Last week the Right Reverend James Jones KBE published his report ‘The patronising disposition of unaccountable power: A report to ensure the pain and suffering of the Hillsborough families is not repeated.’  It was commissioned by the Prime Minister, Theresa May, when she was Home Secretary so that the perspectives of the Hillsborough families would not be lost.  James Jones says in his foreword:

‘In this report I do not pretend to speak for the families. But I have listened to what they have said to me. I urge you to help ensure that those responsible for our national institutions listen to what the experiences of the Hillsborough families say about how they should conduct themselves when faced by families bereaved by public tragedy.’

He then appropriately invites people to begin by reading what the Hillsborough families have said about their own experiences. Their words are harrowing, upsetting and shameful.  In a deeply wise, humane and constructive report James Jones does not pull any punches in his criticisms of organisations and those who lead them when faced with tragedy:

‘What this report describes as a ‘patronising disposition’ is a cultural condition, a mindset which defnes how organisations and people within them behave and which can act as an unwritten, even unspoken, connection between individuals in organisations. One of its core features is an instinctive prioritisation of the reputation of an organisation over the citizen’s right to expect people to be held to account for their actions. This represents a barrier to real accountability.’

His report proposes a ‘Charter for Families Bereaved by Public Tragedy,’ supports the idea of an independent public advocate to act for families in such situations, calls for the establishment of a ‘duty of candour’ on the authorities and highlights the need for the proper participation of families in inquests.  In all, the report contains 25 learning points covering everything from openness and the right of families to information, to the danger of false narratives being given by organisations to the media and access to counselling and support.  

All with the instruction that Secretaries of State make sure that public bodies under their remit consider their future conduct in light of the report.  The overall message being that the needs and priorities of the bereaved must come first but that we should not assume everyone’s needs are the same.

I am sure all of us would hope that, were the medical research sector to face such a tragedy, humanity would prevail in the way it conducted itself and, in particular, in the way in which it treated the people bereaved or affected. However, our living history of what happens when things go wrong in the health service is pock-marked with instances where practice has fallen short – from Alder Hay to North Staffs.  

I am also sure we have all made our own private observations about how organisations and their people have behaved in times of tragedy or difficulty – from the downright corrupt to that which is defensive and simply demonstrates a lack of empathy for the experience of others. I remember at the time of the Grenfell Tower disaster hearing a debate in a conference room in which a doctor was professing that we are ‘all patients.’ I couldn’t help but think it sounded the same as if Theresa May had said to the Grenfell Tower residents that she was a flat-dweller: technically correct but experientially wide of the mark.  No, it is the short of thinking that will not rub in times of trouble.

You could say that the greatest test of what we have achieved in public involvement in health research is not what it does day-to-day but how it influences and shapes the response of the sector should a disaster happen.

Let’s hope that day never happens. But let’s be ready for it it does come. Above all, let’s aspire to be beyond reproach in how we put the needs of victims and families first.

Read the report.