After Dr O’Connell had been released from his oath for a second time, the coroner explained that she had some more Rule 23 evidence, that she wished to read onto the record. This included a number of statements that had been taken by the investigator as part of the Blue Box Associates report.

[As a note, in all my reporting I endeavour to report as fully as possible. I am aware that I struggled to follow some of the evidence in this section, as I do not have access to the court bundle of documents, and they were read at speed, so while what I report is I believe accurate, it will be very partial].

Statements from Blue Box Investigation

C: So we have, I think it was explored but not in great detail, statements from Blue Box to be induced into evidence. There’s quite a lot of them, they’re truncated in some ways, is about interviews Blue Box had with relevant individuals. Coroner reads:

H25[?] in relation to frequency of monitoring and visual checks, had been provided with a copy of the policy. This document is generic… guidance intended to sit alongside more detailed care plan specific to the individual needs of the child.

The policy does not include what amounts to a visual check.

Dated, reviewed and amended January 2024, therefore not the version in place at the time of Mia’s death. Amendments made were to the definition of continuous care… overnight monitoring… link to the AV monitor policy added, audits added.

As set out above Mia’s frequency of monitoring risk assessment identifies Mia is at risk of asphyxiation… should seizures occur at night. Risk to be managed through visual checks to check Mia is in a safe position… No detail in this document or Mia’s care plans of what amounts to a visual check, including  whether a check should be undertaken in Mia’s room… and whether check could be done by a monitor, no indication of what camera monitoring should be undertaken between those visual checks.

I asked Laura Yapichi how often Mia should be checked in accordance with her care plan. She said you’ve put me on the spot, I want to say every 15 to 30 minutes, it’s a long time since I’ve read her care plan….

[missed a section but she said she’d put a cupboard light on]

She would not routinely physically touch Mia to check for breathing. When asked how she established whether Mia was breathing she was unable to answer the question and told me that she could not remember.

In her second interview I asked again her understanding of what checks should be performed at night, on this occasion [she responded that she would] go in to check they’re ok, if they’re awake, asleep, general wellbeing…. At this point she was able to identify whether the child was breathing, so effectively this is going to sound really heartless, you check whether they’re breathing.

During the second interview she confirmed she and other staff would sometimes rely on the camera…. This could occur when could see child moving around on the screen so you could physically see the child was ok because they’re seizures were noticeable.

She confirmed her and other staff in Jasmine House undertook this practice, it wasn’t every check during the night but some of the time. If the child wasn’t moving around, she would go into the room, Ms Yapici commented moving around means they must be breathing.

There is a possibility during that nightshift not all of the 15 minute checks she performed that night were performed in Mia’s room and were instead via her monitor. Ms Yapichi also told me this practice was not limited to Jasmine House and other units in TCT would also follow the same approach.

In her view guidance from nurses and nursing managers was inconsistent about what was expected of staff when conducting checks at night.

[missed a section]

She confirmed the House Manager would have expected all visual checks to be performed in a child’s bedroom.

I’ve read out paragraph 86 before. Going onto paragraph 87.

I asked Ms Yapichi if she understood what 15 minute checks were [missed the wording but it meant for] in Mia’s case. She explained a seizure, becoming unwell… that they didn’t need anything. Just to make sure they were ok and didn’t need personal care… [missed]

89 Nurse Finch in Jasmine House was one of Mia’s named nurses and he also confirmed to me he would perform some visual checks via the camera monitor, rather than in the room.

[missed section]

I asked him how he could ascertain a child is breathing [in a check by monitor] and he confirmed he probably couldn’t.

Again we have the statement from Nurse Claro [?] who worked with Mia, she told me in her experience not all staff perform visual checks at night in a child’s room.

[missed section but she explained they must go into a room to check they’re breathing. She had a pen torch to help].

Nurse Claro confirmed to her, I don’t think everybody follows strictly the 15 minute checks.

Some staff just rely on the monitors and this has been the practice since she started doing night shifts, since 2022.

However had been recent changes and staff were reminded they must perform 15 minute checks… senior management are reinforcing this message.

A number of staff who worked with Mia gave evidence their practice was to perform visual checks in her room. Indeed, we go on with Michelle Pallugna, nurse and Clinical Site Manager who indicated her personal practice was to unzip the bed and not rely on [looking through] the plastic.

The coroner indicated that was all she was going to read but Mr Walsh asked her to read that bit out. The coroner said she had explored it yesterday but would read it anyway.

Explained that visual checks of Mia should be performed in her bedroom every 15 minutes to check she was not seizing, and she was breathing. Through looking for the rise and fall of the chest. Her personal practice was to unzip her bed to be able to directly see Mia and not.. through the plastic.

The coroner said that she had already read out the statement of Azri Cairns and would not read that out again, confirmed visual checks every 15 minutes as it were.

She said Claire Cooper [?] looked after Mia and she understood visual checks required her to go into the bedroom to check for breathing, she would use a torch to assist her.

[The coroner then named a number of other staff members. I didn’t confidently catch their names so won’t publish them, but they all confirmed that they would go into Mia’s room to check her. The coroner then moved on to different evidence].

C: It is in another report, it’s in the interviews, it’s about looking through the plastic, let me try and find those interviews. It was a transcript of the interviews.

H157

This is from Louise Tucker?

Mr Walsh: No, it seems to refer to UP, Uri Paddair [sp?]

C: It’s about the plastic, talked about Mia’s bed, do find it easy to use.. had to lower the bed to use, wasn’t risky … when open zip, yes if something happened to her was a bit harder in … you could see her, was plastic but it was thick, sort of.

Could see the shape of her but couldn’t see features very clearly, could see what she’s doing, if her eyes were open or not, you could see her.

[Missed most of that statement, apologies]

C: And this is the one with pillows in the bed, the following interview by ZG who is Zoe Gardner.

She was lying in bed with that pillow and left… I’ve not seen the dinosaur one in bed with her, but she sometimes had like just a normal standard pillow that people weren’t always able to find the breathable pillow, so if it was gone in the wash then they’ve just put a normal one in.

So, you saw that pillow?

Yes, when she was in her bed and I took it out

[Missed a large chunk]

Point camera to wherever she lay in her bed.

Said always had Mia’s door open to her room.

Understanding check every 15 minutes. You’d need to go into the room, just to make sure she was breathing.

H166 discussion about not all staff understanding pillows.

ZG says she put anti suffocation pillow in Mia’s bed at around 2pm, removed the dinosaur one then. Left her shift at 19:30 before Mia had gone to bed.

Coroner: I’m happy to take any other evidence but that really gives understanding of evidence from other members of the nursing team.

Asphyxia Policy

Mr Walsh: Yes, Ms Shiels mentioned the asphyxia policy, sent through to you, are two lines within it, one of those lines was put to Ms Shiels noting about line of surveillance of young person involves entering the bedroom… staff must ensure adequate lighting so could fully observe, that’s slightly different to what Blue Box appreciated as they had a different policy it appears.

Ambulance Service Electronic Record

C: One last thing, the electronic clinical record from the ambulance service

Mr Walsh: Is this the same as the one right at the end of the inquest bundle? I wasn’t able to download new Caselines so wanted to double check it’s the one I have seen?

C : It’s relating in terms of timing

Mr Cox: I think it’s the same document

C: This is the electronic patient clinical record from the ambulance service, dated xx case start 07:19, call time 06:38, assigned 06:41, mobilised 06: 42, arrived 06: 47, with Mia at 06:49 on 11 September.

There’s a history regards allergies and medication. History presenting complaint cardiac arrest.

Patient has 15 minute checks, patient last seen 06:00 asleep and breathing. At 06:20 patient found to be not breathing and in cardiac arrest.

Temperature 35, blood sugar 18.8 showing keytones.

Mia recognised and recorded to have died at 07:25 hours on the 11 September 2023.

They have further commented staff reported seeing Mia in bed moving at 06:20, 999 call at 06:38, basic life support by staff immediate.

Cause of death discussion

C: Further to any further submissions, that  is the evidence I seek to rely upon. I’m supposed to have been sent your written submissions, but I haven’t received them as yet.

Mr Walsh said that Josh [coroner’s officer] had circulated them at 12:03

C: Thank you very much indeed, do you wish to give oral submissions?

Mr Walsh: Only if you wish me to expand upon anything? I’ve addressed four matters, limited medical cause of death, entirely neutral on this but just as easily fits SUDEP, as to what has been provided by Dr George

C: There’s also an open conclusion

Mr Walsh: Indeed, but in respect of that my submission would be where it is capable of fitting another conclusion, then the guidance would be to provide that.

Madam short form conclusion natural causes, reasons are not always easy for lay person to understand but in the circumstances would be apt.

That aside PFD [Prevention of Future Death] matter, I know you weren’t entirely decided?

C: I’ll hear from Mr Cox

Mr Cox: The position of Bracknell Forest is one of relative neutrality, we are here to hear the evidence of what is for Mia’s death. Submissions to assist you if you think is necessary. I’ve read my learned friends’ submissions, for some reason I was sent them you weren’t, much of what my learned friend has set out is doing what he’s right to do which is emphasise legal tests.

In so far as matters can perhaps assist you on, is how you address any narrative or conclusion you may wish to consider making. This is the sort of case where family certainly would benefit, and generally would be beneficial, is some form of narrative around whatever conclusion you alight upon.

Aside from that really if I can assist you further its really…

Prevention of Future Death discussion

C: I think I am still slightly concerned, despite the reassurances, in court, which is why I want to go back and listen to the recording again, which is why I’m not going to sum up and come to conclusion, about the governance, the governance about supervision overnight and the changes that have been made and whether I find they are sufficiently robust.

Mr Walsh: Madam you have the Frequency of Monitoring Policy in force at the time, prior to inquest the updated policy was sent to the court

C: I’m aware of that, it’s just on the evidence I heard in court, I was not convinced by the robustness of those changes.

Mr Walsh: the principle changes in my understanding of the evidence was mainly within the policy

C: Yes, it’s a policy, it’s about how it’s being implemented, how supervised, what audits done. I was not convinced by evidence I’ve heard is being clearly understood. I’m only dealing with one case, it’s not a secret I’ve been previously involved in another case, it’s for me to make sure my assessment. Is completely independent, based on evidence I have heard here, but there are great similarities.

Mr Walsh: Madam one avenue could be that an opportunity could be given to provide further assurance. If there is auditing material, for example, that could be of assistance, I realise is particular concern of auditing, whether is working.

C: Here we are, very similar circumstances. The second point I have is that I appreciate Dr O’Connell’s evidence, but it appears to be a completely closed shop. In as much as there’s physiotherapy, there’s school, there is a very odd and I’m not sure I entirely understand the arrangement of someone working privately who is a Paediatric Neurologist but Mia is not under a general neurology team. I would expect a child to be under a particular Neurological Team … rather than just refer you to someone who comes and attends regularly, that is of great discomfort to me. You don’t have someone essentially independent, with an NHS service. I’m really uncomfortable about that.

The difficulty, I couldn’t find anything from Great Ormond Street because it wasn’t there. The difficulty of accessing the notes, the difficulty of someone independent of Tadworth being able to review clinical care provided. It is completely enclosed, I’m very uncomfortable about that.

Mr Walsh: Madam, every clinician will be painfully aware of their own autonomous obligations regarding patients. That is mirrored by a myriad of private arrangements between the NHS and individuals or units…. Would never be countenance hiving off all hip replacements to private unit [I think he said]

C: But here’s a child. A child in residential care who has no capacity. That is different to the analogy you’re giving which is a discrete level of care. This is a child who needs universal care for all activities of daily living, and is no external assessment. A decision is made by a Paediatrician, she’s not under the care of clinical geneticists or … [missed].

You say in June Great Ormond Street were involved. I don’t know if any communication with Dr Aylett or not, seems to me a completely closed situation. Biggest issue is clinical governance and the structure of medical management with regards to Mia.

Mia didn’t see someone, didn’t belong to a service, you’d expect someone with Ohtahara Syndrome, I’d expect them to be regularly reviewed by a team in a Tertiary Referral Service, and this didn’t happen.

I can understand it might be easier, might be more straightforward than transporting someone for review by an External Consultant, but there is no external review.

We don’t know what genetic follow up there was. That is of concern to me, and I’m very familiar with medical practice.

Mr Walsh: Yes madam, but any gap of clinical geneticist…  little evidence that was missing.

C: In June 2021 Great Ormond Street was a neurology referral. If you can explain to me Dr Aylett’s involvement  and provide a statement of what her role was in Tadworth. Seems to me an entirely private arrangement for a child who is completely dependent. I’m desperately uncomfortable with that.

Mr Walsh: Madam I’m not aware any organisation has picked up that…

C: No, but it is about it for me. You have to have something that is open and transparent. I fully understand Tadworth has physiotherapy, OT, it has education and has access to various clinicians. Where’s the clinical governance? Where’s the appraisal? Where’s the re-evaluation? I’d expect anyone with similar circumstance to be seen at a Tertiary Referral Service and have that multi-disciplinary care, MDT meetings, decision making and such like. Nothing is there.

Mr Walsh: Madam I accept we don’t have that evidence.

C: It’s not we don’t have evidence. Where do you make decisions in medicine that doesn’t involve MDT. For someone in Mia’s position?

Mr Walsh: No madam, where there are referrals, whether private or not, to specialist disciplines it isn’t necessarily to an MDT. It may be to a consultant who deals with that person. Dr Aylett if she was working as part of GOSH, there isn’t necessarily an MDT but one consultant in a service.

C: I fully understand that. Here we have someone with a life-limiting condition, who has had genetic analysis, who has not as far as I can see been referred to a Tertiary Service. Maybe Dr Aylett could educate me with regards to that. I’d expect someone with a complex condition, totally dependent, would require access to services the NHS can provide, rather than having an outpatient appointment with someone paid privately who is outside the system.

If you wish in the next 4 weeks to provide a statement from Dr Aylett, of what her position is, whether Mia was under Great Ormond Street or was known to that service. I’m concerned. It may be useful to say, it’s not my concern this has caused or contributed to Mia’s death, please be reassured by that, but I am concerned that this is a closed circuit.

Mr Walsh: We can see has been some interaction between St Heliers and the service.

C: There’s been one in June 2021.

M Walsh: yes indeed. I’ll take instructions, I suspect Children’s Trust will try to avail of the opportunity to provide a statement from Dr Aylett.

C: You have 4 weeks, appreciate its holiday time. I’d expect someone in Mia’s case to have a whole set of notes from a Tertiary Centre to be able to see. Provide where that continuity of care is, and I simply haven’t got it. Don’t think I need take it any further.

When I sum up I will pause with regard to PFD, hope response will allay them, if not will write a PFD with regards to medical management and oversight of a tertiary service.

The coroner thanked the legal representatives for their assistance and explained to everyone in court how much help they provide to the inquest process.

C: I’ve laid out my concerns, two principal concerns, I’d take my second concern as being the most concerning, I think things should be much more open and transparent.

Thank you very much indeed for your attendance.

The coroner confirmed that she would sit at 09:30 on Tuesday 6 August to sum up the evidence and make her conclusion.

She thanked Mia’s family for the photographs, for attending and “being such strong advocates for Mia”.

Court was adjourned at 16:01pm.