Thread by @nickwallis

I am at St Pancras Coroner's court in London for @5_News for the inquest into the death of 14yo Amy Allan. Amy died last year as a result of complications following surgery at @GOSH_intl. Amy's parents believe serious mistakes were made. The hearing is due to last 3 days.

@5_News @GOSH_intl For an introduction to Amy’s story (and pictures) of her, read this blog post by campaigner and activist George Julian: georgejulian.co.uk/2019/08/28/the…

A skeleton argument from the families counsel has been handed to the court, and GOSH counsel says they have not been able “to form a settled view” on them, given they have been seen at “the 11th hour”.

The family appears to want expert evidence admitted to the inquest. GOSH counsel suggests that if the report strays into causation (which the family’s counsel contends it does) and it is going to be admitted then there should be a different expert report written by another expert

GOSH barrister says GOSH is not trying to shut down a proper examination about what happened in this "terrible case”, but that it should be done in the right context, by the right person for the right court.

GOSH barrister asking coroner what he might require the report for. Suggests the report might be unnecessary to proceedings.

The author of the report (a Dr Playfor (sp?)) is in court and the family’s barrister wants him/her to be called today.
Family barrister says there is a factual dispute at the heart of this case, which is within the coronors purview.

Family barristers says that formal position from GOSH is that referral to emergency life support was made “very promptly”. That is a factual dispute at the heart of the case. We say it wasn’t.

Family barrister says the expert report supports family position and he is concerned that the official report does not represent the whole view.

Family are concerned the GOSH complaint response had items removed from it that Dr Playfor identified them.

Coroner says he will deal with this submission (re allowing the expert report to be considered) at lunch.

Coroner reads from Leigh Allan (Amy’s mum)’s witness statement.

Mum describes a daughter who wasn;t expected to survive pregnancy, and was then given a few weeks to live after having surgery aged 9 weeks. Doctors in Glasgow nicknamed her their “constant source of embarrassment” as she continued to exceed their expectations and live a full...

and happy childhood.
Describes the decision taken by the doctors to give her surgery last year at GOSH to correct spinal curvature as GOSH had an on-site emergency care set up, which might help if her heart condition caused complications during/after surgery.

Describes Amy’s activities as a volunteer and her determination to have a career helping people. Amy had lots of medical problems but "Apart from taking tablets 3 times a day you would hardly know Amy had these conditions… her attendance at school...

… never went below 95% and for a few years was 100%.”

Amy went to a normal school where she took part in all classes, inclduing PE. She was “never going to win awards for the 100m but she did it.” Amy also loved
loved netball, ice-skating and swimming.

She liked interacting with her friends on snapchat and loved social media.
Mrs Allan learned on the day of her operation Amy had been nominated for a Young Volunteer of the Year Award. It has since been named after her.

As a family we have been devastated - Amy was a well and happy teenager and we believe she was destined for great things. We are struggling to cope with her loss. Her 9yo brother Ryan has been hit particularly hard.

Mr Mark Harris, Consultant spinal surgeon at @GOSH_intl first to give oral evidence. Describes meeting Amy at his clinic in May last year. Says she told him the pain she was getting from curvature in her spine had her in tears most days, but she could walk.

@GOSH_intl Mr Harris discussed surgery and gave a view and felt surgery was reasonable on the basis she would require a thorough pre-op investigation so the risk/benefits could be assessed. It might be that the risks might be to great so we wouldn’t offer surgery.

@GOSH_intl It was left that Amy should attend spinal investigation day on 28 June 2018. Where members of multi-disciplinary team would give a risk profile to see whether surgery would be of benefit and then relay those risks to Amy and her family to see whether or not to proceed.

@GOSH_intl Coroner: so you and her family could reach an informed decision?
Harris: yes - it’s very rare spinal surgery is mandated - there’s always an element of choice based on various factors.

@GOSH_intl After investigation day, the opinions of the specialists involved are related to a multi-disciplinary team meeting (to which Amy’s carers were invited) to discuss everything. Two meetings of this sort. Harris attended both these meetings.

@GOSH_intl Cardiac intensive care and Paediatric intensive care unit consultants did not attend. Former not usually invited and latter usually invited but wasn’t there.

@GOSH_intl Risk profile from anaesthetic team in Amy’s case was marked red. Red is very high and means at least a 20% chance of death.

@GOSH_intl Harris says this is very high for spinal patients and we would be very reticent in offering surgery for such a high risk. So at that point we weren’t going to offer surgery. However further investigations including a cardiac MRI was proposed.

@GOSH_intl The MRI scan showed nothing that would make the risks worse.
Mr Harris said at this meeting a smaller-scale operation was proposed (operating just on Amy’s back).
Coroner: was the risk profile reassessed?
MH: Only that it would be reduced.
Coroner: by how much?

@GOSH_intl MH: it wasn’t specific but it was agreed they were reduced enough to go ahead with the op. It was also agreed that the likelihood of ECMO (emergency intensive care) would be unlikely to be needed in the agreed scenario.

@GOSH_intl But that it (ECMO) would be a viable course of action if required.

Then there was a consent meeting between consultant and Amy’s parents at which the surgery proposal was outlined.

@GOSH_intl 15 August 2018 - consent was given by the family for Amy’s surgery. She was admitted 3 Sep 2018 for surgery the following day.

Surgery went ahead and went well. MH says it was seamless, relatively low blood loss and very stable under anaesthetic.

@GOSH_intl MH was putting metalwork into the bones, and manipulating the spine so that as it grew the bones would fuse together.
Coroner: any problems with this?
MH: No
Coroner: was this a long or short op?
MH in terms of a two consultant op, this was completely standard.

@GOSH_intl Coroner: were you aware of any problems with Amy’s heart?
MH: no

Amy was the only op that day.

Coroner: then what?
MH: at the end of the op there’s a formal process of signing out. we discuss what happened, any problems there may have been and care going forward in general...

@GOSH_intl …. terms.
MH: the plan was for A to go to the paediatric intensive care unit, as agreed at the multi-disciplinary meeting.
After the sign out I went to speak to the parents and told them we thought things had gone v well and she was going to the paediatric intensive care unit.

@GOSH_intl MH: that was about 3pm and at about 5pm before going home I went to see her. She was still asleep.
Coroner: did you have any concerns - did she look okay.
MH: she looked fine and I had no concerns.

@GOSH_intl MH now being questioned by Mr Ramsay - barrister for the family.
Ramsay: so reason amy was being op’d at GOSH was because of the availability of ECMO.
MH: yes
R: otherwise the surgery could have been performed in Edinburgh
MH: yes

@GOSH_intl R: so there were four meetings before A was operated on. Could there have been any pre-op assessment by ECMO?
MH: she could have
R: but she wasn’t at any stage pre-opped by the ECMO team
MH no
R: so you had advice from cardiology, but no ECMO. Do you think that...

@GOSH_intl … should happened.
MH: yes
R: why
MH: because they could have given her a scan, looked at the anatomy of her neck and given me information and fed it back into the meeting.
R: is that an ultrasound scan?
MH: yes

@GOSH_intl … I think so, but that would be a question for the ECMO team.
R: given that the only reason the surgery was being performed at GOSH, there should have been a pre-op assessment by GOSH to see if she was suitable for the op or not?
MH: yes there should have been an ECMO pre-op...

@GOSH_intl … assessment.
R: so when you had your consent meeting you were proceeding on incomplete info
MH: not sure, because I am not sure whether the scan would have shown Amy’s neck was normal.
R: but how can informed consent be obtained in this case if the very thing that...

@GOSH_intl … has driven the need for Amy to be there, was not done.
MH: I think the scan should have taken place, but I don’t know it would have changed things.
R: why say then that even if she had had an ECMO pre-op it would have led to a decision that the surgery was safe?

@GOSH_intl MH: we have discussed this with the ECMO team and they themselves said that it would not have changed their advice wrt to proceeding to surgery.
R: that’s after the event.
MH: yes

R: can you comment on whether she was stable when you saw her last?
MH: I think that’s outwith...

@GOSH_intl … my area of expertise.
[sorry, stable enough to be extubated - extubated means the removal of a breathing tube after an op to allow natural breathing]
R pushes MH about this. MH says from the information he requested and was given he was satisfied she was okay.

@GOSH_intl 6am the next day MH gets a call saying Amy has deteriorated significantly overnight and would be placed on ECMO intensive care.
MH did not enquire when she started deteriorating and was not surprised she hadn’t already been put on it.

@GOSH_intl R taking MH back to a referral made when Amy’s surgery was being considered at GOSH and the reason for it - GOSH had an ECMO - was not listed on the form.
R: why? or why not?
MH: omitted by accident - no reason...

@GOSH_intl … it should not be submitted, except that the form asks for co-morbidity and ECMO is a treatment.[the parties, directed by the coroner try to find the specific document]

@GOSH_intl [we can’t. they move on]

R: when you were told she was going to be placed on ECMO you weren’t told how long the deterioration had gone on for.

@GOSH_intl MH: no
R: assuming she was extubated around 11.30pm and deteriorated shortly afterewards and you were told at 6am she was going to be put on ECMO were you surprised she was not already receiving it.
MH: outwith my expertise. expect she would benefit from getting it asap.

@GOSH_intl R: just to be clear you’ve seen nothing in writing to say had she been pre-op assessed for ECMO there was nothing to suggest Amy would not be suitable for surgery.
MH: no
R reveals GOSH Feb 2019 in which it is flagged that had Amy been pre-opped by ECMO she would not have been...

@GOSH_intl … considered suitable for surgery.
R: has he seen this email?
MH: no, nor have I heard of it.

[MH now being questioned by GOSH barrister]

GOSH: what was Amy’s condition
MH: spine curving significantly.
GOSH: what if she weren’t operated on
MH: it would have progressed...

… it would have been painful and it would have made standing progressively difficult. Importantly it would put pressure on her heart and lung cavity, which as Amy had significant heart and lung problems that would have been a problem.
GOSH: would she have lost the ability to...

… walk?
MH: can’t say that for sure, but given she was already by that stage using a wheelchair
[parents intervene to say she never had a wheelchair]
MH: that’s my misremembering of the situation, then. I thought she ws in a chair.
GOSH: how did she feel about her condition.

MH: distressed. she didn’t like the idea it was going to get worse.

Mr Mark Harris leaves the witness stand.
Dr Jonathan Smith from GOSH called.

[please note that unless anything from these proceedings are in "direct quotes" they are not direct quotes. They paraphrase and summarise what is being said.]

Dr Smith is a consultant paediatric anaesthetist.

Coroner is questioning Dr Smith on Amy’s conditions - says they’d never seen the two pathologies presented before in the context of spinal surgery which is why we thought risk were very high.

Coroner: Did you view change much from that 20% risk of death?
JS: yes, because the decision not to go into the chest - just the back, reduced the risk
Coroner: by how much
JS: can’t put a number on it, but enough for us to offer the surgery.

Coroner: did anything concern you during surgery
JS: we thought the heart function remained pretty good throughout surgery, there was a short moment when the heart started a different rhythm due to lowering blood pressure, but we were able to rectify that in 60seconds.

Coroner: what advice did you give re extubation
JS: she should be pain-free, warm, cv stable, wound stopped bleeding etc
Coroner: what other instructions?
JS: we don’t hand over a huge amount of instructions - they are experts in their field [in paediatric in intensive care]

and things can change very quickly.
we asked for an echo examination of the heart and we were very happy with the function of the heart. It was normal.
"Coroner: so there was nothing which happened during the op which led to an irregularly functioning heart thereafter?
JS: no"

Cor: to what extent is ECMO expected to be on standby after surgery?
JS: first time I’ve ever seen it for elective surgery
Cor: did anyone mention this? was there any discussion about it because it was so unusual?
JS: no

ECMO = Extracorporeal membrane oxygenation

"The ECMO machine is similar to the heart-lung bypass machine used for open heart surgery.... membrane oxygenator is a piece of equipment which delivers oxygen into the child’s blood."

gosh.nhs.uk/medical-inform…

Cor: what did you think was likely to happen to Amy as you left the unit that day.
JS: I wanted to see the consultant on the ward at 4.20pm to make sure Amy was okay
Cor: so there was consultant/consultant handover?
JS: yes. physiologically she was stable, but her heart...

… was quite fragile at times.
[JS wanted to make sure that the people he dealt with and spoke to were aware of her case]
Cor: was there a clear plan put in place before the team could proceed to extubation. were there mandatory requirements.
JS an echo would have been nice...

… there’s a ward round, and then a plan is made for the patients in their care.
Cor: it wasn’t a plan you made - and you weren’t mandating requirements.
JS; no I’m not an intensive care expert I’m an anaesthetist. I had suggestions - an echo scan, get the cardiology team to see

… her, but that’s where our mandate stops.
Cor: do anaesthetists sit at the bedside during extubation
JS: sometimes
Cor: could that have been a consideration in this case
JS: it could have but I’m not sure what it would have added.
[Coroner has finished, Mr Ramsay, family...

… barrister on his feet]
R: is it fair to say that Amy should not have been extubated when she was.
JS: we discussed this as a team. Initially I was surprised at the time of the extubation and I came to the conclusion that decisions were made that Amy was awake and pretty...

… much asked for the tube be taken out. And as a non-intensivist I normally take the view that they are right.
[asking about the decision to send Amy to Paediatric intensive care rather than Cardiac intensive care where ECMO was available. takes him to an email released under...

… disclosure dated 14 November 2018. It is an email from JS to the complaints team]
R notes that the decision to take Amy to paediatric intensive care was a decision taken because cardiology said she didn’t need to be in their intensive care, even tho it was reqested.

[This was accepted at the pre-op discussion, and it was understood that the ECMO would be available even in paediatric intensive care.]
R: is it right ECMO didn’t even know about Amy until AFTER she deteriorted aft the op.
JS: that’s my understanding
R: given the whole reason...

…. Amy was at GOSH was because of ECMO support, can you explain why ECMO had no idea she was having the op.
JS; no I can’t.
R: do you defer to the PCU specialist as to whether extubation should have happened when it did?
JS: initially I disagreed, but I also accept they

know more about these situations than I do, and I accepted their reasons for doing it when they did.
[R takes him to an email written by JS’s anaesthetist colleague 14 Nov 2018 to the complaints team]

The email makes it clear there were problems with Amy’s health at the time of extubation and concludes: "That is not chemo-dynamically stable - do not send what you have written to the parents as it is inaccurate and misleading.”
R asks if he agreed with the email...

… at the time it was written.
JS: yes.
Cor: has your view changed.
JS: stepping back and looking at it in the round he can see how complex it is
Cor: but do you still agree with that email?
JS: yes.

[R takes JS to an email post a Morbidity and Mortality meeting held after extubation, whilst Amy was on ECMO but before she died. R suggests the person who carried out the extubation was not at the meeting. R agrees. It turns out the person who carried out the extubation has...

… gone to India and is not available to the inquiry. R lists the upshot of the M&M meeting which lists a litany of procedures which were not carried out prior to the extubation. R asking JS about some of them and what effect they would have.]

R there appears to be a suggestion from the PCU team that Amy was to be extubated “as soon as she was ready” which is sooner than what you expected?
JS: yes there was a phrase “early extubation” which was being confused with “extubation when ready"

[sorry had to deal with something else - JS is talking about how weaning and extubation can take hours and sometimes days, and if the understanding was that if the weaning and extubation went poorly in Amy’s case, the ECMO back up would have been available...

… R has moved onto an email JS wrote which is a “pretty comprehensive list” of the issues which needed flagging.]
R: and you end…
Cor: well we know how it ends and it is a long list so could you be a bit more specific in how you ask the questions...

[unfortunately I’m going to have to leave the live tweeting as I have other matters to deal with. There are other journalists in court. I will reporting the Amy Allan inquest for @5_News at 5pm tonight.]