Families and the Politics of Patient Safety


It’s been one of those weeks where I could have blogged about a dozen things. I got into a twitter argument with Ann Pettifor about what I believe is the intrinsically ideological nature of world views. Then there was the statement by the Archbishop of Canterbury that it’s not racist to be worried about immigrants and indeed that saying its racist is outrageous. Well I guess that would be his world view and there are undoubtedly people who worry about the impact of mass movements of people in a way that isn’t racist – Peter Sutherland the UN Special Representative for Migration would be a good example – but most us aren’t concerned about migration because we care, we are concerned about immigration because we fear and the thing we fear most of all, is difference. 

But those are blogs for another day – today I think I’m going to write about patient safety.

Now you might think that patient safety isn’t a particularly interesting or important subject and you’d be in good company if you did. The government launched a major patient safety initiative this week at a Patient Safety Global Summit and it got precious little media coverage. Understandable? Perhaps, patient safety doesn’t seem very exciting but this year more people will die from medical error in the United States than will be killed in the war in Syria. Almost as many people will die in the UK from adverse incidents as will die from gunshot wounds in the United States and in the UK alone the current clinical negligence liability of the NHS is estimated at £26.1 Billion. So it may not seem exciting but in reality its impact upon our everyday lives is likely to be far greater than terrorism or immigration.

Anyway in response to a problem of this scale the government is launching an organisation called the Healthcare Safety Investigations Branch (HSIB). Its remit will be to create a safe space in which patient safety incidents can be investigated and which will disseminate safe practice to NHS Organisations. It will draw on the principle of “Intelligent Transparency” which Jeremy Hunt defined in a speech at Lancaster House as…  …well actually he didn’t define exactly what he meant by Intelligent Transparency beyond stating that the government would publish data on numbers of avoidable deaths by Trust as well as data on the openness and honesty of reporting cultures.

Beyond these new performance measures we have also been informed that the HSIB will be resourced in its first year to investigate 30 incidents and that most of the investigations that the organisation will carry out in its first year will be into deaths in maternity services. So just so we are clear, the government believes that a proportionate response to the 12,000 avoidable deaths that will likely occur in the NHS this year is to resource the investigation of 30.

I guess going back to my argument with Ann Pettifor about the ideology of world views – I could argue that the discrepancy between the government’s language about patient safety and the reality of its commitment as expressed by the resources allocated to HSIB, is an indicator of the profoundly ideological or even rhetorical nature of that commitment. If the government was serious about preventing avoidable deaths it would go way beyond the scope of its current measures and invest in learning and transparency in a way that would genuinely transform the relationship between patients, their families, practitioners and the managerial infrastructure of the NHS.

The problem for the government is that in order to prevent its mistakes – it has to learn from them – in order to learn from them it has to admit them and in admitting them it potentially becomes liable for them. Hence the focus upon Intelligent Transparency. The intelligent bit comes in being transparent enough to be able to create more performance data so that politicians and senior managers can use it to manage the behaviour of NHS staff, without being so transparent that it increases the NHS’s vulnerability to litigation. Unfortunately for families and patients the addition of yet more performance criteria and the establishment of a significantly under-resourced investigation unit, is unlikely to make a difference to the number of people dying from preventable causes.  

So where does that leave us – the patients and the families of people in the care of the NHS.

Should we back it or should we be cynical about the government’s plans for trying to make the NHS a safer place for its patients and its practitioners?  I think that the answer to this can be found in the perspectives of two parents both of whom have personal experience of the tragic consequences of medical error. James Titcombe, whose son Joshua died from an unidentified infection nine days after he was born and Sara Ryan whose son Connor died whilst in the care of Southern NHS Trust. Each of their children died for different reasons, but what they have in common is that both Connor and Joshua died from preventable causes.

I think it is fair to say that both Sara and James have chosen different ways of fighting for their own sense of justice. The focus of James’ struggle has been a relentless drive to uncover the truth of what happened at Morecombe Bay, whilst retaining a commitment to work with practitioners and politicians to improve the system.  For Sara the struggle to uncover the truth of the failings that led to Connor’s death and the implications that this has for the wider community of people with learning difficulties has remained outside the system.

For me each of their struggles is in their own way heroic. James’ reason in the face of unreason and incompetence; perhaps expressed most clearly at the recent court case, where his recollections were described by a practitioner’s council as unreliable, on the very same day that he was introduced by Secretary of State for Health as a champion of the government’s patient safety initiative or in the unreason of the  letter from a local doctor who accused James of failing to let his son’s soul rest in peace. But the brutality of the current system is shown equally clearly in the struggles that Sara Ryan has had to endure in her efforts to inch incrementally closer to the truth of her son’s death and nothing deserves our respect more than the tenacity and humanity she has displayed in the course of that struggle.  

What is less heroic is the way in which elements of the system have come to represent and appropriate the actions of these two parent’s. James has engaged with the system, struggled with it and to a great extent has become an exemplar of “the good parent”, the family member who has seemingly adjusted to his personal tragedy and who is working for the benefit of others to improve the system.  Whilst Sara “the angry or frustrated parent” is implicitly being used as the unspoken example of a parent who has failed to adjust to her son’s death and is looking to “ blame” practitioners for their mistakes.  It’s not been publicly stated, these things never are, but in my opinion it is reflected in the Secretary of States failure to take significant action against Southern Health and in the tone of his speech:

Time and time again when I responded on behalf of the government to tragedies at Mid Staffs, Morecambe Bay, Winterbourne View, Southern Health and other places I heard relatives who had suffered cry out in frustration that no one had been ‘held accountable.’

But to blame failures in care on doctors and nurses trying to do their best is to miss the point that bad mistakes can be made by good people. What is often overlooked is proper study of the environment and systems in which mistakes happen and to understand what went wrong and encouragement to spread any lessons learned. Accountability to future patients as well as to the person sitting in front of you.

The rush to blame may look decisive. It may seem like professionals are being held accountable. In fact, the opposite can happen. By pinning the blame on individuals, we sometimes duck the bigger challenge of identifying the problems that often lurk in complex systems and which are often the true cause of avoidable harm.

The reality is that neither representation accurately reflects James or Sara or any other parent in their situation. James is now undoubtedly working to focus on the role that systems can play in improving patient safety culture and to a great extent he has become a part of the improvements that have taken place over recent years – yet in my opinion his best intentions are in danger of being hijacked by a politician who whilst well meaning has no intention of making that system genuinely more accountable for its mistakes – if that accountability has the potential to lead to financial litigation.

Equally Sara may well be looking to “blame” or hold to account an organisation for the death of her son but that search for justice is not a reflection of her lack of adjustment or of her being misguided, it is a measure of the lack of transparency and obfuscation with which she is confronted and her rejection of the presumption that staff are always doing their best and that systemic failure is the only cause of avoidable death.

To be honest the more I look at the detail of each of their stories, the greater the parallels and the more that I see that they have in common. In fact the major difference is probably that when James started his struggle to uncover the truth social media didn’t exist – whereas it has been an essential part of the #justiceforlb campaign. There may also be differences in responses to James and Sara because of the fact that James is the bereaved parent of an infant and Sara is the bereaved parent of an adult with learning difficulties. The former is something that every parent fears – whereas the death of an adult child with learning difficulties happens to parents who are “different”.  Another thought for another day. 

However to return to the question I asked earlier: Should we back the government’s plans for trying to make the NHS a safer place for its patients and its practitioners?

Despite my cynicism about Jeremy Hunt’s underlying motivations, I believe that the experiences of families across the country indicates that we probably should.  But in doing so, we should probably remember that for a while yet the reality of the struggle for the truth about why people die in NHS care is more likely to reflect the experiences of James Titcombe at Morecombe Bay and Sara Ryan at Southern Health than the ideals espoused by the participants of the Global Patient Safety Summit and that any government that is genuinely serious about tackling the 12000 avoidable deaths per year will have to invest an awful lot more in patient safety than this one is doing. 



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