26 April 2023

Bereaved families are facing persistent challenges following the death of their loved one in mental health services, as highlighted in a new report by INQUEST.

The report shows that families face numerous hurdles during investigations and inquests into their loved ones’ deaths, and the processes are not delivering the change required.

They are instead shrouded in delay, secrecy and animosity towards families, who simply wanted active participation and a truthful account of what caused their relatives’ deaths.

INQUEST’s Family Consultation Day heard from 14 family members who were bereaved by deaths in the care of mental health services or settings for people with learning disabilities and/or autism, and had faced or were going through inquests and investigations.

Key concerns raised were around lack of candour, transparency and accountability. Families also highlighted the inadequate levels of communication between families and the bodies responsible for care.

Many felt they were immediately placed on the backfoot during investigations into their loved ones’ death.

Bereaved people engage in the post death processes with the hope that they can access truth, but also that their participation can inform change to prevent future deaths in similar circumstances.

However, the research found that a litany of issues left unchanged following these processes is adding to the distress families feel and risks making them disengage from investigatory processes entirely or being retraumatised by the process.

Speaking anonymously to INQUEST, one bereaved family member said: “The death wounded me, dealing with mental health services has broken me. Everything is a fight when you have the least fight in you. Nothing can bring your child back. All we can do is help them ensure it doesn’t happen again.”

In 2016, INQUEST published the report of a Family Listening Day which was commissioned by the Care Quality Commission for their review of how NHS Trusts investigate and learn from the deaths of people who are under their care. Seven years on, many of the same issues were repeated by families in very similar situations today.

If a person dies whilst an inpatient under the care of a mental health Trust, there is currently no automatic independent investigation (in contrast to other detention settings). One family member said, “They came to my house and said trust us, we’re going to change things, but how can I trust you when you killed my son?”

Families are calling for major changes to the investigatory and inquest system, including:

• independent investigations into mental health related deaths,
• a national coronial service to address inconsistences in the inquest system,
• non-means tested legal funding for all families involved in inquests where state bodies are involved to provide proper equality of arms.

Nim and Doug Cave, parents of Stephanie Cave who died in 2016, said: “When our teenage daughter unexpectedly died in the care of a NHS-funded mental health hospital, 125 miles from home, our family was thrust into a process of investigations and an Article 2 inquest, which we expected in good faith, would result in truth and learning. However, we were faced with defensive barriers which prevented learning and denied us access to the answers we had a right to receive. 

We want to ensure that Article 2 inquests and associated investigation processes fulfil their purpose in identifying areas for learning and change that would prevent similar deaths from occurring in the future. We also want no other individual to experience what our daughter did, and no other family to go through what we have had to. This is in the public interest.  

Alongside other bereaved people, we are calling for urgent changes to right these wrongs.” 

Deborah Coles, Director of INQUEST, said: “I was saddened and angered to hear families discuss many of the same issues raised over many years. Too often, investigations into deaths of people with mental ill health, a learning disability or autism are woefully inadequate, and inquests isolate and demonise families.

The consequence of the failures in the investigative system is that families can feel retraumatised, and some disengage entirely. Successive governments have been repeatedly warned that the investigation system is not fit for purpose. INQUEST’s casework shows that this is a systemic problem and not isolated to one rogue Trust or provider.  

The lack of effective scrutiny and accountability frustrates the ability of organisations to learn and enact changes to policy and practice to prevent future deaths.

The voices reflected in this report are too strong and their stories too compelling to be ignored.”

ENDS

NOTES TO EDITORS

For more information and interview requests contact Leila Hagmann on [email protected] or 020 7263 1111.

The full report is available here.