Recognising ‘what good looks like’149 Suzanne Shale
by Suzanne Shale
Chair of AvMA
I am in awe of Will Powell, Josephine Ocloo, Clare Bowen, James Titcombe, Scott Morrish and Sara Ryan. Their adored children all died avoidable deaths in NHS care. These parents are truly remarkable for the tenacity with which they have fought to get honest explanations of how and why their children died.
Each case has taken years of campaigning, corresponding, emailing, complaining, complaining again, hunting for evidence, getting independent reports, legal action, more legal action, and commissioning of inquiries before anything like a proper answer was forthcoming.
Will and Anita Powell’s determination to get the truth about Robbie’s death took them to the European Court of Human Rights. Their case eventually resulted in ‘Robbie’s law’, a legally enforceable duty of candour in England, which is also under consideration in Wales and Scotland. These are steps in the right direction, if not perfect. But I doubt we’d have them at all if not for the indefatigable efforts of Robbie’s parents.
The death of Connor Sparrowhawk – or, as his friends and family call him, Laughing Boy (LB for short) – is the most recent case in this sad litany. LB’s friends and family fought for an independent investigation which found LB’s death while in the care of Southern Health was a result of neglect. And they secured an independent report that found that deaths of mentally ill and learning disabled people were infrequently investigated by Southern Health, and that families were involved in fewer than half of all the investigations the Trust carried out.
This independent report into the quality of investigations – the Mazars report – was officially published the day Parliament broke for Christmas. This was unfortunate timing from a political perspective. But the real work that needs to be done now is not speechifying by MPs. Anyone who thinks that we have an obligation to learn when things go wrong should read Mazars. That means everyone. The report is relevant to all NHS providers, whatever kind of care they provide and however they go about reviewing unexpected deaths.
The Guardian has reported data indicating Southern Health is probably not alone in its selective approach to investigations. But even the best-governed Trusts are likely find things they can improve upon if they compare their approach with the standards of governance and mortality review advanced by Mazars.
The Mazars Report is a significant legacy of LB’s death, just as the duty of candour is a lasting legacy of Robbie Powell’s. We have a moral duty not to squander either legacy. All healthcare providers – whether NHS or private – need to make fundamental changes in how they manage the aftermath of healthcare harm.
Mazars point the way towards the development of standards of governance for serious incidents. But they are auditors, and were asked to measure stuff. Dealing compassionately with healthcare harm is about more than good governance. If we are really going to get this right, we need to think long and hard and humanly about what it takes to rebuild trust and make amends.
Managing the aftermath of adverse events is about very much more than investigations and action plans. A broader view of ethical practice is required. Organisations need to understand, but also see beyond, how they currently get it wrong. They also need a credible vision of ‘what good looks like’.
Drawing on research, and testimony from many patients and families who have experienced serious harm, Murray Anderson Wallace and I think there are seven key ethical practices that healthcare organisations need to learn to do well.
- Be attentive to negative perceptions of care, and a provide a supportive response to complaints (patients and families are trying to get your attention)
- Do disclosure supportively and promptly (“compassionate candour”), always asking what more you can do to help patients and supporters who have been let down by your organisation
- Provide effective support for clinicians, clinical teams, and others involved in adverse events, both because this is morally right and because it will keep your patients safer
- Implement a system of transparent, impartial, and authoritative inquiry (going beyond Mazars which is limited in its scope)
- Implement a plan of action that has been developed with or approved by patients and their supporters, and is based on robust improvement principles
- Adopt a restorative approach to restitution, recognising that ‘making good’ is the only genuine way of saying sorry
- Implement fair principles of accountability and a just approach to sanction
We have described in more detail what each of these practices should aim to achieve using the Darzi domains of quality, safety, and patient experience. An early account of these ideas – when we were still calling them standards – can be found in AvMA’s journal Clinical Risk. If there is sufficient demand we will blog about them for AvMA – so contact AvMA or tweet @AvMAuk if you want to read more.
When patients’ families say ‘make sure this cannot happen to someone else’ they are not just being altruistic. They are also invoking the ‘principle of Archbishop Tutu’s pen’. The Archbishop explained that if you steal my pen, apologise, but do not return the pen, then the apology is worthless because nothing has happened.
So, being truly sorry means doing what is necessary to repair the injury you have done. In the case of patient harm, you cannot ‘give the pen back’. The harm was done and it cannot be undone. But you can do something else. You can make your service better. Until you have ‘given the pen back’ no one will believe that you are sorry.