After a short break the coroner returned to court and asked Dr Elizabeth Herrieven if she had the means to take the oath or affirmation, and which was her preference.
She had the words so the coroner did not need to recite them, and she gave an affirmation. Dr Herrieven was attending court remotely.
C: Can you confirm who you are, what your professional discipline is and what your specialism as it were, expertise is please?
EH: So I’m Dr Elizabeth Herrieven, I’m a Consultant in Emergency Medicine and Paediatric Emergency Medicine working at Sheffield Children’s Hospital. Specialist interest in healthcare for people with learning disability and those who are autistic … postgraduate certificate for adults with learning disability … member of the Steering Group of Down Syndrome Group of UK and Ireland [missed the full title] … member of Down Syndrome [missed … Dr Herrieven listed a lot of professional affiliations, most of which I missed given the speed, apologies].
I have written the Royal College of Emergency Medicine Learning Disability Toolkit, which we encourage all emergency clinicians to use when caring for patients with learning disability.
Also involved with writing guidelines … pre-hospital and ambulance guidelines for patients with learning disabilities and communication difficulty.
National projects, working party with NHS England on resources for healthcare professionals to use when utilising the Mental Capacity Act in caring for patients with learning disabilities … number of other projects on a similar line.
C: Alright. You were instructed in this inquest by myself and you were asked to cover a number of subjects which I’ll come onto shortly, and just to confirm, do you have the court bundle available to you?
EH: I do
C: Yes you do, just to remember body language is great but for purpose of audio recording need to say something so by nodding I infer you say yes?
EH: I do
C: And you also have the medical records supplied in a separate bundle, yes?
EH: Yes
C: In addition, have you been supplied with the documents referred to in court today?
EH: Yes, I have yes
C: You listened to the evidence of Dr Martland today, you haven’t listened to other clinicians in the case, but where appropriate you’ll be informed as to what they said, where is appropriate
EH: OK, thank you
C: You have conducted an exercise based on the records provided in the case, the medical records and furthermore the statements and reports within this inquest, yes?
EH: Yes
C: Right, just to be clear, what I’m going to do in the first instance is cover what your report was designed to do, then I’m going to take you to specifics in it to highlight it, and I will go to your summary and then I‘ll ask you at the end of that whether there’s anything you want to say in addition.
The coroner explained that he would not read Dr Herrieven’s entire report to her, but would take her to key aspects and as appropriate at the end she could add anything she wished to to it, and be asked questions by the Interested Persons in the inquest.
C: OK?
EH: Yes, thank you
C: If I go to the instructions you were provided with by myself
[NB these were at speed, I’ve asked the court for a copy of the summary of the report, in part because something was referred to later and not read onto the record, but if I am granted access I will return to these and update them for accuracy]
1) What standards in relation to care of people with autism or learning disabilities were in place at the time …. hospital care and primary care during final illness episode?
2) any deviation from anticipated standards and care?
3) if yes, what areas compromised by way of any deficiencies, and what likely impact was for the deceased?
4) if identified … what remedial actions need to be taken to avoid recurrence with similar adverse outcome?
5) … any elements of management in this category of patient which would be improved in either primary or secondary care, alright?
EH: Yes
C: Boiling that down, you’ve been asked to provide an overview of the standards for care in relation to individuals, to consider whether any identifiable deviations from anticipated standards of care, and then you’ve been asked to comment on whether there were any elements that actually effected Myles, because you can have a deviation from what is the appropriate standard but doesn’t at the end of the day make an impact.
What ultimately, I suppose I’m interested in was the extent to which anything that should have been done, and wasn’t done, actually had an impact, and whether it contributed to his death. Alright?
EH: Yes
C: Now if we just go through the first question, you’ve set out in detail what standards in relation to individuals with autism and learning disabilities were in place, and you’ve provided, I won’t go through each line by line.
You mention the Mental Capacity Act, the Equality Act, the Accessible Information Standard 2016, Annual Health Checks for people with learning disabilities. You’ve referenced NICE Quality Standard 153 on Multimorbidity 2017, NICE Guidance 158 on Venous thromboembolic diseases in adults from 2021, clinical guidance for frontline staff to support the management of patients with a Learning Disability, Autism or both in the Covid Pandemic from NHS England and NHS Improvement in 2020. You’ve got the Royal College of Physicians Acute Care Toolkit 16, Acute medical care for people with a learning disability April 2020, Learning from lives and deaths, people with a learning disability and autistic people, LEDER
[Unsurprisingly, given the ridiculous non sensical acronym, the coroner had to check the pronunciation of LEDER, I’ve written a lot about LEDER which is all available here].
C: You then reference the work of Doherty et al, Barriers to healthcare and self-reported adverse outcomes for autistic adults in the BMJ Open 2022.
So that’s quite an extensive library of reference points setting out the standards. You then go to your second question… any deviation from anticipated standards of care?
EH: Yes, unfortunately several occasions through Myles’s care in primary and secondary care where the above laws were not followed, and the care fell below the anticipated standards
C: You then go onto the core questions for me in inquest … if yes, can you set out which elements of medical care was compromised by any such deficiencies and likely impact for the deceased.
You’ve gone through and we’re all aware of the ACU admission clerking of August, the discharge summary on 1 September, learning disability progress note 21 October, research team progress note 24 October. You make specific quote there “notice Myles query learning difficulties, may seem minor point but is a difference between learning difficulties and learning disability”
[Dr Herrieven explains the difference in her report and the Coroner reads it out – at speed so didn’t catch, apologies, but essentially that learning disability is a protected characteristic under the Equality Act and is linked to cognitive difficulties, whereas a learning difficulty refers to a specific difficulty processing information, see this from FPLD for more].
C: You say the two terms are used interchangeably through Myles’s clinical notes and that likely indicates a lack of understanding on the part of staff within an organisation.
Respiratory consultation note 25 October 2022, you say there is no entry anywhere in the notes that suggests Myles was not compliant with his medications, clinical team repeatedly made assumption he was not, without assessing his capacity to consent… nor considering whether any reasonable adjustment could be made to support this.
Evidence you haven’t heard but has emerged in evidence over the last few days, particularly from Dr Hardy and indeed Mr Crickmore is well, yes, there were several, there was all the family, mother and Myles were saying he was compliant, and they did operate on the basis he wasn’t.
EH: Yes
C: To be fair I think the witnesses in my observation thus far have all been very candid and made appropriate concessions to the effect that, well for example Dr Hardy has said he made a bad decision about prescribing the appropriate medication and it did affect the outcome. So that is the backdrop I think to the evidence you’ll be giving.
You then have respiratory progress note 25 October, you reference nursing progress note 25 October, you reference discharge letter 25 October, which obviously was copied to Myles, advice given to patient, no mention Easy Read or accessible information, language used include jargon such as “acutely unwell” … [missed] … no mention of Reasonable Adjustments or dosette boxes or medication reminders. You’ve referenced the term delirium in the discharge letter, no information in the notes regarding this, unclear whether true delirium or whether Myles just dysregulated during the admission, or behaviours of distress due to him being unwell in strange environment. For example, could have been psychological condition or behavioural to do with possibly his autism.
EH: Yes
C: You reference note 16 March 2023 Dalton Surgery, telephone call consultation 17 March, GP surgery 20 March. You can see no indication Myles was invited to attend a Learning Disability Annual Healthcheck… at which echocardiogram from the Acute Trust could have been reviewed. Likely missed opportunity to discover the echocardiogram had not occurred, although unlikely anti-coagulant medication would be altered as was recommendation of Acute Trust.
We do know the echocardiogram had occurred. You may have picked up it appeared to be normal, Professor Hunt’s addendum from March this year, the view she takes is in fact the fact it’s normal is in keeping with him recovering form the earlier PE, but otherwise her conclusions stand
EH: Yes
C: What we do know was there was an echocardiogram, what didn’t happen was no follow-up of that, and there should have been one in at least February. In which tests would have been undertaken of the normal nature, would been conceivable at that stage to have considered the development or otherwise of his PE condition and that wasn’t done
EH: No
C: So we have that. You mentioned the statement of Dr Martland, who you’ve just heard, and you then go to the summary and likely impact of deficiencies in care, just want to go through these individually.
It’s assumed you say, in your opinion deficiencies likely contributed, either directly or indirectly to the following:
- It was assumed Myles was not compliant with his rivaroxaban treatment despite him and his family stating otherwise
- Secondly assumed Myles wouldn’t manage taking varying dose of warfarin, no reference to reasonable adjustments required by law to enable him to do so
- Assumed Myles wouldn’t be able to comply with monitoring of warfarin…no reasonable adjustments as required by law
- No reasonable adjustments … before the plan was shared by the clinical team
- No reasonable adjustments made to allow Myles to understand, retain and participate in decision regarding his anti-coagulation treatment
- Unlikely Myles properly understand information based on the assessment by Matron Mckie … could not be trusted, signs of delirium during admission
- No formal best interests process followed
- Inappropriate, inadequate treatment chosen by the clinical team… which likely led to Myles’s death
- Decision and reasons not properly conveyed to Myles’s primary care providers, so they were likely unaware of continued high risk
- Increased risk posed by learning disability, autism and multimorbidity was not recognised in primary care
- Following that, reasonable adjustments such as an early face-to-face appointment not a telephone consultation, accessible information not provided when Myles presented with increasing shortness of breath.
- Myles’s family’s concerns not taken into consideration when he presented with shortness of breath
- A complete assessment was not carried out, may be in part lack of consideration of reasonable adjustments when measuring vital signs… [missed]
- Due at least in part due to a lack of recognition of increased risk and incomplete clinical assessment, an opportunity to diagnose PE in primary care in March 2022 was missed, which likely contributed to Myles’s death. Alright.
EH: I meant March 2023 in the last bullet
C: I assumed that was a typo, you’re confirming that?
EH: Yes it is
C: Is there anything you’ve seen in updated documentation you’ve been provided for in the last week and before your giving evidence today that causes you to modify or change any of those conclusions?
EH: No
C: That’s a no, OK. I just want to ask you to be a little more specific about this, what you said in your summary about likely impact of deficiencies in care. You provided a comprehensive list of deficiencies. You said some contribute directly to the outcome, and some of them indirectly, alright?
EH: Uh hum yes
C: Now I just want you to be a little more specific with regard to what you think contributed directly. I’ve got the bullet point which is 5 from the bottom, an inappropriate and inadequate treatment chosen by clinical team resulting in continued high risk of pulmonary thrombolic event, which likely led to Myles’s death
EH: Yes
C: Can I clarify with you, I’m not building a case, just ask what you think… you regard that as a direct contributor to the death?
EH: I do yes
C: I’ll put this a different way and you can say agree, come back with a qualified approach, or say no you’ve got it completely wrong, which can happen.
Are you saying therefore that had the clinical team done things differently in relation to Myles and his conditions, and had they adopted as they now concede a different treatment, are you saying that the way they treated him, in light of the context of his conditions, are you saying that directly contributed to the death?
EH: Yes. I think that there were several assumptions made, assumptions made Myles was not, and could not, be compliant with his medication, despite him and his family saying otherwise.
There was no consideration to supporting Myles in compliance with medication as stated in my report required by law in the Equality Act.
Warfarin recommended by haematologists as best treatment for him, confirmed by Professor Hunt, but no considerations of how warfarin could be safely prescribed and administered to Myles.
As a result him having learning disabilities, the assumptions were made it wouldn’t be possible and no consideration was given to making it possible. In my opinion it would be perfectly possible to do, because of that the wrong and inadequate treatment was given.
No assessment of Myles’s mental capacity to make decision regarding treatment, I know it’s stated he was happy with the treatment, that doesn’t demonstrate he was able to understand and retain and weigh up that information as required under the Mental Capacity Act.
The information given in notes regarding that decision, comparing two types of treatment is fairly one sided. I am sure there was not enough information there for Myles to weigh up the risks and benefits for himself, in order to take part in that decision.
C: OK, so just putting it a different way, but for the way he was treated, he was dealt with in secondary care, but for that, he would have received a different treatment plan, medication plan?
EH: Yes
C: And if he’d been on different medication that would have changed the outcome?
EH: That’s what I’m saying yes
C: OK. Now I just want to go through that last bullet point, you say due at least in part due to a lack of recognition of increased risk and incomplete clinical assessment, an opportunity was missed to diagnose PE in primary care in March 2023 which likely contributed to Myles death … you identified that as a missed opportunity, yes?
EH: Yes
C: You’re saying available at that stage the ability to diagnose the PE and that was probably the last opportunity he had before his final admission and death to do it, and that opportunity was lost because of a lack of information provided from secondary care?
EH: Yes
C: But also matters concerning what happened between 16 and 20 March in primary care, is that right?
EH: Yes
C: Right, so that’s again, but for?
EH: Yes
C: But for the way he was dealt with between the 16 and 20 March, it is likely he would have survived, is that right?
EH: That’s my understanding and my belief. From the medical notes Myles was having difficulty mobilising due to shortness of breath, that’s a significant symptom for anybody but particularly someone of his age and previous history.
People with a learning disability are at risk due to a number of …[missed] … not just diagnoses and communication difficulties, but our assumptions as clinicians.
We make a lot of assumptions, take on a far more paternalistic role, and although we like to think we act in people’s best interests, we don’t often take their own thoughts and considerations into account.
C: Right ok. Now I think those are the two principle matters which you’ve confirmed, as it were, at the sharp end of your opinion?
EH: Yes
C: They are feeding into the, those of other bullet point conclusions you’ve come to, is that right?
EH: Yes, that’s right
C: Now you then go on, and your final paragraph, paragraph 4, to identify deficiencies in management, and remedial measures that need to be taken in primary and secondary care to avoid recurrence of similar category of adverse outcome. Listed them through to R in the alphabet.
Do you still stand by all those recommendations? Anything you’ve read in statements and reports particularly from secondary care trust, or evidence you’ve read and heard? Is there anything you’d modify them or seem to think that’s taken care of, anything dealt with from what you’ve read and heard?
EH: The elements relating to training, points A, B and C, I understand staff have undergone training … training is one thing, putting it into practice is another, I’d probably re-word slightly in light of the evidence people have undergone training, to suggest those learning points are put into action.
C: Uh hum, so you’d say is needed but need reassurance it’s actually being done?
EH: Yes
C: Anything else?
EH: I don’t think so, no
C: D thru to R are still outstanding, is that right?
EH: Yes
C: Ok what I’m going to do is tender you to the advocates, firstly Ms Hayton
VH: The decision I think, if its agreeable to you sir, is Mr Birch was going to go first to cover the Trust, then I’ll go second?
C: I’m happy with that
Mr Birch checks Dr Herrieven can hear him and introduces himself.
MrB: Just some quick points if I may by way of clarification, you heard this morning the Coroner ask questions of the GP regarding some of the letters we’ve had in court today, and you’ve got them is that right?
EH: It is yes
MrB: Thank you, letter 24 November 2021 is that available to you, at the moment?
EH: It is, bear with me
MrB: 24 November 2021, letter from the South West Yorkshire Partnership NHS Trust Kirklees Learning Disability Service
EH: Yes, I’ve got that one
MrB: The learned coroner was asking questions, one of points arising, will come back to in a moment is the fact Myles does not have capacity, statement made in letter, my reading. The court is more interested in your view, refers to telephone conversation for Myles, reference with Ashley his stepfather but can’t see any reference to conversation with Myles… can you see anything within that suggesting is an interaction with Myles, as well as his stepfather?
EH: I’m just re-reading it now. There’s nothing explicit to say Myles has taken part in the conversation
MrB: So in terms of what’s written down in that letter, is nothing first hand from Myles to your assessment of that letter?
EH: No
MrB: In relation to the point about capacity, hopefully heard several times, you are the expert, it’s right isn’t it that capacity is always time and decision specific?
EH: Very much so. Varies by types of decision making, amount of information required, depth of knowledge required to make a decision. Varies by how someone is feeling, if surrounded by carers in own environment, given information broken down into chunks, may have capacity to make that decision, if in an unusual environment surrounded by strangers asked to make decision in short period of time, may not have capacity to make that decision
Mr Birch then asked a question which I missed but Dr Herrieven responded ‘yes’.
MrB: I’m not wishing to criticise the individual who wrote letter but Myles does not have capacity to consent to treatment in broad terms, may be unhelpful?
EH: It is unhelpful, would be more helpful to explain why person doesn’t believe Myles has capacity and how to support Myles to make decisions
C: Can I pick up on that. So I understand what you’re saying, we all understand capacity is not a fixed thing, its mobile and needs to be revisited and revisited over time in relation to particular decisions about particular things?
EH: Yes
C: So, for example, you can have capacity to make simple meal but not drive a motor car?
EH: Yes, is more about making decisions than carrying out actions, but that’s the sort of principle that applies
C: Exactly, this is a simple statement in correspondence, doesn’t have any surrounding support within the body of the correspondence to explain why that particular conclusion was come to?
EH: That’s true
C: Or about what?
EH: Yes
C: But you go on to say, look, with somebody like Myles, given his learning disability, given his autism, he could have had capacity but needs as it were, you need to create the circumstances in which that capacity operates, is that right?
EH: Absolutely
C: In other words if you just go in and say he seems to have capacity and proceed on that basis, you haven’t created the conditions for his capacity to kick in, is that what you’re saying?
EH: Absolutely. Something like this letter in itself, this sentence isn’t helpful, but it is an indication a clinician would need to pause and re-assess how they feel Myles is, and whether or not they can assume he has capacity in a different situation. It would act as a reminder.
C: I’m just making a careful note, hopefully legible. So effectively you can’t go with the standard he seems to have capacity as far as I’m concerned, you have to take it step by step and create preconditions for it to operate, is that right?
EH: Absolutely, absolutely
C: And hence what we’re calling reason adjustments, which can be very case specific for that individual
EH: Certainly are, reasonable adjustments are very specific to the individual and the situation involved
C: Right, go on Mr Birch
MrB: Thank you for that doctor, teasing that point further, in terms of the Mental Capacity Act we have an assumption of capacity, a rebuttable assumption. When we’re aware someone has a learning disability or some impairment, what may become relevant is reasonable adjustments, my language, to empower that person to make decisions. Have I understood that correctly?
EH: Yes
MrB: Thank you, your kind answer to the learned coroner a moment ago being person centred care, not just treat someone with diagnosis whether learning disability or something else. The level of support they require, heard from GP and evidence yesterday, assessing the individual and communication and adjusting accordingly, is that fair?
EH: Yes
MrB: One discrete point letter 27 June 2022, again from South West Yorkshire Partnership, coding of Myles mild learning disabillity on that first page, on the second page the coroner took to mental state examination, that’s relating to the Mental Health Act not the Mental Capacity Act, is that right?
EH: The mental state examination is like the clinical examination. For example, if listen to the chest if someone is presenting short of breath, mental state do in psychiatric situation, if someone is presenting with mental health problems, in same way listen to chest if short of breath. Psychiatrist is seeing Myles, that’s why they include mental state examination.
MrB: Thank you for that doctor, don’t propose to take you through your report in any depth, it’s in the bundle, page 129
The coroner asked for the internal pagination reference.
MrB: Page 10 of your report I think
EH: Yes, I’ve got it
MrB: Now at this stage doctor, you’re obviously recognising interaction in August and over the page in September, just to make you aware, anticipate you will be aware, Trust wouldn’t have access to the primary care record where learning disability notes are from Summer 2020
EH: No
MrB: You’ll see Trust records, background of Myles provided by him and his father was ADHD and depression, no mention of learning disability on that occasion, not until phone call from Uncle-in-law Mr Black on 21 October, that the Trust was aware Myles had a learning disability. Had you picked up on that point?
EH: Yes there are
MrB: I was then going to ask steps expected, not being aware Myles had a learning disability, not being shared by Myles and his stepfather, perhaps criticism of steps not taken without any knowledge of LD, sorry learning disabilities, based on knowledge available to the Trust at that time, would you expect additional steps to be taken?
EH: Steps we’re talking about are very much needs based, not diagnosis based. From what I’ve understood today if Myles was monosyllabic and unable to take part in long sentences in his communications, it should have been picked up by clinicians that he had some communication difference and likely learning disability … [fuller answer, didn’t catch]
C: It has emerged in the evidence that the telephone communication between Amanda Mckie and David Black on 21 October is detailed, it’s informative, coming from someone who knows what he’s talking about. That’s a crucial moment where it’s all laid out, available in the records that Myles has these issues and there’s resource there, not just in immediate family, but extended family to gain insight. Is quite clear was position from 21 October, are you saying earlier to that had Myles been presenting in way which was akin to that described in correspondence of x June, short sentences and monosyllabic, which incidentally Dr Martland confirmed that was the way he tended to come across, are you saying that alone is enough to trigger a concern something needed to be looked at?
EH: Absolutely yes
C: I’ll just make a note of that. Right.
MrB: Thank you sir. Your evidence, patient specific how individual presenting, information communicated, you’d put great store in that interaction, in absence diagnosis, it’s not about diagnosis it’s about how they’re presenting?
EH: Yes
MrB: You weren’t in court for Dr Ghumro who had interaction with Myles and his stepfather at that time. Dr Ghumro said it was difficult to remember speaking to Myles and his stepfather, is able to have a conversation about recent visit to Greece, doesn’t have he acknowledged a recollection of the words used, but again my understanding was he felt he’d obtained sufficient information for his purposes before handing over care to xx team. … Clinicians turn their mind to does the patient understand what I’m communicating and decision to be made at this interaction?
EH: Yes, although lots of information people might understand and communicate, talking about a holiday to Greece is very different to…
C: Mmmm
MrB: Yes, we’re back to [missed] is captured, Myles’s presentation, symptoms, to inform steps by colleagues who come later, there’s reference to a joke and trying to build some rapport, would expect that normal interaction [missed]
EH: I would yes
MrB: Just briefly then, sorry page 132, just briefly this is the entry on 25 October, just one discrete element of it. Within this second paragraph, no entry within notes to suggest Myles was not compliant with his medication, clinical team repeatedly made the assumption he was not based on his learning disability without assessing his capacity. That’s not something I’ve heard from clinicians in court, although I stand to be corrected, that’s assumption you’ve made based on what you’ve read linked to learning disability?
EH: It is my assumption. I very much doubt they’d have written in notes about someone without a learning disability, says complaint with medication but assurance needs to be assured.
MrB: You missed Dr Hardy, he gave example respiratory patients with asthma think they’re fully compliant, may not be, not saying to make reference to Myles, but compliance is important to check for certain medications regardless whether someone has a learning disability. You’d agree with that wouldn’t you doctor?
EH: I would, I would
MrB: Then [missed] reference to delirium touched on ever so briefly regarding discharge letter, considered records, hadn’t seen reference to delirium, could be reference to dysregulated, distress. The court will hear tick box error for ticking box about delirium, you didn’t see any reference in records of dysregulation in the notes you saw did you?
EH: Not that I can recall without going through them again
C: Isn’t your point the term delirium is something used by doctors, and even coroners occasionally, amongst the general public it is quite rarely used. May be for someone with a learning disability and autism it’s just an inaccessible term, is that right?
EH: Completely, completely
MrB: Nothing further sir
C: Ms Hayton?
Ms Hayton checks that Dr Herrieven can hear and moves her microphone closer.
VH: My name is Virgina Hayton, I appear on behalf of Dr Hardy, as the coroner already informed you… [missed] Dr Hardy has accepted during the court of, his evidence, in his words “he made a bad mistake by continuing to prescribe the rivaroxaban”.
EH: Yes
VH: In your report, coroner elicited information, your evidence today was but for the clinical team making that decision it would have had a different outcome
EH: Yes
VH: That is your belief
EH: Yes
VH: Taking the learning disability out of the equation, looking at medical point of view, decision made continue rivaroxaban on 25 October. Plan from medical point of view from Dr Hardy was supposed to be a blood test in a couple of weeks after his inpatient stay, to check for example, consider the aetiology of the unprovoked thrombosis.
His evidence was at the time, his learning was you couldn’t carry out that test at that time as the results might be affected by the PE at the time. Do you agree with that or should tests be done at the time?
EH: Think question would be better asked of Professor Hunt, PVT specialist, rather than myself.
VH: When Dr Hardy made his decision, he was aware blood test to be taken and an echocardiogram which we now know was carried out. Dr Hardy’s evidence was that would have prompted, should have prompted, a review in 3 months, the coroner gave the date of February
C: Yes 3 months tail end of January, so realistically February
VH: Yes, we note the echocardiogram is reported as normal results, please tell me if this is a question better put to Professor Hunt, had those blood tests been completed and review carried out, bloods would have then evidenced had been recurrent PE, would have been flagged at that stage rivaroxaban ought to have been changed to another medication such as warfarin?
EH: Again, probably best discussed with Professor Hunt, but there was advice that warfarin was the best medication at that time.
VH: Are you able to say if picked up in February that clearly rivaroxaban wasn’t working, that wouldn’t have altered medication to something like warfarin and would have been different outcome?
EH: I’m not clear on your question, sorry
C: I do think that’s a question for Professor Hunt, this witness on information she’s got and her discipline, she’s saying that’s what contributed to whether rivaroxaban was maintained and not warfarin. The rest of it, the question of, ultimately that’s a question for Professor Hunt.
VH: I’ve nothing further around the learning disability and the decision making, thank you
C: Is that it?
VH: Yes, thank you
SC: Just looking at the time [it was 13:12]
C: You’re thinking lunch?
SC: Would it be helpful for witness to have Dr Khokhar’s witness statement?
C: She’s got it.
The coroner checked how long the family thought they’d require for questions of Dr Herrieven. After a timetabling discussion court was adjourned for a 30 minute lunch break.
When we returned to court the coroner explained that it is usual for the family to go last with expert witnesses, and therefore it was over to Mr Chawatama who represents the GPs at Dalton Surgery.
Mr Chawatama introduced himself and asked Dr Herrieven to turn to internal page 19 of her report.
SC: 2nd bullet point, where you say the summary and likely impact of deficiencies you say you recognised were due at least in part due to a lack of recognition of increased risk and incomplete clinical assessment, an opportunity to diagnose PE in primary care was missed in March 2022. Do you mean by that a PE should have been diagnosed by the GP practice?
EH: I mean a PE should have been considered, and relevant investigations and referrals onward should have been made
SC: Thank you for that clarification, following on from that answer would you accept what actions a GP in primary care should have taken, and you’ve indicated about investigations, it’s probably not your core discipline?
EH: My other job is emergency clinician, any young person, aged 31 who presented with a history of PE and shortness of breath, I’d be very remiss if I did not investigate them fully for a PE.
SC: Which you say likely contributed to Myles’s death. What do you base that conclusion on?
EH: No other diagnosis was made to pin the shortness of breath on, at that time. We cannot be 100% sure but could well have been a PE at that time, which caused him short of breath, which then contributed to his cardiac arrest due to PE
SC: There could have been other conditions, evidence of Dr Khokhar
EH: There could have been other conditions, but without referral and further investigations there’s no way of knowing
SC: Would you agree, don’t mean derogatory basis, you’re a clinician and expert, there is degree of hindsight bias and some speculation?
EH: Will always be, however I maintain 31 year old presenting with shortness of breath, and history of pulmonary embolisms needed onward investigations, at least to exclude PE
SC: To be clear that’s different consideration from the question you were asked, direct or indirect causation. The causation part is what I’m referring to in terms of some hindsight and some speculation?
EH: Will always be in these situations. A PE needed to be investigated, and then clear safety netting in a manner understandable to Myles needed to be made
SC: We know from records and seen from chronology in fact Myles didn’t present with difficulties again until around about a month later, 27 days later, there is a gap?
EH: I think it was slightly less than that
C: Can I pick up on that and ask it slightly differently, I think the point Mr Chawatama is taking to you is this, you’ve said look there should have been, given the age of Myles, given shortness of breath, given history of PE, should have been onward referral to have the question of PE properly explored. That’s what you’ve said.
What he’s saying is given lapse of time from 20 March and onset of cardiac arrest, which is several weeks, are you confident in your overall conclusion with regard to the treatment received in primary care, 16–20 March?
Are you confident in your assessment of that, your conclusion, that but for that treatment he received between 16 and 20 March he would necessarily not have died? Given there’s a gap of time between then and a cardiac arrest.
EH: I think it’s very, very difficult to be 100% confident because we don’t know the cause of the shortness of breath at that time
C: Don’t need be 100% confident, something on the balance of probabilities more likely than not. Are you confident on the balance of probabilities, but for treatment of 16 to 20 March, he would have survived and would not have died the following month?
EH: I am. I’ve been asked to report on aspects relating to learning disability and autism. Is my thinking a person presents with shortness of breath, history and learning disability is always going to be more at risk than anyone else.
Depending on what report you look at about a third of patients with learning disabilities will die from something preventable.
Nothing was treated, there was no follow-up, we don’t know what he understood of safety netting, and we don’t know how he was between. I believe this was a missed opportunity to intervene.
C: OK. Go on Mr Chawatama
SC: You just said there doctor, in this instance nothing was treated, but he was on an anti-coagulant and the GPs knew he was on an anti-coagulant?
EH: They did and he was … but it still didn’t exclude a PE in Myles at that time.
C: So not withstanding he was on anti-coagulant, and the surgery operating with incomplete information from the secondary Trust?
EH: Yes
C: Right
SC: Thank you. A couple points on the learning disability aspect, you’ve now seen evidence Myles was on a learning disability register, you’ve seen that now?
EH: I haven’t seen any evidence he was on the register. I’ve seen evidence he had learning disability given to the practice, I’ve not seen any evidence he was on the register.
C: We heard evidence yesterday he was on the register from July 2020
SC: I didn’t appreciate you weren’t here yesterday. He was on register and on community psychiatric team, you’ve been taken to some correspondence
EH: Yes
SC: The correspondence disclosed today can you bring up the letter from the surgery dated 8 November 2022
EH: Yes
SC: From Paula Fisher, Clinical Support and I think you heard Dr Martland’s evidence about the pathway as it were, the coding, putting on the register and doing the annual reviews
EH: Yes. I haven’t seen any evidence he had any annual healthchecks from a learning disability point of view. I gather this was about medication review, not annual healthcheck.
SC: That was the evidence of Dr Martland, that was part of the annual review
EH: I think he said it might have been part, there was no evidence I saw, in the records, that he had an annual healthcheck
SC: Thank you, that’s all the questions I have
C: Thank you, Paul, David?
PS: I’ll go first, I’m Paul Scriven, the uncle of Myles, will concentrate on learning disability. Can I start with training, in training on learning disability would you expect the difference between learning difficulty and learning disability to be part of that training?
EH: It hasn’t been part of training, is very little in undergraduate or postgraduate training … I would expect it to be a standard part of training, people don’t understand the difference, and it tends to go hand in hand with not understanding the risks people with learning disabilities are at
PS: Have you seen good examples of that training, where staff are clearly trained in the difference between learning disability and learning difficulty?
EH: Very much so, there’s an active Special Interest Group at the Royal College of GPs, have been privileged enough to speak to several times, some really good practice in that
PS: Would you say they should be aware?
EH: Absolutely. 2% of our population have a learning disability, when you look at health inequalities people face, we have to be aware of those inequalities and how to balance them out
Paul asked if it should be recorded accurately in the notes.
EH: Would hope they were, more often aren’t, tend to be more accurate when people understand the risks faced by people with learning disabilities [my paraphrase for that answer, apologies]
PS: Is that because if read difficulties won’t apply guidelines, practice and law regarding people with learning disabilities?
EH: Yes. Learning disability is a protected characteristic under the Equality Act, whereas learning difficulty isn’t
Paul then asked if the records presented to the court reflected misunderstanding for patients with learning disabilities.
EH: In both context the terms were used interchangeably, which tends to show is no understanding of what the terms mean
PS: Thank you. Moving onto the Mental Capacity Act 2005 and the Code of Practice that accompanies that. Have been witnesses focused on Key Principle 1, of the Act and Code, that people should be presumed to have capacity. Is correct that’s the key number 1 principle isn’t it?
EH: It is
PS: But isn’t it the case that Principle 2 supports Principle 1… should be applied before assuming have capacity? [fuller question – missed]
EH: Absolutely. Several indications throughout the medical notes that Myles was someone who needed reasonable adjustments put in place in order to help him have capacity to make his own decisions
PS: Thank you. Can you see in all the evidence given by the Trust and Primary Care and in the notes, apart from being put in a side room, any application of Principle 2 of the Code of Practice or the Mental Capacity Act 2005?
EH: No, sadly not
PS: Thank you, can we come on to a specific issue about how time-specific and condition-specific Myles should have been assessed with regards to his ability to understand, not just have information but understand the decision he was making in terms of rivaroxaban and warfarin.
In your professional opinion, based on what we now know about Myles, if you have someone who says in his notes the Mental Capacity Assessment should be carried out based on what you’ve heard from the family, based on someone speaking to you in monosyllabic terms and very short sentences, can you tell me what process should have gone through to assess Myles’s capacity? Just talking to him or something else happen?
EH: It’s a complex set of situations need to happen, need understand how much support a person needs, everyone is different. Was suggested in his notes he have a hospital passport, don’t think have found that passport. It might include information from family about how best to communicate with Myles, whether he needed communication support, some are better able maintain visual information than auditory, Easy Read or symbols or photos might be helpful.
It might be Myles can only concentrate for a short period of time, breaking down into chunks and revisiting over several hours or days might be a technique. Myles might need someone who knows him well to support him to understand things.
Everybody is different, everyone has their own needs, without someone trying to understand those needs would be virtually impossible to be certain Myles understood the information he was given.
The Mental Capacity Act requires a person to be able to retain, understand and weigh a decision [fuller answer – missed].
PS: You couldn’t get from a quick conversation with Myles about whether go on with treatment or do something different with Myles?
EH: No
PS: Can I ask, based on your reading of the evidence and the medical notes in Secondary Care, the hospital setting, apart from Myles being put in a side room, did you see any written evidence of any reasonable adjustments being made for Myles’s condition?
EH: No
PS: Could I ask you the same question for Primary Care, did you see any evidence at all in primary care of any reasonable adjustments being made for Myles’s specific conditions?
EH: No, and in addition to that, the letter I was asked to look at from November 2022 was not in an Easy Read or accessible format, so would have been I assume difficult for Myles to understand
C: Is that the discharge letter?
EH: The letter the GP Surgery sent when they said they couldn’t get hold of Myles, and he needed to make an appointment
C: That’s ordinary plain English but wouldn’t have done the job you think?
EH: No, it wouldn’t have met accessible information standards
PS: Thank you Dr Herrieven. Did you during assessing Myles’s notes and evidence, did you see any examples of diagnostic overshadowing that may have affected the treatment given to Myles?
EH: When we look at the instances around Myles’s compliance with medication, think diagnostic overshadowing there, assumptions Myles would not be able to comply with medication. Didn’t see any other specific examples of diagnostic overshadowing, I think it’s difficult sometimes to unpick where someone has made assumptions, someone isn’t as unwell as they think they are, for example saying not able to mobilise due to shortness of breath might not be put down to learning disability, but not dealt with the same way as for someone else
Paul says that he’d like to explore that more.
PS: Is it the difference between asking and believing someone and that is key in Myles’s case?
EH: Absolutely, he’d said several times, his mother said he was compliant, were no missed doses from the box but treatment decisions made based on that … difference between someone saying don’t take their inhaler very often and a lifesaving treatment decision.
David then introduced himself.
DB: I’d like to start with the statement from the Trust on page 39, entitled VIP Hospital Passport
EH: Yes, I’ve got it
DB: Page 39, paragraph 23. This paragraph says “VIP Hospital Passport couldn’t be found, however from review of the records Myles did not have any significant communication difficulties”. That was produced April this year, in light of the evidence you’ve provided. Wondered what your view of that statement is?
EH: Hospital passport doesn’t just talk about communication difficulties, talks about how best to understand and support someone to feel safe and secure, and how to notice when someone is in pain if they don’t verbalise they are in pain. There’s more to a passport than communication. From a review of the records they couldn’t see any significant communication difficulties, that doesn’t mean there weren’t any, and it doesn’t mean [missed] how much he understand investigations, whether he required someone to talk about beforehand, assume mostly planned investigations, we can’t see from those statements
DB: Just to be clear, the Trust say however from review of the records Myles did not have any significant communication difficulties or problems with medical interventions
C: Can I take over at this stage. Do you agree with that, or not?
EH: I think it’s very difficult because I’ve not seen the full hospital notes, in the notes I have seen communication difficulties are not mentioned, that doesn’t mean someone doesn’t have them. He’s had a number of procedures in the past, not mentioned how well he tolerated those procedures.
No reasonable adjustments are mentioned, doesn’t mean he didn’t require them, means they weren’t put in place, it’s difficult to prove a negative, is much easier to pick out positive information.
C: Go on David
DB: OK, on page 54 of the pack the Trust state about Myles … about his rivaroxaban, again described he took it regulary, the after action review felt on the balance of probabilities the patient had capacity to engage in the conversation about his treatment plan … what’s your view on that?
EH: It’s complete nonsense. You can’t retrospectively assess someone’s capacity
DB: Thank you, I think it’s important because it’s part of the Trust’s after action review, page 65 in response to questions we posed to them. There’s paragraph 9, part beneath, in regards to our questions on capacity, it says number of different staff reviewed and had discussions with Myles, no records in the EPR [electronic patient record] about [missed]
EH: Again, difficult to answer as I wasn’t involved clinically with Myles but from what we’ve heard about his usual communication it would be a difficult decision to make without a proper assessment of his capacity
DB: Thank you, one more on this, page 66 paragraph 11, as you know I contacted the hospital and explained Myles had learning disabilities and would like to be kept informed.
Myles is felt to have capacity and his mother his NOK [next of kin] was involved in his care, as such nothing to indicate the involvement of any other family members was appropriate. What’s your view on that statement?
EH: I would disagree with that statement. Having read the information from Matron Mckie, it was clear from that further support was needed for Myles and his mother.
DB: Dr Hardy believed his role was to decide on the treatment Myles should have. Could you comment on that please, whether it is appropriate?
EH: That’s not an appropriate response for anybody’s treatment. If Myles was assessed not to have capacity to make that decision, and a best interest process was followed, Dr Hardy’s opinion would be taken into account, alongside other information sources as part of the best interests process, but that didn’t happen.
David then said that he wanted to ask about Primary Care.
DB: Witness statement of Dr Khokhar, on 2nd page, paragraph 11, describes telephone conversation Dr Khokhar had.
He told us when a witness he’d met Myles once previously, but maintained in evidence this telephone assessment was sufficient for him to determine Myles understood what was going on, and to make a treatment plan.
Would like your view on what you think about that, and what reasonable adjustments might have been appropriate and should have been made?
EH: For someone with the communication differences described Myles had, along with learning disability, would be very difficult to be sure information was received and understood by Myles himself… best practice here would be face to face appointment, if not possible direct to [missed] or A&E. There is so much communication you can’t get from over the phone, can pick up in person
C: Are you saying it was just unsafe, or it wasn’t best practice, could have been done differently, but was fundamentally safe?
EH: I don’t think it was safe
DB: The day before that Myles’s stepfather rang in the morning regarding Myles’s symptoms. Just like to ask what should have happened that day given his learning disability and history?
EH: Given his history and that fact he’s higher risk, even without previous PE, to hear someone has shortness of breath I think that’s a very long time to wait to get in touch with someone, and I think it’s an unsafe length of time
DB: Just finally, regarding the care Dr Martland provided to Myles, in particular safety-netting and follow-up. What adjudgments would have been appropriate for Myles?
EH: With regard safety-netting and follow-up, I wasn’t privileged to meet Myles, would expect written safety-netting in simple terms, would expect family member to be involved in conversation and planned follow-up, whether face-to-face with that doctor, or other means, to ensure things weren’t getting worse or missed
DB: One final question Myles died in Calderdale and Huddersfield A&E in April. What should that have triggered in the Trust?
EH: Any death in the Emergency Department needs to be referred to the coroner obviously, and consider whether anything in recent history would suggest need do some kind of assessment or investigation as part of our own governance procedures.
I understand there weren’t anything, no datix’s or reports, however was period of time between Myles’s admission with PE and his later death, so that might not have been triggered immediately, but when the post mortem results showing PE were available, that should have triggered governance procedures.
PS: Would you have expected a LEDER review to be triggered?
EH: Absolutely I would
PS: Having read evidence were you surprised one hasn’t been carried out even though was put forward?
EH: Sadly, I’m not surprised one wasn’t carried out, LEDER has done some good work, but numbers are very low. Getting people to refer seems ongoing struggle and getting reviewers for those processes, again seems ongoing struggle.
There were no further family questions.
Mr Birch had a matter arising.
MrB: One minor point for this witness, hopefully everyone in court is aware the trigger for investigation isn’t done by the Trust it’s done by LEDER, have I understood that correctly?
[I’m not sure what is meant by the ‘trigger for investigation’ but Trusts have an obligation to notify LEDER of deaths of learning disabled patients in their care. We’ve not heard any evidence when I’ve been in court that the Trust did notify LEDER, or indeed conduct any internal investigation except when pushed by the family].
EH: I’m not involved in LEDER myself but that is the process as far as I understand it
Mr Chawatama also had a matter arising.
SC: Just one clarification, letter 8 November 2022 and your comment in relation to clarity and easily understood nature of that letter. In fact he did attend for medication review on 14 November, is in the records
EH: Yes, I understand he attended for medication review, not for the annual healthcheck you suggested earlier on
SC: I was referring to your inference about Easy Read and that letter, it did result in him acting on it.
EH: It resulted in someone supporting him and him acting on it, we’re not sure
Paul then wanted to explore communication from the GPs further too.
PS: You also saw communication from the GP Practice in text that didn’t meet Accessible Information Standards of 2016, is that correct?
EH: Yes, that’s correct
C: I can’t see any communication put in front of Myles, with or without support, in any way structured or phrased that take into account his conditions?
EH: I agree
C: Have you seen anything at all that was written with his conditions in mind?
EH: No, I agree
C: Right, thank you for your report and clear evidence, I appreciate it
EH: Thank you
The coroner wished Dr Herrieven luck with the rest of her day and she thanked him for accommodating her [I believe there had been a switch to the scheduling].
The coroner then commented that two of the Trust people had left the court and checked with Mr Birch whether he needed to take a break. Mr Birch told him that “they had wanted to hear the evidence of that witness but needed to get back to clinical duties”.
The coroner checked if anyone else needed a break. No one did. The next witness called to give evidence was the GP Expert Dr Hykin.
[My hands and eyes are both tired so I think it’s highly unlikely I’ll get to writing up Dr Hykin’s evidence today. I will try to do so over the weekend. After her evidence court was adjourned. Part 2 of Myles’s inquest is scheduled to take place in June. With thanks to those reading and sharing the reports from Myles’s inquest, and as ever my gratitude to those supporting my work through a monthly donation or one off payments, I couldn’t report without you].