Twelve years ago I received a phone call. I was working for a national body responsible for investigating concerns about serious care failures. The caller suspected that people with learning disabilities in an NHS facility were suffering abuse. It triggered an investigation, which found that some people had endured years of abusive practices. Institutional abuse was widespread, denying people their rights to independence, choice and inclusion.
Fast forward to last week (13 December) and we received another reminder of the inequity of care for people with learning disabilities. The Care Quality Commission (CQC) report into the way NHS trusts in England review and investigate patient deaths found an 'acceptance and sense of inevitability when people with a learning disability or mental illness die early'. This has meant that these patients were far less likely to have their death investigated.
The review was triggered by the tragic death of 18-year-old Connor Sparrowhawk. Connor died in 2013 while receiving care at a facility run by Southern Health NHS Trust. Connor had a learning disability and epilepsy. The trust had initially found that Connor died of natural causes. It took persistent campaigning from Connor’s family to get an independent investigation, which concluded that his death was entirely preventable. A subsequent review found that Connor’s case was not unique at the trust. And now this new report from the CQC has found that Southern’s case is far from unique either.
People with learning disabilities or mental illness are often receiving care from multiple providers. The report found a lack of clarity when identifying the responsible organisation for leading investigations in such circumstances. In many cases, trusts that had provided care to a patient within the last six months simply did not know that the patient had died under another’s care. This information is not routinely shared.
The issues raised in the CQC’s report go wider still. It concludes that families and carers of all patients often have poor experiences of investigations, that countless opportunities to learn and improve are missed, and that there is wide-scale inconsistency in how unexpected deaths are identified and investigated. It recommends local action to improve the quality of investigations, while at a national level, it recommends the creation of a single framework for identifying, reporting, investigating and learning from deaths.
The factors that can contribute to patient safety problems, and even unexpected deaths, often transcend organisational boundaries. They require a thorough diagnosis, coordinated action and a collective vision. This was a major finding in the evaluation of the Health Foundation’s Safer Clinical Systems programme. It is no wonder then that organisations carrying out investigations in a silo, or failing to look across pathways of care, is 'a missed opportunity for identifying improvements' according to the CQC.
This month we published a report, The challenge and potential of whole system flow, which makes the case for organisations to improve the flow of patients, information and resources across health economies to achieve genuinely coordinated care. The proper investigation of unexpected patient deaths is one area where this approach will be vital. It also epitomises what Vincent and Amalberti describe as seeing patient safety from the patient’s perspective and the management of risk over time.
In response to the CQC report, the Secretary of State made a series of announcements in a statement to Parliament. The most headline-grabbing of these is the requirement that, from 31 March 2017, trusts in England will be required to calculate estimates of the number of deaths that could have been avoided. This will be published on a hospital-by-hospital level for the first time anywhere in the world.
The Secretary of State did make some important caveats: that we might expect the numbers to rise as the system becomes better at spotting and reporting avoidable deaths; that no target for the reduction of avoidable deaths will be set; and that the data won’t be suitable to allow comparison between hospitals.
But although this idea seems to have moved on from an earlier proposal that Government adviser Professor Nick Black previously described as 'meaningless', the fact remains that the policy risks becoming an unwelcome distraction. If those responsible for reviewing a death become preoccupied with agreeing the degree of avoidability, will other valuable learning be lost? There is also the uncomfortable question of how to fund these reviews at a time when providers are already operating at capacity.
While transparency of data is generally positive, hospital-level rates of avoidable deaths won’t give an accurate reflection of the care people receive across the whole system, including prior to admission, and focussing on them is unlikely to foster the joined-up approach that the report suggests is needed. There are deeper issues, too, about whether they provide an accurate picture of safety; low rates could risk providing false reassurance.
More practical action to help address the issues identified both at Southern Health and in the wider CQC review would be to support the building of capacity and capability among the NHS workforce to both conduct their own high quality investigations, and to act on the findings of these investigations. It is hoped that the new Healthcare Safety Investigation Branch (HSIB) will support this.
Almost four years on from the publication of the second Francis Inquiry, we have now seen approaching 200 new policy initiatives introduced to improve quality in the NHS, the majority of which have focused on patient safety. But instead of helping to create the learning culture that is so desperately craved, we’re in danger of thinking of countless new ways of what Sir Robert Francis diagnosed as 'doing the system’s business – not that of the patients'.
John Illingworth is an Improvement Fellow at the Health Foundation.
This blog orginally appeared in the HSJ on 21 December 2016.