This question from Liz this morning has resulted in my finishing this blog, I’ve less rage than yesterday and was going to leave it but I’ve so many half finished posts I decided to crack on or it might never see the light of day. Liz’s question is the ultimate one, and one I ask myself all the time, what is the point of inquests?
A couple years ago I had the utter privilege to visit Australia, Canada and New Zealand to learn how bereaved families are involved in investigations into the deaths of learning disabled people. You can find my WCMT Fellowship report here if you’re interested. The report contains a number of conclusions and reflections which it discusses in detail, I’ll just include the headlines here:
- Learning disabled people’s life expectancy should be the same as those without a learning disability
- Reducing the discrimination experienced by learning disabled people and the bias (unconscious or otherwise) of those involved in providing care seems central to improving the quality of care and reducing premature mortality
- There should be as much curiosity applied to the death of a learning disabled person as to any other human being
- There is a need to develop expertise and influence investigators
- Investigations are most meaningful for families when they are timely, robust and genuine in their intent to bring about change
- Immediate action should be taken to reduce additional harm caused to bereaved families by processes of death investigation
- Investigations without improvement are unethical
- Given the apathy to the deaths of learning disabled people, a concerning question is what happens if someone has no family, or has been isolated from their community?
- Information sharing.
There is also a brief overview of some of these points in my submission to the current Parliamentary Inquiry into the Coronial Service.
This weekend I’ve been reliving some of the conversations I’d had on my Fellowship travels (the quotes are lifted from my aforementioned report).
I met with Mick and Ashne from the Coroners Prevention Unit at the Coroners Court of Victoria, in Melbourne.
Mick and Ashne explained the role of the Coroners Prevention Unit (CPU) to be a multi-disciplinary specialist team which provides evidence-based advice to coroners to assist them with their prevention-focused aspects of their investigations and support their contribution to the reduction of preventable deaths, the promotion of public safety and the administration of justice.
They have developed databases for coding the approximately 6k deaths that are processed through the court annually. They shared examples of how their work analysing deaths had led to changes and improvements to policy and law, that had already been shown to reduce preventable deaths.
I also met Professor Joe Ibrahim who is the Head of the Health, Law and Ageing Research Unit at the Department of Forensic Medicine, Monash University Victorian Institute of Forensic Medicine.
Joe and his colleagues are focused on delivering a reduction of injury and preventable deaths in aged care. While their work is focused on the care provided to older people, there are many parallels to those who are learning disabled, something we discussed at length.
Joe was very philosophical about the situation we find ourselves in, and very realistic about why we have failed to make significant progress in this area:
‘The background is things are done poorly and no-one seems to care, and no-one seems to care that no-one cares’.
Joe explained that there is often a sense of inevitability voiced that older people will die soon anyway, or that it is some sort of blessing that they died when they did. This echoes something families routinely report. He said:
‘When looking at injury data… these deaths are by definition preventable and premature but we haven’t yet won the argument that it matters. That line of argument doesn’t engage people, as society we have inherent bias…. It’s easy for people not to engage and tell yourself the person is not like you, it’s a blessed relief for them and their family, it’s down to one off bad behaviour of an individual… as a society we don’t have the emotional impact to deal with things, we go home, turn on the cricket and move on’.
I was thinking of my conversations with Hugh Dillon, a retired coroner for New South Wales in Australia.
Hugh held a strong belief and commitment to coronial processes answering questions for families, respecting the lives of those who have died, and perhaps most importantly identifying learning to prevent future deaths and bring about improvements and change. He explained that the narrative of an inquest is very important, to tell the story of what happened for a family, to contextualise things.
‘Telling the story is a much more human approach [referring to narrative verdicts] we should write the story for the family first of all’.
Hugh offered his belief that narratives in England too often hid the story and to an extent they were disingenuous:
‘they suggest they’re telling the full story but they’re not…. one thing that’s done well in Australia is to contextualise the death’.
The final conversation that I was ruminating on was a conversation that I had with Dr Reuven Jhirad, Deputy Chief Coroner in Ontario.
Reuven had a very public health lens on the coronial process, strongly articulating for the need for investigations to both identify learning and for it to be fed back into the system to ensure that the work of the Coroner’s Office is related to preventing future deaths.
It sounds so obvious, but I honestly don’t think I’d considered inquests as performing a public health service before; perhaps because it so rarely happens with the deaths of learning disabled and autistic people.
What I’ve seen in the inquests I’ve attended is a diligent focus on behalf of the legal counsel for the care providers, NHS Trusts or anyone else except the family, to demonstrate how much better everything is now.
The approach is to literally frame someone’s premature, preventable, negligent death as a learning opportunity, and as far as possible shift suggestions of failings onto the deceased person or their family.
Thomas’s diet
As I’ve said before unfortunately there was no remote access to court for Thomas Rawnsley’s inquest until the last day, but there had been much discussion at earlier PIRs I attended in person about Thomas’s diet. There was a concern that the deterioration in Thomas’s health was linked in part to poor diet and dysphagia (the effectiveness of his swallow). At every opportunity possible in the PIRs I attended mention was made of Thomas’s family taking him for fast food/bringing him fast food to eat. At no stage when I was in court did counsel for the care provider comment or reflect on the diet provided by Lifeways.
I was *very* relieved to hear some sense from the Speech and Language Therapist’s evidence when the Assistant Coroner did her summing up on Wednesday:
‘Family often provided food that didn’t meet requirements, and she felt it was appropriate and a key part of that family interaction’
My notes didn’t capture the full comment but I think from memory she said something along the lines of food being one way that we share, and communicate love, and that it’s very important that families are able to do that [I may have dreamt that though].
We know that Thomas was living in Sheffield, and his family were over 50 miles away in Bradford. His mum, Paula, had to take public transport to visit him and visited as often as possible, but at no stage was that more than once a week, so it seems ludicrous to suggest that the diet provided by the family was a significant contributor to Thomas’s health.
Communication with Thomas
The same speech and language therapist clearly knew Thomas quite well, and was able to communicate with him. She commented that Thomas was a:
‘creative communicator… and used different ways to get his message across… Makaton and speech’.
She felt that all carers and support workers should be skilled and trained in Makaton, not as a one off, but continually. She likened it to speaking Thomas’s language. She provided some training to staff but when a colleague visited later she noted that Makaton was not being used by the staff, and she felt staff lack of confidence was stopping them signing.
The first speech and language therapist also highlighted the connection between Thomas being given PRN (as needed) medication and staff’s subsequent ability to understand Thomas.
It’s sort of logical that if communication is already difficult, and let’s not forget communication is ALWAYS a two way relationship, then if Thomas is overly medicated it stands to reason that his communication would suffer. I also can’t help wonder whether staff’s communication would also suffer at that stage (ever been the judgemental sober one when all your mates are bevvied up, I don’t think anyone puts as much effort into communicating in that situation, in fact I’d go as so far as to suggest you may consider it pointless). Just something to muse on.
Making things up
I just briefly want to touch on this point because I know it’s important to Paula, Thomas’s mum, and I think it’s very indicative of power dynamics, assumptions and respect, or the complete absence of it, for learning disabled people.
These statements are often bandied around at inquests, despite an absence of evidence to support them. The language used to described learning disabled people as aggressive, challenging and dangerous also adds to the othering.
It appears that Thomas, and his mum Paula, had both been branded as trouble makers and accused of making unsubstantiated allegations etc, yet we also know that Thomas was abused, had communicated it and it was Paula’s persistence that led to someone whistleblowing and the carer being prosecuted. I’ll come back to this theme later on.
Prevention of Future Death reports: Thomas
The Assistant Coroner at Thomas’s inquest decided to issue three prevention of future death reports, one to Yorkshire Ambulance Service and two to NHS England regarding safety netting and triaging patients.
There was nothing for Lifeway’s about patient’s diet or lifestyle, nothing about use of PRN medication, and nothing about staff’s ability to communicate with the people that they’re supporting. There was also no requirement for Lifeway’s to upskill their staff in noticing a physical decline in someone’s health, or seeking earlier medical attention.
The Assistant Coroner did state that she would write to NHS England about the lack of availability of trauma informed support for learning disabled people who have been abused. Given that she’d narrowed the scope as much as she had, she couldn’t issue a PFD on this matter, because she’d not considered it in the evidence, but she had ‘noted the family’s concerns’ about this issue.
Joanna’s Diet
In an almost comedic repetition between Thomas and Joanna’s inquest this week, Dr Oyefeso, Director of Clinical Services at Cawston Park, also made reference to families bringing McDonalds to their relatives.
As a side note, this evidence from Dr Oyefeso’s was given after the inquest had concluded and the jury had been dismissed, hence my much more casual tweeting/language/opinions on show.
Dr Oyefeso told the Coroner he’d been the Director of Clinical Services at Cawston Park for 8 years and he said that Joanna’s death was the first one he was aware of. The Coroner then recalled another inquest of a young man whose death ‘had happened within a matter of weeks‘ of Joanna’s. Dr Oyefeso confirmed this.
Which is interesting because the Norfolk Coroner’s Court records show that Nicholas Briant, died from misadventure at Cawston Park, not a few weeks after Joanna died, but in fact 6 months and 3 days after Joanna.
Why am I making such a fuss about this? Because the court was given much evidence by the staff at Cawston Park, that changes had been made as a result of Joanna’s death, that things were now much safer. There was an assistive technology protocol:
Also more emergency response drills:
Joanna dies in April, Cawston Park swiftly act to ensure everyone remaining is safe, and then somehow, over 6 months later, another patient is dead. Were the newly drilled staff any better in an emergency? This is a newspaper report from Sophie Wyllie on day one of Nicholas’s inquest:
It heard that Mr Briant was “pale”, “struggling” and “rolling around the dining room” before that.
At around 7.25pm on October 29, the inquest heard the 33-year-old told staff: “I cannot breath. I’m dying.”
In response to the CCTV, Ms Blake said: “The staff are standing there. Nobody appears to be doing anything. There seems to be a long period of time before any definitive action was taken to assist him. They [Cawston Park staff] appeared to be milling around.”
The inquest heard that a staff nurse got oxygen for Mr Briant but it took “several minutes” for defibrillator to be used in the so-called code blue emergency situation.
During live questioning, family barrister Hannah Noyce revealed two members of Cawston Park staff who helped Mr Briant on October 29 were not up-to-date with their first aid training.
This is an almost identical situation to what happened to Joanna six months previously, staff standing around not doing anything, collecting oxygen but not the defibrillator, ‘a long period of time before any definitive action was taken to assist him’. All sounds desperately familiar.
So here we have the same coroner, Yvonne Blake, and Dr Carter giving evidence, he was the Medical Director who was off sick and unable to give evidence at Joanna’s inquest. The Coroner suggested to a juror who asked why he’d not been there that he no longer worked at Cawston Park, which is interesting given he’s still on their website.
Note that ‘the success of any good provision lies in the strength of the management team and staff’, so surely the converse stands to reason too, and the failings of Cawston Park lie in the weaknesses of the management team and staff?
I digress. Nicholas died over six months after Joanna, his inquest was held by the same coroner, in July 2019. As far as I can tell she didn’t feel the need to issue a Prevention of Future Deaths report (there certainly isn’t one listed on the MOJ database). Yet the evidence heard that staff panicked, that they didn’t respond appropriately in an emergency, and that two members of staff had out of date first aid training.
I find it hard to believe the suggestion that changes as a result of Joanna’s death actually happened, or made any difference to the care provided.
The Coroner also made mention to Dr Oyefeso that since Joanna’s and Nicholas’s deaths there had been a further patient death and that this patient also relied on a CPAP machine. Dr Oyefeso confirmed that was the case but suggested the CPAP machine was not in any way relevant because this patient died from cardiac failure. The Senior Coroner for Norfolk is overseeing the inquest into the third death at Cawston Park.
The Coroner asked Dr Oyefeso about concerns around short staffing, he was at pains to point out that they now only have 12 patients so the staffing requirements were lower. What he didn’t point out is that they only had 12 patients because the Care Quality Commission had taken action to cancel their registration, and restrict the number of people that they were allowed to provide care for during to ongoing concerns for patient safety.
The Care Quality Commission is currently undertaking enforcement action at Jeesal Cawston Park to cancel the provider’s registration and prevent the provider from operating the service. This is subject to ongoing review. The service was rated as inadequate and put into special measures following an inspection in June and July 2019. The service was re-inspected in November 2019 and February 2020, however insufficient improvements were made, and the hospital remained in special measures and a Notice of Decision was issued for closure subject to legal process
I just want to return to the points about Joanna’s diet for a moment. In a very unfortunate use of language Dr Oyefeso commented the following:
Dr Oyefeso was clear that Jeesal do not provide patients with crisps and sweets, just fruit and vegetables. First up the problem I have with this is that sounds like a horrendously dull and restricted life to me. Secondly its never a good look when an inquest is happening for the care provider’s social media accounts to just carry on as normal (there’s some free social media consultancy for anyone who needs it). What gems did Jeesal Group share with us during Joanna’s inquest, why this:
Note the mini cheddars, tunnocks tea cakes, and crisps and what not in the pictures. Admittedly this is not in a hospital service, but it doesn’t suggest that Dr Oyefeso’s confidence about how seriously diet and nutrition is taken really stacks up. Just a few weeks earlier:
Truth be told I’m delighted that Joanna had a Maccy D’s the day before she died if its something she enjoyed. I wouldn’t eat it myself but if she enjoyed it, good for her.
It makes sense that someone’s diet and poor nutrition, is likely to be more closely linked to the 41 meals a fortnight provided by the hospital, than the one meal provided by Joanna’s or Thomas’s , or anyone else’s family for that matter.
We even have evidence that Cawston Park were failing in this regard from the latest CQC inspection:
Staff did not sufficiently encourage patients to maintain a healthy lifestyle, for example to manage their weight by eating a healthy diet and do sufficient exercise. The 2018 Learning Disabilities Mortality Review found that poor quality healthcare causes health inequalities and avoidable deaths and people with a learning disability have worse physical and mental health than people without a learning disability. Therefore, if patients are not supported to maintain a healthy lifestyle this could have a disproportionate impact on their physical health. We were not assured that staff were working closely with the patients to agree and implement healthy living plans or that it was identified as a need in a timely manner, for example, before the patient had gained a significant amount of weight. This had seriously impacted on patients with co-morbid physical health conditions. Both the GP and patients’ relatives had voiced concerns about this.
Dr Oyefeso’s evidence failed to mention this.
Making things up
Joanna was also accused of making things up by staff. In fact we heard evidence that she knew that she was being belittled by the people who were meant to be supporting and caring for her, and that there was a direction correlation between her awareness of this, her stress levels, and her increased seizure activity.
The staff in this supposedly award winning specialist hospital service were mocking Joanna and claiming that she was putting her seizures on.
In a similarly grotesque echo of Connor Sparrowhawk’s inquest the Jeesal barrister took it upon himself to stress to the coroner that there was no evidence that Joanna had a seizure when she died, or had been having epileptic seizures in the days/weeks/months before her death.
This line of argument is 1) utterly grotesque and 2) utterly illogical while also arguing that said person died as a result of an epileptic seizure. I’ve got this mental image of Serjeants Inn running ‘how to argue epilepsy wasn’t a factor when someone has died as a result of epilepsy’ seminars.
Anyhow what was clear, in Connor and Joanna’s case, was that their families were concerned that they were having seizures, that they were expert in recognising seizures, that they alerted staff to their concerns, and that they were (inappropriately) reassured that they’d be dealt with, and both their loved ones died very shortly after, as a result of epilepsy.
As yet, the Coroner hasn’t decided whether she will issue a Prevention of Future Deaths report to Jeesal Cawston Park. I can’t quite comprehend how one wasn’t issued last year and I can’t personally understand how she couldn’t issue one now. It’s not up to me though, obviously.
To take us back full circle, I think if we really want to prevent future deaths we need a much different coronial system.
At the moment when it comes to the deaths of learning disabled and autistic people, even those who get an Article 2 inquest, we aren’t holding wide enough consideration of the evidence.
We rarely see commissioners of care as an Interested Party, or even as a witness.
We see this wide funnel close in and in and in until we’re left with what amounts to a myopic focus, more often than not on the unspoken failings of the person, to survive. We must do better.
I’ll finish with statement from Dr Oyefeso:
‘We comply with the Act as far as we can’.
Which is of course, the entire problem.
You are amazing!