were treated equally we could tackle the staggering pre-pandemic rise of 69%  in epilepsy-related deaths. Decades of reports have shown that saving lives must include basic awareness of SUDEP and risk.”

Clive’s sister, Elaine Clarke, added: “We have had to fight so hard to get here.  The system should have supported and empowered Clive in his life,  but it failed him. We want the failings identified in this review to be addressed so that no one else has to go through what Clive went through or what we have gone through as a family.”

The independent report recommends that commissioners of care for people with epilepsy and learning disabilities must ensure that care providers and service providers take a risk management approach to epilepsy mortality, as recommended in the NHS Epilepsy Right Care Toolkit. Specifically, this should include the implementation and use a standard risk template for people living with epilepsy that crosses organisational boundaries such as the SUDEP and Seizure Safety Checklist tool.

Read the report in full here

If you have been bereaved by epilepsy, please contact the SUDEP Action Bereavement Support Team: 01235 772 852 or [email protected]

For further information about epilepsy risks, how to minimise them & free tools available to help: