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  • Writer's pictureSusan Valproate Victims

Epistemic what??? a response to the Hughes Report

To use a baking analogy, the Hughes report was a bit of a part built triple layer cake.  Mostly vanilla and satisfying, doing what it needs to do, but held together with a substantial filling of Principles to stop it falling apart and to provide us with some satisfaction.  These are Principles that have evolved from historical but similarly long-standing problems that society has thrown at us but that we’ve not been able to resolve.

The Nolan Principles of public life were developed after the ‘cash for questions’ scandals in the 90s by John Major. They began a step-change to guide public service organisations and government to change their culture and thinking at ground level.  I lived in Haringey during the Climbie and Baby P scandals and as a family support volunteer became fully versed in the ‘Every Child Matters’ principles that were a result of these child protection failures.  Similarly to Nolan they were designed to change culture and I believe they did.  If you worked with children in any way, you’d look at these principles to guide your actions and your policies.  There were others, but Principles were ways to focus on what people how they approached their work rather than what rules they may or may not break.  Maintaining good practice rather than operating within rules.  

The development of principles and their use in policy take a while to develop and are as a result of serious wrongdoing, in this case going on for decades.  The issue wasn’t so much about culture and behaviour of one group of people, it was about the approach taken by those in power to address historical issues involving a range of bodies and organisations with complex interactions that rather than working to support redress or reparative or solutions, would work against each other.  The Nolan Principles are able to address these to a certain extent but couldn’t address the deep systemic conflicts that affected the interaction between organisations and sub-systems whose purposes often clashed.  These clashes are use as excuses and opportunities for buck-passing and no attempt was made to resolve them as it was better to kick them into the long grass and hope people forget about them.  Those who needed most help, suffered most, as did those children in Haringey.

Where protecting a child is complex but manageable with the right approach, resolving a complex long term issue in a way that might damage industry, or damage the government of the day, or be legally tricky, or even emotionally damage the people who’d have to look those victims in the eye and acknowledge the harm, these epic medical failures, such as contaminated blood, mesh, valproate, become almost unmanageable and therefore easier to ignore than address.  

But it’s possible to say now that the Nolan Principles are filtering through.  The Francis Report was published in 2013 as a result of the Mid Staffs Hospital Trust inquiry 8 years previously. It pointed out cultural failings within the healthcare system which resulted in a number of changes in approach and culture in hospitals and hospital trusts.  In 2015 it was reviewed and further actions were taken to improve CQC inspections and to support whistleblowers.  

But it’s all well and good to use worthy Principles to change the culture of the systems that have harmed us - what nobody’s examined yet (or applied yet), is how to change the culture of making things right for the victims.  

The first principle mentioned are that of Restorative Practice - this is a cultural approach to conflict resolution that’s less about having one winner, and more about having a win-win situation with conflicting groups  coming to an understanding and recognition of each other.  It’s used in healthcare now and involves processes of communication, encouragement and positivity.  A family conference is a good example of restorative practice.

Outlined clearly in the Hughes Report are some principles that Robert Francis used to devise a framework for redress for those victims.  Redress should be Remedial, Respect for dignity, Collaborative, Choice, Individualised, Inclusive, Non-technical, Accessible, Ease of proof, Broad Improving, Complementary, Holistic and most would agree that these are worth following.

So the Hughes report also brings in the concept of Miranda Fricker’s epistemic injustice (as opposed to Foucault’s epistemic justice - spot the difference). These are concepts borne out of philosophy but now often used in the sociology departments.  Rather ironically I think for such an uncommon word, it means the sharing of knowledge as a power (ish).  When I gave evidence to the IMMDS Review (completely unscripted but oh well, sh*t happens), I mentioned the term ‘schweigen’ which translated into English from German means to remain silent.  It’s always bothered me that there isn’t such a word in English because English middle class culture is so often based on unspoken words, euphemisms, hints.  Germans are known for directness - but when they’re not direct, at least they own it.  

Valproate (as a general issue) is full of unspoken words.  Hidden, locked down documents, redacted or classified papers. Minimal useful information on leaflets (so as not to confuse the public) with maximum not particularly useful information.  Where the leaflets could have stated “when taken in pregnancy you have a 10x greater chance of having a life-limiting malformation which could result in your baby’s spine growing through its back”, instead of ‘1-2% spina bifida’, things may have been very different.  

Yet the analysis of our issue thus far has been related to ‘who knew what and when’, who is to blame, what laws can apply etc. Evidence-based everything.  That’s until the IMMDS Review First Do No Harm report was published (with a 250 page submission initiated but not written by yours truly).  Baroness Cumberlege listened first hand to what must have been traumatic reports of injury of women whose internal organs were slowly being sliced through by a device designed to stay in place with scar tissue and would be unable to be removed.  I’ve spoken to some and it leaves even me without words.  Words and understanding play the largest part in our Epic Medical Failures.  The reasons that the words and understanding fail to be used, have been examined in the report, but not entirely, there’s room for expansion.

The information and knowledge that powerful institutions and individuals have is what differentiates us from them.  It’s used against us in ways that are unforgivable and transcend our human rights - it’s used to ignore those of a different race, ability, sexuality, gender and class.  Less so now, but knowledge is what’s framed our discussion with, our understanding of, our ability to clarify what’s wrong to those who should be here to help us.  Information about conflicts of interest is hidden behind layers between financial advantage to worthy solutions.  The Hughes report and the Contaminated Blood redress scheme recommendations were drafted by experts derived from a university department partially funded by the European Justice Forum, an industry lobby that includes the makers of the products that created the harm.  It’s a fact that’s not well enough known.

So the Hughes Report bravely incorporates these concepts in what was intended to be a report that would examine a range of options to the government to provide redress for these families. It moved us from a position of what to do, to how we would like the outcomes to be resolved.  I hope the government, when considering the options, bases redress options on the Principles that have been fought for and suffered for by so many. Although unfamiliar at first, and maybe a large and high in calories, this cake feels home made and has a filling to suit everyone.

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