Multifactorial complex suffering and the panoply of NHS pathologies: a masterclass in othering

I’m raging. Absolutely raging (still) at how Kirsten Major, CEO of Sheffield Teaching Hospitals NHS Trust chose to respond to the media following the conclusion of the inquest into the death of Laura Booth. I wrote about it yesterday, you can read it here but please come back.

This treatment of Laura’s parents, this giving of a half baked non-apology and attempting to dismiss the Coroner’s findings, isn’t just a matter of principle, it’s a matter of leadership.

This behaviour, of a senior NHS professional, in response to failings in their hospital, the denial and twisting of evidence isn’t just offensive and immoral, it is actually highly likely to cause further harm to Laura Booth’s parents, Ken and Patricia, and to other patients in their care.

By choosing to behave in this way the CEO is sending a message loud and clear, that Laura didn’t matter, that the cover up that followed her death didn’t matter, that the failure to provide basic nutrition and the neglect that took place in her hospital didn’t matter. The othering and dehumanising of Laura is coming from the top.

I was in court for every minute of the evidence at Laura’s inquest, and live tweeted as much as I could. When I report inquests I offer no commentary or personal view, I literally just sit there and type as quickly as possible. Some witnesses are easier to live tweet than others, they’re straight forward, use short sentences, answer questions concisely and don’t just keep talking and they don’t chuck Latin into the mix (despite being the owner of a long faded GCSE in Latin and Roman Civilisation, yes really, my Latin is rusty).

Some times when I’m live tweeting despite my best efforts I’m faced with a witness who speaks so fast, and with such detail, that I’m conscious that I’m missing an awful lot of what they say. This was the case with Professor Stephen Green, Consultant in Infectious Diseases at Sheffield.

Very rarely when I’m live tweeting do I process what is said in real time, it’s almost like an out of body experience, you have a rough awareness of what you’ve heard in court but most evenings I go back to my tweets to re-read and try to make sense of things. I’ll be honest I found Prof Green offensive, even as I was typing I could feel my body tensing up at the words coming out of his mouth, but I just had to work through that and share as much as I could. In this post I’d like to unpick just one of his responses to one question from the Coroner, looking at what he said, and the language he used. I’ll illustrate it with tweets from Laura’s inquest.

The Coroner asked Prof Green: What was it about Laura that meant the Infectious Diseases ward was the appropriate ward for her? This was a decision that had been made at the point at which Laura’s care transitioned over from Sheffield Children’s Hospital, that if she required admission that the ID Ward would seem a sensible place for her to go.

This was as much of Prof Green’s response as I was able to capture:

This is just the answer to one simple, relatively straight forward question, and how revealing Prof Green’s answer is. I’m going to unpick it a little:

Laura’s journey started before 2016

Where to even go with this, Prof Green works in an adult hospital, every patient he comes into contact with has survived for at least 18 years by the time he is treating them. What is this ‘journey’ he speaks of? Is it some ridiculous service design non-speak, a customer service journey? Or is it a life journey? Or is it part of the inevitable tragic written in the stars that she’d have an abrupt end to her journey? I’ve no idea.

Laura was born with a mosaic variation of partial trisomy 13 which led to Laura suffering from and having to cope with a large number of associated conditions

Laura had partial trisomy 13. In an earlier pre-inquest review hearing we heard how Prof Green in his report to the Coroner had stated Laura had partial trisomy 21 (different gene) and it took Patricia, Laura’s mum, to interject and point out this error. Whether, as the Trust’s solicitor suggested, that was a typo, or whether in fact it was a misunderstanding, kind of doesn’t matter, it shows a pretty poor attention to detail. I digress, let’s get back to Prof Green.

This is the first occasion, of many, where he states that Laura was ‘suffering’ or ‘suffered’ from something. One explanation for this is that Prof Green didn’t see Laura as fully human, in much the same way that one explanation for Kirsten Major’s behaviour and response was because she similarly doesn’t see Laura and her parents as fully human. It appears that there is a culture of othering at play in the Sheffield Trust.

We heard throughout Laura’s inquest that she had a ‘large number of associated conditions’, indeed Prof Green had many different words for saying the same thing, again and again. I can’t help but wonder whether this obsession with complexity is as much a part of the othering, as an acknowledgement of the multiple factors at play.

One of those associated conditions, multifactorial in basis, is Laura had a degree of deficiency in her immune system. I can expand on it if and when asked maam.

This virtual signalling and offering to expand was perplexing to me, it’s stating the obvious, that’s what anyone giving evidence is there to do. This is the first, of many, use of Prof Green of the word ‘multifactorial’, arguably again part of a linguistic tactic to paint Laura as somehow too complicated for this world.

We later heard evidence from Laura’s retired immunologist Prof Egner. Who incidentally the Trust in an earlier pre-inquest review hearing had suggested they may not be able to contact and didn’t feel was required to give evidence because they felt his evidence was uncontentious and should be read under Rule 23. Luckily the Coroner agreed with the family’s request that Prof Egner be called to give evidence, and what he had to say was very revealing. The Coroner summarised in her conclusion:

On the evidence of Professor Egner (Consultant Immunologist) her antibody levels were high and well managed and she was at no greater risk of catching infection than the average member of the population who was not immunocompromised.

So here Prof Green is painting a picture of Laura as this complex creature with a faulty immune system, but the whole point of receiving treatment is that Laura’s immune system was not deficient, she was not at greater risk from it than any other man or woman on the street.

During her life in the Children’s Hospital Laura was cared for by Dr Fiona Shackley, consultant paediatrician in infection and immunology. Dr Shackley had immunology and infectious diseases. You read into record her statement with long list of Laura’s admissions to Children’s Hospitals with long list of conditions.

On a generous day I’d let this pass, but I’m not in a generous mood. One interpretation of this statement is that Prof Green is doing a bit of hero narrative, centring Laura’s medical consultants as saviours, while Laura inconveniently makes use of NHS resources with her ‘long list’ of admissions, and her ‘long list of conditions’. I find his language incredibly revealing, he can’t help but paint a subtext of Laura being a drain on resources, which is interesting given Kirsten Major is a health economist, maybe the culture she leads at Sheffield Trust does consider patients who require care to be an inconvenient drain on resources, as opposed to their fundamental reason for being there.

We deal with large range of conditions, dealing with infection, sepsis, sepsis being a very very key factor today in terms of how we deal with the panoply of challenges facing the health service.

Ummmm, anyone else feel like Prof Green has forgotten that the patients he ‘deals’ with, are humans, not just inconveniences? Where is the awareness that these very same patients, and their families, deal with these challenges and in my experience an admission to hospital is never something anyone looks forward to.

I touched on this yesterday in my blog, Prof Green is a Consultant in Infectious Diseases but appears here to start deliberately using sepsis and infection interchangeably from this point onwards. This seems remarkably dishonest, and deliberate, to me. Indeed later on he goes as far as to state that the terms can be used interchangeably.

Earlier the Trust barrister, Mr Spencer, had informed the court that Prof Green had been on antibiotics for a bad chest and he had a poorly throat, indeed he was taking Strepsils. Notably Mr Spencer didn’t suggest that Prof Green was suffering from sepsis, merely that he’d had a chest infection, one rule for brave NHS men and another for weak disabled women?

Throughout Prof Green’s evidence we heard the term ‘panoply’ and it was pronounced pan-op-olly so it was a struggle for me to spell accurately so apologies for any errors on that front. I had to google it the first evening of Prof Green’s evidence to check what it means. The dictionary definition states ‘an extensive or impressive collection’ or ‘a splendid display’, also perhaps more revealing of the subtext again, it comes from ancient Greek and means ‘a complete suit of armour… of a hoptile or heavy-armed soldier’.

So here we have the heavily armed foot soldier, Prof Green, defending our precious NHS from the onslaught of an impressive display of challenges from pesky patients with conditions, infections and sepsis. Eurgh.

A large number of admissions related to infection and infection disorders… in 2011 Laura had TPN… infection problem… the reason I suspect she had with TPN is in that condition the bowel could rupture so it would be an entirely appropriate manoeuvre at that time in 2011.

Prof Green moves back from speaking about the general attack on the health service of patients daring to live with multiple conditions, he doesn’t mention that Laura died with a hospital acquired infection… an infection that she acquired, in hospital, while as her parents described she became increasingly weak and unable to fight infection and she died, starving, in front of them. So Prof Green moves from the general, back to the specific’s of Laura’s large number of admissions. Laura’s parents gave evidence to the inquest that they’d tried to encourage the staff at the Royal Hallamshire to give Laura TPN and that they told people Laura had successfully received it at the Children’s Hospital previously.

As an aside, I’m not mad keen on the military language either, but I guess it’s part of framing Prof Green and his colleagues as soldiers in this war against patients and illness. He agreed that TPN was reasonable in 2011 ‘an entirely appropriate manoeuvre’ in fact.

During the dialogue, discussions which took place 2013, I was not party to those as a consultant physician, it was my colleague Julia Gregg who worked in tandem with other clinicians… it was agreed as Laura transitioned given many of her previous admissions was to do with infection and sepsis, it was felt the infectious diseases department was appropriate place to provide care if and when that occasion arose maam.

To be honest this alone would have sufficed as an answer to the Coroner’s question in my humble opinion. Prof Green wasn’t involved, but it was agreed given that the occasions when Laura had required hospitalisation before were related to infection that she be admitted to the infectious diseases department. Seems reasonable. Doesn’t quite explain why the ID ward refused to admit Laura on the first occasion that their colleagues in the Eye Ward asked for her to be transferred, but she was transferred to them four days after her admission.

The Coroner tried to clarify what exactly Prof Green had said in his response, and that interaction went as follows:

I’m not even going to comment on this, beyond saying that its just another throw of the multifactorial, complexity card. I could dissect every answer Prof Green gave to the Coroner but I’d rather gouge my own eyes out. Instead a few further examples of the extensive othering at play.

In the record it is clear there was cognisance in the department of the large amount of pathologies Laura had to contend with in her life.

In response to a question from the Coroner about nutrition:

It was part of a broader panoply of issues, a number of health issues needed to be dealt with in opthlamology unit…. nutrition was certainly noted, taken account of, within the context of the records which we had, urgh, consulted as part of evaluating Laura.

This next answer is particularly grotesque to me, in an inquest focusing on someone failing to be given adequate nutrition while a dependent patient in hospital, a consultant using the term ‘a moving feast’. On this occasion ID stands for Infectious Diseases:

That action given Laura was moved to ID unit, it would be incumbent on the ID unit to take action. The care of a patient is a moving feast and we always have to be cognisant things change.

The Coroner had asked about the impact of nutrition on infection and Prof Green gave an answer about paradigms and Laura’s ‘impaired immunological system’. The Coroner sought further clarification and we get this:

In terms of infection and immunological response. The immune system is a complicated entity, in the case of Laura born with an extra chromosome, number 13 in a large proportion of her bodily cells, it has an effect on biochemistry and anatomy. That in itself will effect the immune system although precise reasons are not fully understood and falls outside my expertise maam. There were a number of other health issues Laura had that would impact on the functioning of her immune system.

Within his own answer Prof Green admits this is beyond his expertise, so he doesn’t know what he’s talking about. So why not just stop talking? Prof Green later on admitted he’d researched Partial Trisomy 13 after Laura died, but he also suggested that it was nothing short of a miracle that she’d survived to adulthood. If Laura had been born with Trisomy 13 (not partial) then this would be true, as it stands its illogical to infer that Laura was destined to die at any time, but this was what he said.

In answering why Laura’s death had been notified as an expected death Prof Green neatly displayed his bias and diagnostic overshadowing. This focus on serious pathology and congenital abnormality, excusing away any and all causes of premature deaths. It is this acceptance and belief, this othering, that leads to so many learning disabled people dying from utterly preventable causes such as malnutrition, constipation, scabies, unwitnessed seizures and drowning… in hospital, under the care of these dedicated foot soldiers of the NHS.

The Coroner, to her credit, addressed this in her conclusion on two occasions. She stated:

Laura has been described as a bubbly and happy girl. She and her parents were completely devoted to one another. Laura was plainly a girl who lived her life to the full, and despite the challenges that she faced, appears to have often been in charge in the Booth house. I have heard of Laura being a prankster hiding jigsaw pieces, deciding on family meals (including one which mainly consisted of peas it seems) and having a love of handbags. It would appear Laura also had the final say on where the family would go on holiday. Laura had been diagnosed with a number of conditions all of which made her clinically unique, none of these conditions changed Laura’s need for basic human necessities such as adequate nutrition, hydration, shelter and sleep. She had intolerances to soya, wheat and lactose.

Focus on this point ‘Laura had been diagnosed with a number of conditions all of which made her clinically unique, none of these conditions changed Laura’s need for basic human necessities such as adequate nutrition, hydration, shelter and sleep’.

Laura may have been clinically unique, but regardless of how unique she was, she could not survive without basic human necessities. It is this that the clinicians appear to have missed, and in painting Laura as not fully human, her body merely being a complex pathology of abnormalities and clinical challenges, the Trust view appears to be that it was inevitable that Laura’s faulty genetic stock would give up at some point, and that just happened to be then. Nothing to do with their failure to provide basic care, just inconvenient timing. A myth peddled again in the CEO’s response to Laura’s inquest [produced in full in yesterday’s blog post].

The Coroner addressed this point in more detail, she said:

There was an inappropriate weight placed on Laura’s clinical history and myriad of diagnosis. On any reading, Laura’s clinical background is complex and lengthy. However, at the time of her admission on the basis of the evidence from Professor Lobo, Dr Tattersall and Professor Egner, her main immune conditions were under control and other than minor skin infections she was well. Whilst I accept that once Laura became gravely unwell during her admission it was inevitable that clinicians would need to explore all causes for her condition; it appears to have masked an understanding that her malnutrition was a contributory factor to her demise.

Given the CEO’s response that masking is still at play. Having seen how Kirsten Major has responded to Laura’s inquest I can only conclude that the othering Prof Green engaged in so extensively in his evidence, is cultural, and modelled throughout the organisation. Clearly the current defensive culture at Sheffield Teaching Hospitals NHS Foundation Trust is one based on a foundation of bias and diagnostic overshadowing, an othering of disabled people. I’m not sure its too much of a leap to suggest that learning disabled people would not be safe in their care.

I want to bring this blog back to Laura, as a full human, to end on. So I’m going to end with a photo of Laura with one of her closest friend’s Lucy. Laura who’s school described her as an expert in meeting and greeting, loved people, and she particularly loved Lucy. They had a very special friendship and Lucy’s mum shared on twitter this week:

It was a privilege to know and spend time with lovely Laura. Lucy often speaks of her friend and remembers her with love and sadness. Patricia and Kenneth are inspirational in their fight for justice for Laura.

Instead of presents for her 21st birthday Lucy asked for donations towards Mencap’s #TreatMeWell campaign in memory of Laura, because she wanted to make sure others received the care, support and understanding they need.

I don’t see two people suffering from genetic deviations or serious pathologies and congenital abnormalities, just two young women who should have had their lives together ahead of them. Until the NHS sees learning disabled people as fully human, people will continue to die from malnutrition in hospital. This has to stop.

Lucy and Laura, two exceptional humans, full humans.

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