Today CQC has published Learning, candour and accountability, a report about the way NHS trusts review and investigate the deaths of patients in England. The answer is — not very well. And in particular, families and carers often have a poor experience of investigations and are not treated with kindness, respect, sensitivity and honesty. It is quite clear that the NHS needs to do better, but what about the rest of us?
Before I answer that question, let me declare my personal interest.
When my brother died from suicide in 2006 he was under the care of an NHS trust and certainly my family’s experience of the complaints and investigation system was that it lacked humanity and rigour. I remember having to argue that his death met the trust’s own criteria for a Serious Incident investigation — I was right and they conceded, but it was a basic mistake that should not have happened. When the investigation was eventually completed, I requested and was refused a copy because I was not the designated next of kin, even though it was well known that I was leading on communications to save my parents from further distress. And last but not least a long-delayed complaint response arrived with a second class postage stamp on it. I know it was not intentional, but it made me feel that a 35 year-old man with mental health problems was seen as a second-class citizen.
10 years on, reading today’s report, I am saddened that our experience of the NHS then is still the experience of so many people now, including:
- Concerns about how people are initially notified and contacted
- Limited information about and involvement in the investigation process with families sometimes having to fight for investigations and not being kept up-to-date, especially for people with learning disabilities or mental health problems
- Lack of confidence in the trust’s investigations and whether anything would change
There is so much more in the report itself — an important, thorough and significant piece of work — which is a testament to the leadership of my colleague Chief Inspector of Hospitals Mike Richards; the steadfast commitment of the team working with him, especially Victoria Bleazard and Kim Forrester; the tremendous dedication and diligence of special adviser Dr George Julian; and the moving testimony of so many people affected. Thank you to everyone involved.
While this review has concentrated on deaths in the NHS, the findings have relevance for CQC and adult social care.
Lessons for CQC
Let’s start with CQC — there are likely to be two main reasons why our work would impact on families who are bereaved or whose loved one has experienced serious harm.
First, what happened may have prompted inspection and subsequent regulatory action. Families telling us about their experience are a vital part of our review of the service and it is critical that we honour their contribution by keeping the family informed of what we have done, why and when. I know of many occasions when we have done just that and given families reassurance that they have been heard and appropriate action taken. But we don’t always get it right and that can leave families frustrated and angry. We also need to be sensitive when we write our report and consider reading it through the families’ eyes. This can sometimes be difficult when there are confidential details to protect but it is essential that we think through the best way to handle this.
The second reason is related to the new regulations from April 2015, which mean CQC is now the lead inspection and enforcement body for safety and quality of treatment and care matters involving people using services registered with us, and we can prosecute. Our enforcement policy sets out our prosecution criteria, including evidential tests and the gravity of the incident. Some of these judgments are technical but the decisions made will of course be critically important for families looking for understanding and accountability — we need to make sure we follow our own recommendations to the NHS by speaking to families from the outset, keeping them regularly up-to-date and sharing the final decision in a sensitive way.
In August this year we provided guidance to our teams on working with victims following a specific incident clarifying this approach. However, I am aware that we are not following this guidance consistently; for example, leaving one family in the dark about what we were doing and then telling them our decision out of the blue in a cold letter with a second class stamp on it. That should not have happened and we have apologised, we are following up directly with the family, and we are reviewing the guidance to ensure we improve.
Lessons for adult social care
So this report has lessons for CQC and we are determined that we will act upon them. But what of adult social care? While our sector was not the subject of this review, there is enough evidence from coroners’ inquests, our own inspections and issues raised by families themselves to accept that the failings identified in the NHS surely apply to adult social care too.
Many people supported by the adult social care sector will die a dignified and peaceful death, which their families will value and even cherish. The age and frailty of the majority of residents of residential and nursing homes mean that many are providing an end of life care service, so suggesting that all deaths are a cause for concern and subject to investigation is not appropriate — we already know how intrusive and distressing families find the involvement of the coroner if their loved one has a Deprivation of Liberty Safeguard in place.
However, adult social care provides support for younger people with learning disabilities, physical disabilities and mental health problems who may die prematurely or in circumstances that require further examination. And in residential and nursing care for older people again some deaths should certainly be reviewed for just the same reasons as this report sets out for the NHS:
- Learning to improve and change the way care is provided.
- Candour to support sharing information with others including families.
- Accountability if failures are found
But how do we make sure that happens? In a sector as fragmented and diverse as adult social care, I would suggest ensuring that a nationally agreed approach is adopted and delivered is just as important but even more challenging than in the NHS. The response must start with the provider — as it does in the NHS — being open and honest with families, prepared to acknowledge failures, learn and not be defensive. I hope that all providers will read our report, reflect upon their own practice and consider the improvements they could make.
We have a role at CQC too, ensuring, for example, that providers understand and apply the Duty of Candour to underpin their approach with families when things go wrong.
There is undoubtedly more we can do across adult social care to improve the experience of families whose loved ones die an untimely death and to make sure these situations are not brushed aside as natural causes but recognised as being essential to examine, learn from and where necessary ensure accountability. I hope our continued work with partners to create a quality strategy for adult social care with key principles and practical action will establish a framework and a commitment to allow that to happen.