Joshua Titcombe would have been six years old this week. In fact, he died on the 5th November 2008 of an overwhelming infection. He was 8 days old.
Although his parents repeatedly raised concerns about his condition, their calls for help went unheard. By the time action was finally taken, it was too late. Despite a huge effort– including several days on ECMO – Joshua’s life could not be saved.
The natural grief of the Titcombe family turned to anger as they sensed that the circumstances surrounding Joshua’s death were being obscured. When Joshua’s father, James – a former Project Manager in the Nuclear Industry and now an advisor of patient safety for the Care Quality Commission (CQC) – received the Trust’s first investigation report, he was amazed.
“In my work in the nuclear industry, I’ve seen more comprehensive reports on rusty bolts on machinery than the process we’d been through regarding the preventable death of our child.”
Since then James has campaigned tirelessly to gain a clear acknowledgement of what went wrong with Joshua’s care. As James shared his family’s terrible experience with me, the parallels with the findings of the Francis Inquiry were stark. A failure to identify and act upon long standing patterns of poor quality of care, a resistance to accept responsibility when things went wrong and an apparent inability to learn from error was present at every level of the system.
When avoidable mistakes or failures happen most would agree that learning how to prevent future recurrence must be the primary focus of any response. It is certainly what most families I work with say that they want. However, there is strong evidence to suggest that in the NHS, learning is often limited and preventable errors are repeated. The reasons for this are complex, ranging from poor organisational cultures through to professional isolation and staffing difficulties. But one area that is consistently overlooked relates to the way in which we currently support those most directly affected namely patients, their families and clinical staff.
Rather than being encouraged to deal with the very real human impact too often patients and staff find that their “worst nightmare” is compounded by the way that they are treated in the aftermath.
Preventable harm in healthcare usually comes as a terrible shock to all those concerned. For families, the “bond of trust” with those caring for them is seriously undermined. For health professionals – who don’t come to work intending to do harm – their world is turned upside down, often leaving them devastated and bewildered.
This is an exceptionally fragile time. The entire basis of the healing relationship has been disrupted and active approaches to restoration are needed. In these circumstances very careful and skilled interventions are required – not just to investigate but also to reconcile and critically, to learn.
But despite good evidence of its constructive effects, very few organisations have dedicated experienced clinical staff that can – at short notice – support and coach colleagues to make good supportive disclosures. Even fewer have mechanisms in place to provide the longer-term psychological support that may be needed.
Not only do families deserve honest answers and active support but high quality supportive disclosures can be a very rich source of learning. Families often have insights and observations into the gaps in care and the nuances of communication that can play a vital role in the identification of error.
“Joshua’s Story” clearly identifies the failures in regulation but it also sharply illustrates the need to improve our response to families and staff in the event of preventable harm.
Human beings will always be vulnerable to error. In healthcare the consequences can be catastrophic. By properly supporting families and staff involved our ability to learn from such events will be significantly improved. Surely, for all our sakes, it is time to do the right thing?
This article was first published in the Nursing Times on the 5th November 2014