Inquests into deaths of people with a learning disability or autism are “woefully inadequate”

Investigations into deaths of people with mental ill health, a learning disability or autism are “woefully inadequate”, and inquests often isolate and demonise families, according to a new report by INQUEST.

INQUEST is the only charity to work directly with families of those who died in state detention. In recent years, the charity has dealt with a significant increase in the number of cases involving mental ill health, learning disability and autism.

The report is based on interviews with 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.

Poor communication and a lack of support

The report shows that many of the issues highlighted in similar research seven years ago still persist. For example, families said communication was often poor, with most saying they received very little advice, support and information from hospitals, police and NHS trusts prior to the death of their loved one.

Families reported some of the following failures, especially around the notification of a death and in how and when they were informed: a lack of empathy; an abrogation of responsibility; and little or confused information as to the processes surrounding viewing the body, post-mortems and the initiation of the coronial process.

Many of the participants did not feel listened to regarding their relative’s care needs, and when they raised issues or complained, they were ignored.

When families were notified of the death of their loved one, they said police often lacked empathy and were unable to provide some of the key information, such as how they died. One family said they were made to wait four-to-five hours before they got to speak to the hospital to find out how their daughter died.

Promptly and sensitively delivering notifications of death

To ensure that families have better experiences in the future, the participants make various recommendations as to what initial notification, communication and support should involve.

This includes promptly delivering notification of a death. This should be delivered by a specific point of contact, like a family liaison worker, who is independent of the hospital and is able to offer concise and independent information outlining families’ legal rights.

Families would also like police to receive better training, so they are encouraged to be more sympathetic and sensitive to families. Families also want straightforward information regarding post-mortems, the role and contact details of the coroner and what investigations were underway and by whom. It is important this information is provided in a concise manner to ensure it does not overwhelm the family.

They also wanted to be signposted to support agencies and bereavement organisations, and encouraged to seek specialist legal advice, rather than the current situation whereby it is presented as an option or unnecessary.

Inquests should be fully independent

The families interviewed also criticised the investigation system, saying that fundamental principles that should underpin the investigation process – namely, quality, independence and impartiality – were too often absent. Other criticisms included:

• Families were often disappointed and angered by the subsequent reports. Concerns ranged from the time it took for these to be produced, a lack of opportunity to see drafts prior to publication, inaccurate or impartial findings, to dismay at the lack of impact or momentum for real change.
• Investigations by private companies caused some concern as families were unconvinced by the motives, independence or expertise of those involved. Some were sceptical about the financial arrangements involved.
• Generally, families felt that the investigations fulfilled a role that was more about compliance than enacting radical changes. There were concerns expressed as to how seriously the findings in investigation reports are treated by the trusts.

To improve experiences of investigation systems, the families recommend that investigations are fully independent and conducted by a body independent of the trusts, private care providers and other state agencies.

Families also want to be made aware of their role within the investigation process, and they want their evidence and expertise to be seen as helpful and not troublesome.

The investigator should also carry out the investigation in a timely fashion with a clear agenda and they should provide families with a draft copy of the investigation prior to its publication. It is important that the language is accessible and the recommendations are taken seriously, with commitments to and evidence of compliance.

The same problems continuously reappear

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.”

Lauren Nicolle

Lauren is a qualified journalist who writes primarily across the health and social care sectors. She is passionate about exposing the injustices faced by people with a learning disability, with a particular focus on equal access to healthcare.

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