CQC report highlights failure to learn from tragic mistakes

13 December 2016

Today’s call by the Care Quality Commission (CQC) for radical change in the way deaths of people with mental health problems and people with learning disabilities is investigated is a vital rallying call for change.

We know that both groups are more likely to die prematurely and that these deaths are often preventable, so it is crucial that we learn from these deaths creating real change and improved practice and care for others.

This review was triggered by the sad death of Connor Sparrowhawk, who had a learning disability and epilepsy. Connor died in 2013 while receiving care at an assessment and treatment centre run by Southern Health NHS Trust. It was the campaigning of his family that eventually led to an investigation of his death.

The investigation found horrific failings by Southern Health, including a lack of leadership, poor quality investigations, a lack of family involvement in investigations, and opportunities for learning being missed. The most telling factor being that deaths of people with learning disabilities were routinely not investigated.

The CQC’s report found the way NHS Trusts review and investigate deaths of patients in England to be lacking across the board, having implications far beyond Southern Health. Not one single NHS Trust was able to demonstrate good practice across all aspects of identifying, reviewing and investigating deaths. Or a process that offers support and appropriate communication with families.

Learning from deaths has been highlighted many times over the years by reports such as Death by Indifference (PDF) by MENCAP, which exposed appalling examples of deaths of people with learning disabilities from preventable illnesses. This was reinforced by the Confidential Inquiry into premature deaths of people with learning disabilities (PDF) and the Department of Health report Progress on premature deaths of people with learning disabilities.

These reports called for radical change in the care and support of people with learning disabilities who were found to die 20 to 25 years earlier than the general population from preventable illnesses, yet little seems to have changed.

Given the scale of the problem and the systematic failings, the Foundation for People with Learning Disabilities is calling for ALL deaths of people with learning disabilities to be investigated as standard, whether the deaths occur in NHS or social care provision. We need assurance that we will see an end in the failures in recognising, referring and supporting people with learning disabilities which leads to their premature death. Often these deaths are caused by disjointed systems of communication and lack of universal frameworks that fail to support learning about the prevention of ill health and preventable deaths.

We need a commitment from the health and social care sectors to work together to develop a common framework for investigating deaths. In 2016 we can no longer accept failings in care that have catastrophic consequences because of things like lack of communication or disjointed IT systems.

Ensuring justice for people with learning disabilities involves us all, so efforts shouldn’t focus solely on health provision but on all, including social care, education and anyone responsible for the care of people with learning disabilities. We need to see an end to the discrimination against people with learning disabilities that are automatically excluded from death reviews. The CQC must ensure that inspections are happening exposing the quality of investigations of the deaths of people with learning disabilities.

Equality doesn’t mean justice. To treat everyone the same in health and social care means that the most vulnerable of us will fall through the net and our specific needs go unmet. We all have the right to live a happy and healthy life, and it’s time for that value to be reflected in the systems we use to monitor our contact with health and social care.