Learning Disability Today
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Significant concerns have been raised about the quality of investigations into deaths of patients with learning disabilities or mental ill health by the NHS, which could mean opportunities to improve care are being missed, according to a report.
The national review, by care regulator the Care Quality Commission (CQC), also found that too many families are not being included or listened to when an investigation happens.
The CQC review looked at how NHS trusts across the country identify, report, investigate and learn from the deaths of people using their services. The review found that there is no consistent national framework in place to support the NHS to investigate deaths that may be the result of problems in care. This can mean that opportunities to help future patients are lost, and families are not properly involved in investigations – or are left without clear answers.
Health Secretary Jeremy Hunt requested the review following the publication of the Mazars report into the deaths of people with a learning disability or mental health problem who were being cared for by Southern Health NHS Foundation Trust. While the review looked at trusts providing acute, community and mental health services, it placed a particular focus on people with mental health conditions and learning disabilities.
The regulator is now calling on its partners to work together to develop a national framework, so that NHS trusts have clarity on the actions required when someone in their care dies. This will ensure that learning is promoted and used to improve care, and so that families are consistently listened to as equal partners alongside NHS staff.
Professor Sir Mike Richards, the CQC’s chief inspector of hospitals, said: “We found that too often, opportunities are being missed to learn from deaths so that action can be taken to stop the same mistakes happening again.
“Families and carers are not always properly involved in the investigations process or treated with the respect they deserve. We found this was particularly the case for the families and carers of people with a mental health problem or learning disability that we spoke to during the review, which meant that these deaths were not always identified, well investigated or learnt from.
“While elements of good practice exist, there is not a single NHS trust that is getting it completely right currently. An agreed framework needs to be established that sets out exactly what the NHS should do when someone dies and ensures that families and carers are fully involved and treated with respect.
“Investigations into problems in care prior to a patient’s death must improve for the benefit of families and importantly, people receiving care in the future. We have made a number of recommendations for action as a result of this review.
“This is a system-wide problem, which needs to become a national priority. CQC will support the drive for change by sharing best practice, identifying concerns and taking action to protect patients when necessary. The changes we plan to make to our future inspections will place greater emphasis on how NHS trusts learn following the deaths of their patients, as part of our assessments of how ‘well-led’ they are, holding boards to account if improvements are needed.”
The review was based on evidence gathered during visits to 12 NHS trusts, a national survey of all NHS trusts providing acute, mental health and community services and interviews and discussions with more than 100 families and carers, as well as information from charities and NHS professionals.
It found that the extent to which families and carers are involved in investigations of their relatives’ death varies considerably. Of the 27 investigation reports reviewed by CQC across the 12 NHS trusts, only 3 demonstrated that they had considered the families’ perspectives. Inspectors found that families and carers were not always informed or kept up-to-date about investigations – often causing them further distress. Many families and carers reported that they were not treated with kindness, respect or sensitivity during the investigation process, despite many NHS trusts stating that they value family involvement and have policies and procedures in place to support it.
Also, the CQC found wide variation in the way NHS organisations become aware of the deaths of people in their care and inconsistencies in how decisions are made on whether to carry out a review or investigation after a patient has died. While healthcare staff seemed to understand the expectation to report patient safety incidents, there is no agreed process that recognises which deaths may require a specific response. This lack of clarity and consistency means there will be some deaths which have not been investigated which should have been.
The review also found that when caring and responding to patients’ physical health concerns, acute and community NHS trusts do not always record whether that patient also had a mental health illness or learning disability. These groups of patients will often be receiving care from multiple organisations that would need to be aware of their death, in order to be in a position to consider whether the care they had provided may require a review to identify problems.
Professor Dame Sue Bailey, chair of the Academy of Medical Royal Colleges, said: “This landmark review reveals in stark detail what many in healthcare have suspected for a long time. Put simply, we have consistently failed and continue to fail too many of the families of those who die whilst in our care. This is not about blaming individuals, but about the health service learning the lessons from this report.
“Importantly this is not simply an issue for mental health organisations. We must now ensure we rapidly put in place system-wide changes so that NHS trusts always treat families as equal partners in a consistent manner with humanity, honesty and common decency when deaths occur. As the report recommends the Academy of Medical Royal Colleges will work with the National Quality Board and partners to take forward the recommendations and develop a new single framework on learning from deaths.”
Disgraceful culture of denial
Deborah Coles, director of INQUEST and a member of the Expert Advisory Group to the CQC review, said: “This report is long-awaited recognition of the disgraceful, yet prevalent culture of denial and secrecy so brutally experienced by the relatives of those who have died. From the notification of death, through internal investigations, inquests and beyond, relatives have had to fight every step of the way for the truth.
Political will and leadership are now required to drive radical change to a system which is not fit for purpose. We reiterate that only an independent investigative framework can tackle head-on the dangerous systems and practises which are costing people’s lives.
This report must be a catalyst for change, to which families are central; with the necessary parliamentary scrutiny and oversight.”
The Mazars review came about only after sustained campaigning by many bereaved families for open and honest investigations. This included the family of Connor Sparrowhawk, who died while in a facility run by Southern Health in 2013, in what has been ruled a preventable death.
Connor’s mother, Sara Ryan, said the report does not go far enough: “There is no learning, no candour and no accountability. This report underplays the impoverished treatment which learning disabled and mental health patients receive in the NHS, in life and in death.”
Jan Tregelles, chief executive of Mencap, and Vivien Cooper, chief executive of The Challenging Behaviour Foundation, commented: “This report recognises radical change is needed to transform a culture across NHS Trusts where learning from mistakes that led to deaths is not currently a priority. Over 1,200 people with a learning disability die avoidably in the NHS every year. It is deeply concerning that many of the NHS Trusts visited did not understand the specific support needed by people with a learning disability.
“Losing a member of your family and finding out their death was avoidable is devastating and traumatic. Families need to be treated with respect, compassion and need direct and transparent involvement in investigations as to why their loved one died.
“The recommendations in this report need to be urgently taken forward. This requires a change of culture, attitude and processes to end a healthcare system that is currently failing people with a learning disability and their families.”
Mark Lever, chief executive of the National Autistic Society, said the report will be “extremely upsetting” for anyone who has lost a loved one in care and should prompt urgent action.
“It is deeply shocking that not one of the NHS trusts in the review is getting the whole investigation process right,” he said.
“Any unexpected death is a tragedy and we should expect that families going through this horrible loss are treated with kindness, respect and sensitivity during the investigation. However, as confirmed by this report, we know that far too often this is not the case.
“We welcome the recommendation to develop one single framework which can standardise and improve practice across the country. We also welcome the call for consistent support and involvement for bereaved families and carers, which is crucial.
“The Government must respond to these recommendations and act immediately. We will be watching closely for improvements being put in place which will reassure families that mistakes from the past will not be allowed to happen again.”