What a week. On Monday Assistant Coroner Abigail Combes delivered a blistering conclusion in Sheffield Coroner’s Court, into the death of Laura Jane Booth. Laura died in October 2016, but there was no inquest into the circumstances of Laura’s death. 18 months later an inquest was opened following the intervention of BBC Breakfast journalist Jayne McCubbin.
Prof Sam Ahmedzai, one of Laura’s former consultants had written a letter of his concerns. Prof Sam had kept in touch with Laura and her parents after his retirement, and visited them on her final admission. He had grave concerns that Laura was starved and did not receive appropriate care. Jayne shared those concerns with the (now retired) Coroner, who agreed to open an inquest.
In 2016 Laura’s death was swiftly swept under the ‘natural causes’ cloak, doctors circled on the death notification form that her death was expected, despite her being a 21 year old woman with her life ahead of her. At the inquest we heard how the clinicians involved in Laura’s care had a chat together and decided her death was natural causes, then they had a chat with the coroner’s office. Years later when Prof Green was preparing a report for this inquest he described having similar chats with clinicians, and the Medical Examiner for Sheffield Hospital, and, under oath he still claimed that Laura’s death was a tragic yet inevitable consequence of her life ‘suffering’ from Partial Trisomy 13.
The coroner picked up on this, she quizzed witnesses while hearing evidence and at her conclusion tasked Sheffield Teaching Hospitals NHS Trust to speak with the doctors involved in Laura’s death certification and find out more about the thinking behind indicating her death was expected, and due to natural causes. The coroner also picked up on the diagnostic overshadowing at play on Laura’s final admission, and still based on the evidence of several clinicians, and now the response of the CEO.
Diagnostic overshadowing is a pretty inaccessible term (which to be fair the coroner didn’t use, I’ve introduced to this conversation) and it refers to doctors or medical personnel failing to see the person in front of them as fully human, instead choosing to focus on a medical diagnosis, or diagnoses, and falsely attribute any concerns with their presentation as being related to that. In a nutshell if you’re learning disabled and trying to access healthcare there’s a good chance that those tasked with providing it to you might not fully consider you and all aspects of your health, especially physical elements of your care, instead becoming overly focused on your learning disability.
In this blog post I wanted to share two examples, what eventually emerged at Laura’s inquest, and another example from a young man called Richard Handley. I’ll also share how the NHS Chief Executives for the relevant NHS Trusts responded.
I’ll start with Richard.
When Richard became gravely ill as a result of constipation, health and social care personnel decided he was having a mental health crisis and needed admission to a mental health unit.
It took a brilliant mental health nurse in the unit he was being admitted to to take one look at Richard and decide he was physically unwell, and insist a doctor assess him. It was at that point that the mental health staff immediately took Richard across the car park to the A&E of Ipswich Hospital, who then also failed to provide him with an acceptable level of care. The coroner at Richard’s inquest found gross failings, missed opportunities and that Richard should not have died.
The coroner, Dr Peter Dean, was clear and direct in his criticism of the care provided to Richard by many of the agencies involved, including Ipswich Hospital. The failures of staff at Ipswich Hospital were described by the coroner as such:
‘from the evidence heard, he should still have survived when he did attend the hospital with appropriate management, and absent complications. Once at the hospital, appropriate initial management and evacuation of the faecal impaction was conducted, and the outcome, on the evidence, should still have been a favourable one but, sadly there were early signs of transient respiratory problems, brief reductions in oxygen saturation in the post operative period, possibly due to the aspiration of small amounts of gastric contents, which were picked up in the Modified Early Warning Scores.
There was a gross failure to act on these scores appropriately which, if the protocol had been followed correctly, would have triggered the necessary escalation to the more senior level of clinical expertise, involvement and decision making that the raised MEWS scores required. Richard, therefore, did not receive the appropriate level of more senior input from the surgical team and additional medical specialist expertise from the Critical Care Unit team that should have occurred following those early raised scores, and there was a missed opportunity to provide potentially life saving early intervention‘ [my emphasis].
How did the CEO of Ipswich Hospital, Nick Hulme, respond to this finding? I’ll just reproduced an extract from a blog post I wrote at the time of Richard’s inquest:
His apology was conditional and mealy mouthed.
He said in a statement to the press, not given to Richard’s family: “I am extremely sorry that we let Richard and his family down in the last 48 hours of his life. I want to give my personal assurance that we have learned from this tragedy and improved the care and support we provide for people with learning disabilities and patients whose health is rapidly deteriorating”.
By making that apology conditional, by stipulating the last 48hrs of Richard’s life, in an attempt to manage reputation and distance themselves from the responsibility they should be taking, Nick Hulme shows how meaningless his apology is. It is about reputation management, which incidentally is why it was issued to the media and not to Richard’s family. It’s a performance, not an apology.
Moving on to Laura.
In Laura’s inquest this week the Coroner found numerous errors and omissions in Laura’s care, I’ll blog again at a later date with more detail, but will just stick with the conclusion and headlines in this post, as it’s all that’s needed to illustrate the point. The coroner’s nineteen page ruling is one of the most detailed and considered I’ve ever seen. It outlines the evidence, a brief background on Laura, her final admission to hospital in September 2016, the relevant law, the eight findings/failings identified and a conclusion. The conclusion reads:
Laura Booth went into the Royal Hallamshire Hospital on 25 September 2016 for a routine procedure. She became unwell whilst she was a patient at the hospital and amongst other illnesses she also developed malnutrition due to inadequate management of her nutritional needs. Her death was contributed to by neglect. She died at the Royal Hallamshire Hospital on 19 October 2016.
Further I am adding malnutrition to part 2 of Laura’s medical cause of death to reflect the evidence which I have heard.
The eight findings/failings were:
- A failure to start feeding charts
- Laura’s nutritional intake not being given sufficient weight or discussion
- Clinical decisions made for Laura unlawfully
- Inappropriate weight placed on Laura’s clinical history and myriad of diagnosis [thats the diagnostic overshadowing I mentioned above]
- Laura should have been discussed in an MDT and a formal plan and strategy developed for nutrition no later than 7 October
- Alternative feeding should have been tried and commenced between 29 September and no later than 14 October 2016
- Decision to not adequately manage Laura’s nutrition was a gross failure of her care… continual failure from 29 September 2016 to her death on 19 October 2016
- Laura’s malnutrition contributed to her death and contributed in a way which was more than minimal, negligible or trivial.
How did Kirsten Major, the CEO of the Royal Hallamshire Hospital in Sheffield Teaching Hospitals NHS Trust respond to this finding. She issued the following statement:
Laura was an exceptional individual who has left a deep impression on all who met her. She was gravely ill with sepsis and this was the cause of her death, but we acknowledge that the decisions on the best method of feeding her were a contributory factor to the timing of her death. Laura was not starved during her stay and our staff worked hard to try and do what they thought was the right thing. However, our processes at the time were not robust enough which meant that there was not clear decision making and consequently, Laura and her family were let down. We regret what happened and we have already overhauled our nutrition service and processes so there is now a clear lead decision maker to review and expedite actions for patients with complex nutritional needs. We are truly sorry for what happened, and we will be responding to all of the Coroner’s recommendations to prevent this situation happening again.
Let’s unpick this non-apology a little.
Firstly, at no point in the Coroner’s ruling does she mention sepsis. In nineteen pages there are 6,494 words and sepsis isn’t one of them, not once. This is a myth that the Trust have tried to peddle throughout Laura’s inquest. It’s part of their diagnostic overshadowing narrative.
Quite mind-blowingly Prof Green stated that sepsis and infection are basically the same thing. Even I, someone with no medical knowledge at all, am aware that infections are common but most are unlikely to kill me. As I understand it sepsis refers to a particular situation where an infection overwhelms the body. Obviously sepsis can, and does, cause death, but there was no definitive evidence provided one way or the other that it was sepsis that caused Laura to die.
We heard evidence that Laura was admitted to hospital with an infection, that she was able to overcome. We heard that Laura acquired a pneumonia in hospital, perhaps unsurprising given she was lying in a hospital bed without adequate nutrition. There was no independent evidence that Laura had, or died from sepsis, it was simply unknown for sure. We also heard that many other things could have contributed to the cardiac arrest that ended Laura’s life, including her deranged potassium levels, ironically that she was admitted with in the first place.
Laura ‘suffering‘ from a ‘life-limiting illness‘ and ‘succumbing’ to sepsis was very much the Trust’s line of argument throughout. This allowed them to conveniently skip over their failures to provide Laura with adequate nutrition.
In a truly remarkable attempt to push this narrative beyond all other, the barrister for the Trust, Paul Spencer from Serjeants’ Inn, insisted on raising it at every opportunity. This in questioning Dr Wong, the nutritional pharmacist who ran the TPN team at the Trust:
‘She had two sepsis in fact’ this interchanging of sepsis for infection is just misleading, and underhand, and illogical. A far more egregious question and answer session with Dr Wong preceded that though.
Paul Spencer tries to get Dr Wong to comment on sepsis. She state’s that’s outside her expertise. Good. Appropriate response.
Rather than leave it be and move on Mr Spencer then makes an outrageous statement, he states: as a doctor does sepsis add a further level of complication and in that moment Dr Wong lost all credibility for me.
Don’t get me wrong I can imagine it’s hard when you’re being badgered by counsel for your own Trust to stick to the truth. To repeat that is beyond your expertise, but it’s still essential. You’re under oath, to tell the whole truth.
Here’s the rub. Dr Wong is a doctor, like I’m a doctor. Dr Wong has a doctorate, a PhD, gained for doing research. She is not a medical doctor. In my opinion she should have pointed that out. Instead she spent about 15mins answering questions about sepsis, which she’d already said was outside her area of expertise.
Whenever anyone says to me ‘Ohhh you’re a doctor’ my first recourse is nearly always ‘not a medical one’. I’ve friends who argue this is dumbing down my achievements/dismissing my expertise etc, but the point is when people say doctor they tend to mean medical doctor.
So Dr Wong missed a very important opportunity to clarify her position, to stick to her area of expertise.
I can’t help think this was a very deliberate misleading and dishonest tactic by Mr Spencer given he continued to peddle this line to every witness that followed. He continued to question ‘Dr’ Wong about sepsis repeatedly despite her stating it was outside her area of expertise.
So back to Kirsten Major, she is continuing to claim that Laura died from sepsis, even though we heard no evidence of this. Do NHS CEOs literally not bother to get into the detail, or are they all so deeply ableist that they can not help themselves but stick to the ableist, diagnostic overshadowing, eugenic undertones?
‘but we acknowledge that the decisions on the best method of feeding her were a contributory factor to the timing of her death. Laura was not starved during her stay and our staff worked hard to try and do what they thought was the right thing’
My mum always taught me that any apology should not contain the word but and that it cancels out anything else you’re saying. It indicates that you’re not taking responsibility and therefore not truly apologising. Just stop it.
Not only is this a mealy mouthed non-apology, Kirsten Major is again reframing/twisting the evidence that we heard in court and seeking to diminish and dismiss the Coroner’s findings.
Firstly, it’s not simply how decisions were made (or more accurately not made) about Laura’s nutrition that contributed to her death. This is a distancing technique. It was the Trust’s continual failure to provide Laura with adequate nutrition that contributed to her death and contributed in a way which was more than minimal, negligible or trivial. As Chief Executive Officer it is Kirsten Major’s responsibility, the buck stops with her, her staff continually failed to provide Laura with adequate nutrition. And she died.
Secondly, the court expert, Dr Patel, pointed out that if the Trust were deliberately withholding nutrition from Laura because of the risks of re-feeding that should have been acknowledged. Kirsten Major states Laura was not starved, but we have no evidence either way, that Laura was intentionally starved or not, because the Trust didn’t follow the law as laid out in the Mental Capacity Act.
Thirdly, the focus on timing. There are two issues with this, one it’s another technique to seek to reduce and diminish your responsibility, and two it’s inaccurate. The Coroner specifically addressed the issue of the timing of Laura’s death when ruling on the fact that neglect was contributory. She stated that she simply could not say whether Laura would have recovered from the hospital acquired pneumonia if she’d been adequately nourished, she couldn’t say one way or the other, she was not guaranteeing that she would have recovered and gone home, she similarly was not saying that she would not have recovered and she would have died. It is simply impossible to say.
The Coroner stated in her written ruling:
I cannot say that Laura would have survived for much longer than the 19 October 2016 or that she would have been well and been discharged home from this admission had her nutrition been managed appropriately however I am satisfied, on the balance of probabilities, that had Laura received adequate nutrition during her admission the outcome on the 19 October 2016 would have been altered.
So Kirsten Major’s statement is not only offensive, but also inaccurate.
It’s also worth noting of course that Laura’s parents, Patricia and Ken, have not received any acknowledgement or apology from the Trust, this was simply a statement issued to the media. Which again makes it clear that it’s not actually an apology but simply a PR exercise, a performance.
I’m going to end with a masterclass of holding Trust non-apologies to account, from the brilliant Victoria Macdonald of Channel 4 News.
This is an interview Victoria conducted with Lesley Stephens of Southern Health after Connor Sparrowhawk’s inquest concluded. Connor drowned in a bath, in an NHS hospital, another learning disabled person whose life was ended due to neglect. The disgraced former Trust CEO, Katrina Percy, and Medical Director, Lesley Stephens, continually tried to deny and diminish the failings.
As Victoria says 2mins in:
Can I just stop you. The point is you’re saying sorry to me, and you’ve said sorry in the press release, but nobody has actually gone and said sorry to the family.
Duty of Candour anyone? Fit and Proper Person? Why is it so hard to just say sorry?