Joshua Titcombe would have been six years old today. He died on 5 November 2008 of an overwhelming infection; he was eight 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. Joshua’s life could not be saved.
The grief of the Titcombe family turned to anger as they sensed the circumstances surrounding Joshua’s death were being obscured. When Joshua’s father, James - former project manager in the nuclear industry and now a patient safety adviser for the Care Quality Commission - 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,” he said.
Since then James has campaigned tirelessly to gain a clear acknowledgement of what went wrong with Joshua’s care. As he 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 on long-standing patterns of poor-quality care, a resistance to accept responsibility when things went wrong and an apparent inability to learn from error were present at every level of the system.
“In the NHS, learning is often limited and preventable errors repeated”
When avoidable mistakes happen, learning how to prevent future recurrence must be a primary focus of any response. It is certainly what most families with whom I work say they want. But, there is evidence to suggest that, in the NHS, learning is often limited and preventable errors repeated. The reasons for this are complex and range from poor organisational cultures to professional isolation and staffing difficulties, but one area that is consistently overlooked relates to how we support those most directly affected - patients, their families and clinical staff. Rather than being encouraged to deal with the very real human impact, too often patients and staff find their “worst nightmare” is compounded by the way they are treated in the aftermath.
Preventable harm in healthcare is a shock to all concerned. For families, the bond of trust with those caring for them is seriously undermined, while the world of the health professional is upended, 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. Careful, skilled interventions are needed - not just to investigate but also to reconcile and to learn.
“Careful, skilled interventions are needed - not just to investigate but also to reconcile and to learn”
Despite evidence of its positive effects, very few organisations have dedicated experienced clinical staff who can, at short notice, support and coach colleagues to make good, supportive disclosures. Even fewer can 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 rich source of learning. Families often have insights into the gaps in care and the nuances of communication that can play a vital role in identifying errors.
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. Humans will always be vulnerable to error. In healthcare the consequences can be catastrophic. By properly supporting the families and staff involved, our ability to learn from such events will be greatly improved. Surely, for all our sakes, it is time to do the right thing?
Murray Anderson-Wallace is a specialist in healthcare communications and executive producer of www.patientstories.org.uk