The coroner called Dr John O’Connell to the stand after the mid morning break and he swore an oath. The coroner asked him to explain who he was and his qualifications.

He told the court he was a consultant paediatrician. He had started as a general paediatrician, had worked for the NHS most of his life until he retired. He used to be a consultant at Epsom Hospital and he told the court he was familiar with The Children’s Trust way back then.

When he retired he said he was invited to take up a locum post with The Children’s Trust for a bit and has “been there since really”.

C: In terms of being a paediatrician, did you have any specialist interest in neurology?

JOC: No. Just general paediatrics

Dr O’Connell confirmed that he worked at The Children’s Trust three days a week.

C: Thank you very much indeed. What is your role as a paediatrician with no specialist knowledge, not a paediatric neurologist, within the Trust?

JOC: At The Children’s Trust I lead a team of junior doctors who share the day to day care of the children there and liaise with tertiary neurology teams responsible for the special child

C: Thank you. What was your understanding of Mia’s underlying medical condition?

JOC: She’s an extraordinary girl really, she’s beaten the odds most of her life. She was late diagnosed with Ohtahara Syndrome, presented with late onset epilepsy and developmental, global developmental delay, and she’s usually looked after at home until relatively late when she was

Coroner interjects: No, I understand that, I asked about her underlying medical condition. I’ve already heard that evidence. What was your understanding of her underlying medical condition?

JOC: She had a genetic variation of the syntaxin binding protein responsible for transmitting nervous impulses, found in children with epilepsy

C: So, she’s diagnosed with Early Infantile Epileptic Encephalopathy, reconfirmed to be Ohtahara syndrome 11 years later. Thank you. What was your understanding however of her medical condition in the Trust, and your management of her?

JOC: She had epilepsy which I found to be quite adequately controlled.

C: What type of epilepsy did she have?

JOC: Tonic clonic, cluster seizures, myoclonic seizures and absences which were documented.

C: Thank you. How were they flagged up to you, as the medical consultant?

JOC: Well um, all seizures were recorded, we had a daily bulletin of how she was doing sent to our team. We were aware at all times of the frequency of her epilepsy.

The coroner wanted to understand more about the management of Mia’s epilepsy, and persisted with this line of questioning.

C: OK, just to confirm in your statement, Ohtahara Syndrome, has complex epilepsy, different types of epilepsy including tonic clonic, myoclonic and absences and cluster epilepsy?

JOC: Yes

C: What system had you put in place for the recording of Mia’s epileptic seizures? The nature of the seizures, for you to be able to assess the adequacy of medication?

JOC: visual recording of the seizures, at times we had video telemetry, recording her EEG, to make sure…

Dr O’Connell seemed to tail off, sort of finishing a number of his answers in half spoken sentences. There were lots of pauses and the coroner interjected on occasion to try and ensure her questions were answered. [It is hard to tell from my notes whether Dr O’Connell is tailing off, or the coroner is interjecting, so unless I’m certain I’ll indicate with …]

C: On a daily basis what steps did the Trust take with regards to assessing the frequency, the severity, the duration of epileptic seizures? On a daily basis?

JOC: there was visual record by carers

C: Was that not documented?

JOC: Yes, they were documented

C: How frequently did you, or any of your team … as to whether the nature of the epileptic seizures had changes and the management?

JOC: We reviewed on our house rounds every week. We discussed with the neurologist at Great Ormond Street.

C: I will come to that. What I really want to drill down into is the assessment of Mia’s seizures, Mr Walsh perhaps you could take me to those records that show her daily seizures. I want to know, given her overall health plan, what the health plan was regards to seizures, which were such a fundamental part of Mia’s life?

JOC: We have a record of seizures and a plan for management of seizures

C: We’ll talk about the plan, but I wanted to talk about the record. I’m looking for whether there was a specific documented record of all types of seizures, duration and severity of seizures with Mia? Every single day in which she was in the Children’s Trust.

JOC: Yes. I can confidently say yes.

C: Can you take me to them?

Mr Walsh: Madam do you have a bundle here for the witness?

The coroner says that the records can be put up on the screen. Mr Walsh requested a hard copy. The coroner reiterated that they could be put up on the screen.

C: I’m finding it hard to find it…. I want to know what they are, I don’t know if Ms Sheils can assist on that, I can’t find the record, a separate record of seizures.

At this stage Dr O’Connell suggested that he would retrieve them from his briefcase.

C: What I’m really looking at is how were the seizures managed, and were they appropriately managed? …. I can see lots and lots of records kept, what I can’t see is a separate document with all the seizure activity, to be able to look at that on a day to day basis, week to week basis, month to month basis.

Mr Walsh: Madam likewise, I can’t see that in the documentation we have.

C: I’ve tried, I’ve gone through it painfully, and can’t seem to find a separate documentation record, given it’s a fundamental part of Ohtahara Syndrome

Dr O’Connell has been rooting through his bag and has returned to the stand with a blue file and some paper notes.

JOC: This is the documentation, I have it tabulated

C: Mia was with you for just over 3 years, what I want is 3 years of records to be able to assess the frequency, the duration, the severity and the nature of the epileptic seizures. I can’t find any separate documentation to that effect, which then begs me to ask the question, how are you able to assess the seizures if you have no system? And the evidence we’ve heard is there was an increased level of seizures, I can’t see any evidence with regards to that.

JOC: I have documentation here

C: What I want is daily documentation of the nature of seizures, the severity, the duration and what management plan was put in place for them? Do you have that documentation, because nothing has been disclosed to the court that I can see.

Mr Walsh: Madam I doubt Dr O’Connell has that documentation with him

JOC: I have from July 20 ma’am, we’ve got number of seizures and type of seizures here

Mr Walsh: I suspect that is summaries of documentation

C: We may need to break. What plan did you put in place with regards to management of seizures, whether was increase and severity of seizures. What plan, when Mia was first placed in Tadworth Trust, what steps were put in place to flag up seizures?

JOC: She was on different types of anti-convulsants and modified

C: If you can just go through what Mia was on.

JOC: [Medication 1] she had been on [Medication 2] previously. Initially she was under the care of the neurologist she’d been under at Brighton, when she came to us she was looked after by our neurologist from Great Ormond Street.

C: How often was she reviewed by the team at Great Ormond Street?

JOC: Probably six monthly I think, initially by phonecalls, it was covid at that time

C: Covid ended 18 months before her death. Just to confirm you may have a summary of seizures, but you have no daily record of seizures?

JOC: I do have them

C: Have they been disclosed to the court?

Mr Walsh: Madam I can’t see those, given the pathology report received, it hadn’t been flagged up daily documentation was required, I hadn’t realised they weren’t there and was going to be required.

C: Evidence was an increase in severity of seizures, that came in quite late, I’m looking at how responsive Tadworth Trust were in relation to these increase in seizure activity… what I’m looking at is how responsive. Here’s someone with a healthcare plan with regards the management of epilepsy, I’m looking at how responsive Children’s Trust were to that, and whether any missed opportunities to treat that.

The coroner added that the evidence relating to increased seizures had come in quite late from the social worker who was responsible for Mia as a Looked After Child.

Mr Walsh: Yes madam and in Dr O’Connell’s statement he deals with frequency of seizures

C: Yes, but I want documentation of that.

At this point the coroner said that she would rise to enable staff to photocopy the paperwork that Dr O’Connell had in his bag.

She reminds Dr O’Connell that he is under oath and therefore can not speak to Mr Walsh.

We returned to court shortly after midday. There was a discussion of what paperwork had been provided. There were A4 sheets which was a table format relating to absence seizures. Then there was also a spreadsheet without gridlines.

C: Yes I’m grateful, thank you very much Dr O’Connell I’m very grateful we’ve had this report.

Mr Walsh: Madam within the bundle I can see at page c1-2023 there are records of possible seizure, there are several of those interspersed with records but we don’t have…

C interjects: What I’m really looking at is how Mia’s epilepsy was assessed in terms of the care records, but in terms of her management, and I couldn’t find anything from that, but think we have had some access to it now.

Dr O’Connell you gave evidence, we’ll come back to this, you gave evidence Mia was reviewed regularly by Great Ormond Street. I can’t find any medical records, in your statement you said quarterly, in evidence you’ve said 6 monthly. She was seen in medical records, she was seen by someone at St Helier’s Hospital and they referred to Great Ormond Street, but I don’t see any letters from Great Ormond Street neurologist in the bundle

JOC: I don’t have it here, I have a letter from Dr [missed] in 2023, there is one letter, let me see

C: In paragraph 8 of your statement, management of Mia’s epilepsy, after Mia admitted, referral to Dr Aylett… Dr Aylett has service level agreement as a sole trader, outside any NHS agreement, has regularly quarterly clinics at Tadworth… first reviewed July 2021 and Dr Aylett continued to be involved in Mia’s care for her complex epilepsy. What letters do you have indicating Mia’s epilepsy was being managed by Dr Aylett?

JOC: I have a letter from Dr Aylett on 30 November 2022

C: Why is that not in the bundle, it has to be disclosed to us. I’ll rise again… this is simply not good enough.

Mr Walsh: madam, I appreciate that

The coroner left the court but everyone else stayed put. There was discussion between the two counsel.

The coroner returned and checked everyone had copy of the letter

MrW: It is at c1-???

C: My apologies. Can I just ask why given Mia was a Looked After Child, why she needed to be seen outside the NHS?

Long silence

JOC: I presume that’s an administrative thing

C: Is that not a matter for you as one of the individuals that organises it?

JOC: ok, sorry?

C: I’m concerned about the quality of care Mia’s epilepsy got throughout her time at Tadworth. What we have, we now have one letter in the bundle in November 2022. The only ever evidence I can find is the 1 June 2022, that Mia was admitted to Epsom Hospital for increased seizure activity.

I haven’t seen anything relating to Great Ormond Street, that’s the evidence you gave, but Dr Aylett was working in a private capacity wasn’t she? She wasn’t working as part of Great Ormond Street, is that correct?

Mr Walsh: There are letters from Dr Aylett.

The coroner asks Mr Walsh to take her to them. He provides a bundle reference.

Mr Walsh: C1231, letter from July, I accept it’s confusing, it has the Children’s Trust logo in the top left side.

C: No. What I’m concerned about is this is not Great Ormond Street. It’s a person working privately, that is not Great Ormond Street. Just because they work at Great Ormond Street, that doesn’t mean they’re at Great Ormond Street.

Mr Walsh: Indeed, but that’s the neurologist referred to by Dr Sarah Aylett

C: C1231?

Mr Walsh: Yes, top right hand side says this neurology/epilepsy clinic, Dr Sarah Aylett, typed [missed] July

C: Hang on let me just come to it

Mr Walsh: followed by

C: Let me read it please. Dr Sarah Aylett … that is July 2022, other than July 2022 were there any other letters from Dr Aylett?

Mr Walsh: 30 November 2022

C: Certainly doesn’t have the Great Ormond Street logo on it, does it?

Mr Walsh: It does not

C: Thank you very much

Mr Cox: Ma’am if I can assist page 1085 appears to be the referral letter referred to

C: yes, and then response is 25 November

Mr Cox: At c1088

C: let me come that, referral to neurology follow up, dated June 2021 though

Mr Cox: Yes, that was the referral, and I’m just checking if there was any response

C: no. It’s repeated. So other than 25 November, let me just look at [missed]

Mr Cox: c1-1121 is another one dated 23 July 2021

C: That’s very helpful, c1121 is dated 23 July 2021, those are the two?

Mr Cox: Further one c1-192, in same section, 25 March 2022

C: Thank you very much, that’s very helpful. Thank you very much indeed, just to confirm assessment on 23 July 2021 by Dr Aylett, followed 5 March 2022 and then July 2022. Is that it?

Mr Cox: Then I think on 25 November 2022

C: yes, forgive me, I think we’ve got there (lists 4 assessments)

Mr Walsh: ma’am was an EEG Report in July 2021

C: yes, that was by Epsom…. I remain perplexed, given, it’s really about why NHS care wasn’t provided for Mia, in terms of ensuring dissemination of information, ensuring good liaison with the NHS Trust, of which Mia had a number of admissions into. So what’s, I’m really if you could just explain?

JOC: Dr Aylett has a long association with The Children’s Trust, I wasn’t really aware she was working outside, on a different contract to the NHS. Um. That’s all I can say,..

C: you’d agree when someone is dealing with something privately, she wasn’t acting on behalf of Great Ormond Street was she? Mia wasn’t under Great Ormond Street was she?

JOC: Mmmm no

C: I wonder if you could explain to the court, Mia had a number of admissions including June 2022 with increased seizure activity. What information did you provide to the hospital with regards to Mia’s care being provided by Dr Aylett?

JOC: She always goes with a full care package and emergency transfer letter…

C: Were they aware? Were they provided with Dr Aylett’s assessment and management to make their own assessment?

Mr Walsh: Madam I’m aware Dr O’Connell doesn’t have a bundle in front of him, of medical records.

C: I’m aware of that, we can bring it up for him, probably quicker than me getting to it myself actually. C1-120. Forgive me, emergency A&E discharge information, ‘Mia attended due to increase seizure frequency on background of Ohtahara Syndrome, see separate Great Ormond Street Report from EEG. On the ward Mia remained well, no further cluster seizures. Presentation discussed with Great Ormond Street Neurology Team, attended 3 May for review, had EEG in keeping… increasing the [medication] from 120 mg to 1400mg, think that might have been 1200…. No changes made to [medication]…. Advised by Great Ormond Street outpatients will arrange appointment to titrate this’.

So really, I’m quite confused. Was she under Great Ormond Street for this and Dr Aylett was separate? Or are they one and the same team? Are you able to assist?

JOC: I can not. I took over her care in March 2023, as far as I was concerned she was under Dr Aylett for her neurology.

C: Here on 1 June 2022, agreement with regards to her medication by Great Ormond Neurology Team, at variance with Dr Aylett’s asst and management, how can that be right? Unless Dr Aylett was part of the neurology team, or separate to that?

Mr Walsh: Madam there’s a letter thereafter which appears to be the review in question

C: Yes, but it doesn’t say Dr Aylett, it says Great Ormond Street Neurology Team. Dr Aylett was in a personal capacity, private… I was hoping the responsible clinician would be able to assist in answering that question. It appears to me there’s variance in medication changes.

Long silence

C: Can you help Dr O’Connell?

JOC: Sorry?

C: Can you help? Here we have Mia, managed because of increased seizure activity at Epsom St Helier Hospital, admission 1 June 2022, discussion with Great Ormond Street. Was that with Dr Aylett or not Dr Aylett? And what follow up? It says here ‘increase [reads medication instructions] will arrange outpatient appointment next week to continue to titrate this’ was that undertaken in June 2022? I know Dr Aylett saw Mia in July 2022, but what is the connection between Great Ormond Street, I’m just very concerned about the continuity of care.

JOC: As far as I knew we were taking the lead from Dr Aylett, she was Great Ormond Street.

C: She’s not employed by Great Ormond Street for your purposes. So Mia wasn’t under Great Ormond Street when Dr Aylett was caring for her? Is that good medical practice?

JOC: I mean, I think Dr Aylett is a, I think direct care by Dr Aylett was good, I don’t know how it fits into her, I can’t really comment on that.

C: I understand that, here is Mia, who has no voice. She’s a Looked After Child, she’s been seen by the NHS, steps have been taken with regards to that. Then you have someone in the private sector providing a different level of care, I apologise, not different levels of care, different types of management.

JOC: As long as there’s full sharing of information

C: That’s what I asked you, when Mia was admitted to Epsom Hospital, was it known Dr Aylett was looking after her? Was she provided medical records that reflect that? Would it be right to say when Dr Aylett saw Mia, these records were never sent to the NHS? Were they sent to the GP?

JOC: Yes they were. Child would have gone with an updated transfer letter, that mentions she was looked after by Dr Aylett.

C: so from June 2022, was a decision made in discussion with Great Ormond Street Neurology Team to increase the [medication 1] and decrease the [medication 2] and remain the [medication 3]… that was their decision, that was their thought. Could you take the court through what Dr Aylett’s view was of that?

JOC: As I say I didn’t start until March 2023, so I wasn’t physically on the grounds at that time.

C: I’m afraid your name has been given as the witness

JOC: that’s fair enough I’d have to dig around what sharing there was at that time, the team at Epsom would know she was her neurologist.

Mr Walsh interjected to tell the coroner he was acutely aware that Dr O’Connell doesn’t have documentation available and asks her to show it to him.

Dr O’Connell was taken to a record, the coroner talked him through it. It was a note typed on 29 July of a clinic on 27 July.

C: So a month later Dr Aylett indicates to decrease the [medication] is that correct? In July 2021. Then I think was in November 2022 is it correct the [medication] was to be weaned down and stopped?

JOC: yes, that’s correct

C: and that’s stopped in May or June 2023, is that correct?

JOC: Yes, it’s been decreased by 100mg each dose for 2 weeks

C: So given that there was a tailing off of [medication], discontinued in July 2023. Just left 2 anti-epileptic agents … what steps did you take medically with regards to the assessment of Mia’s seizures on stopping the [medication] completely in July 2023?

JOC: first of all was a decrease in number of seizures over that period, if you look at paragraph 11 of my report

C: yes

JOC: none of which needed rescue or were critical, that wasn’t perfect but it was better than before, obviously we always try to slowly increase, get better control

C: with the decreasing dose of [medication]…. In April 2023 were 14 seizures recorded, there’s no evidence of what nature of those seizures were

JOC: in April 2023

C: just says number of seizures but doesn’t say what type of seizures they were

Mr Walsh: madam that would be in the spreadsheet

C: yes, I just realised that

JOC: they’re described there

C: What I don’t quite understand if I go to April 2023, it says please describe the possible events and its 0 but something lasted 30 minutes… there’s a 0 there

Mr Walsh: that’s seconds, its slightly out of line. The columns are please describe possible event under seizure site, next is duration event, 0 minutes 30 seconds for example, there’s another column for seconds

C: I understand thank you very much indeed, that does make sense.  In April 2023 14 seizures, in May 2023 was 9 seizures, 20 seizures in June 2023, 11 seizures in July and in August while the [medication] had stopped, had been increase in number and frequency of seizures during the day.

What steps did you take given the [medication] had been stopped then, and was increase in number of seizures? In 4 times during that month they were twice a day, did that raise any concerns with you in the management of seizures?

JOC: We did an assessment, and we did not change in character and the numbers were down. Didn’t feel she needed alteration of her anti-epileptic drugs at that point

C: did you seek any assistance from Dr Aylett in that decision making, given you’re not a neurological paediatrician?

JOC: I’m sure we did

C: if you did that’s great, can you share with the court?

JOC: I don’t have any documentation here

C: Did you keep your own medical records?

JOC: Yes

C: So how did you document not to change with increase seizures on ceasing of the [medication]…

JOC: August 2022

C: no 2023

JOC: She had 25 in July, 23

C: It says here in July 2023 she had 11 according to the records

Dr O’Connell is reading his documentation and making notes on it. There’s a long pause and silence in the court room.

JOC: I can’t clarify if we took that further or not ma’am

C: it’s not documented in your medical records that you keep then?

JOC: I’d have to look at that

C: you don’t keep medical records of your management of people, I appreciate Tadworth is not a hospital, or GP system

JOC: no, we do have an electronic system that we annotate when we’ve discussed

C: has that been disclosed to the court? Again quite a lot of documentation, Mr Walsh?

Mr Walsh: there’s about 4 thousand pages, I’ve not seen an annotation, would suggest a hand written note, I can check*

C: over lunch, thank you very much indeed. Just coming to your statement, paragraph 12 of your statement… absences during nighttime in May 2022… none during night time or early hours of morning during 2023. Did that raise any concerns with you that Mia was not being appropriately monitored?

JOC: No, not at all. I’m sure she was monitored as well during night and day. Her number of absences was, absences are quite subtle. And urgh, umm, they’re not associated, not necessarily associated with movement disorder

C: thank you. You’ve written in paragraph 15 of your statement, I considered level of observations alongside …. Most appropriate… risk presented by Mia’s condition. Would be grateful if you could explain that, and whether the neurologist Dr Aylett thought that was appropriate or not?

JOC: Yes, she did. Mia was at home from home, she wasn’t in an intensive care unit. To pick up all seizures she’d have to be in a [couldn’t hear]…. She spent a lot of time out of the unit, at school, on trips and things, wouldn’t have been wired up for those things. Seizures she had not needing rescue or associated with critical events… I do have large confidence in the way she was looked after on the unit quite frankly, the carers and nurses knew her very well and she was a big personality, I don’t think they would have just not looked after her properly, I think the standard of care is very high.

C: thank you very much indeed, I don’t have any further questions to ask you, but I’m going to ask the family.

Paige, Mia’s sister, is acting as family spokesperson as they have no legal representation. She had a question for Dr O’Connell based on something he had said in his statement.

Paige: We did have one question, the post-mortem you’ve read it and have your own opinion. Due to the sleeping position Mia was found in, how can you rule out Mia didn’t have a seizure and suffocated due to the position she was found in?

C: Dr O’Connell was a witness of fact, you’re asking opinion. He’s not an expert in that way. I’ll take a view of that.

Mr Cox for Bracknell Forest: Paragraph 15 you’ve said consider level of observations every 15 minutes, alongside audio visual monitoring were appropriate. Am I to expect you’d expect 15 minutes actual, visually monitoring Mia, every 15 minutes? Alongside that an audiovisual monitor staff could glance at?

JOC: I think instruction was she should be visited and checked every 15 minutes, the audiovisual had little to do with it in all truth

Mr Cox: So your expectation was she ought to have been checked every 15 minutes?

JOC: Yes

Mr Cox: Would you have been involved in issuing that instruction as part of the drawing up of the care plan?

JOC: The care plan was drawn up before my time, she was risk assessed, not by myself

C: Sorry when you took over the care of Mia, did you undertake your own risk assessment and assess the plans in place to see whether they were appropriate?

JOC: Yes, we did, we sat down and discussed the care plan.

C: on the basis of that, could you answer Mr Cox’s question?

JOC: The question was?

Mr Cox: You said Mia should be checked every 15 minutes, were you involved in that instruction?

JOC: Having reviewed it, yes

Mr Cox: Did you give that instruction to any of the carers involved in Mia’s care yourself?

JOC: They had written instructions, I didn’t verbally

Mr Cox: so from your perspective as overall clinician responsible for her, how were you able to satisfy yourself she was being checked every 15 minutes during the night?

JOC: We would review her daily charts that record her sleep position, fluid balance and things like that, they always seemed to be very completely filled with hourly observations

Mr Walsh: madam the sleep cycles are referred to in the records, can give page references?

C: I think what Mr Cox is getting at, don’t think got answers to. What is meant by 15 minute observations, then answer that question?

JOC: checks, making sure she’s breathing, they wouldn’t be I think basically it’s to ensure the child is breathing and well, and her position is comfortable.

C: is that being at the bedside or elsewhere?

JOC: At the bedside

C: So your understanding would be as part of care plan, every 15 minutes Mia will be seen and assessed, in her presence, next to her?

JOC: Yes

Mr Cox: it then follows on, aside from looking at the records, how do you carry out any checks or audits of the night time care regime? To make sure that type of examination is being carried out?

Mr Walsh: madam I think auditing is not necessarily a matter for clinicians

C: I think it is, if someone is a responsible clinician they need to satisfy themselves. It’s about reassuring self, I think it’s a perfectly fair question Mr Cox. You’re talking about checking up on the staff are doing what they say they are doing?

Mr Cox: yes

JOC: ummm, ummm, I guess if you want to do that you could nanny-cam, or you’d have to

C: I think the question was what steps did you take to reassure yourself the plan was being followed?

JOC: I looked at the daily charts she had, for example, the day before she passed away she’d been seen, 30 times, you know, it’s a bit difficult to assume that these are, if you don’t believe what your staff are saying, you’d have to accept, to covertly observe the staff … these are trained carers and highly specialised nurses so I think I find that difficult to believe they would just be filling in the chart at the end of their shift. That’s just not how The Children’s Trust works really, there’s a really big strength of feeling between staff and the children they look after.

Mr Cox: Would you ever sit with staff and ask them to explain what form the checks they were carrying out took?

JOC: No, I wouldn’t have done that, that’s true

Mr Cox: you’ve just described a methodology by which you’d expect checks to be carried out?

JOC: Yes

Mr Cox: How is that passed onto the care staff to ensure they’re doing what you expect them to do?

JOC: Their line managers really

Mr Cox: So do you tell the line mangers this is what I’d expect and you expect them to pass that down?

JOC: Yes I’m not the line managers

Mr Cox then referenced NICE Guidelines and a document from the American Academy that Dr O’Connell had mentioned in his statement.

Mr Cox: Recommended discussion take place with family on increased nighttime supervision such as night time monitors. Were you aware according to the care plan at least, the family were not contacted about the manner in which the nighttime care was to be carried out?

JOC: Since she was admitted the risk was assessed and that was when it was decided. I think, I don’t know whether the subject of Sudden Unexpected Death was rediscussed with the parents and family. And yup

Mr Cox: Just wanted to clarify one part of your statement as well if I may, you said at paragraph 17, you say that you’ve reviewed the post-mortem and toxicology report and what you say there is based on the reports, there is no evidence of an acute pathology or evidence of hypoxia.

C: I’m very concerned about that, as it’s an opinion from someone who is not a pathologist.

Mr Cox: Was going to compare the two documents  [reads from Dr O’Connell’s statement] at A18 which is the pathology report and neuropathology report from Professor Cohen, the coroner has looked at, the phraseology there is slightly different. Says not found any acute pathology or evidence of a significant period of hypoxia, you just don’t include the word significant in your statement. Is there any reason why?

JOC: I mean there wasn’t, a significant period, no not really, if there had been hypoxia due to respiratory asphyxiation there would have been evidence of you know, changes

C: I’m very conscious actually you’re not a pathologist, you’re not able to opine on these matters.

Mr Cox: there is a difference

C: there is, and I understand that

There were no further questions from Mr Cox for Bracknell Forest.

Mr Walsh started by telling the coroner that he was mindful what he was going to ask was part of what had just been put to Dr O’Connell. The coroner said she understood and was grateful to him for testing the evidence, before interjecting as he asked his first question and reminding him that Dr O’Connell is a witness of fact, not opinion and he was not to ask that.

Mr Walsh then took Dr O’Connell through his statement and the number of seizures that Mia was recorded as having. They discussed an EEG that was taken and Mr Walsh said Mia had no seizures during that recording.

JOC: the point of the EEG was to see if she was having seizures we can’t see… sometimes children can be having seizures all the time without muscular movement, that was to check when she wasn’t having a seizure she wasn’t having one.

Mr Walsh: alright. You mention generalised

C: I’m really concerned, you’re asking Dr O’Connell to opine on matters outside his expertise

Mr Walsh: Very well, I’ll not go further with that. You were asked about the daily check sheet and you referred to sleep cycle. Can I ask c1-2756 to be put on screen please

Mr Walsh proceeded to talk through the recording on the sleep cycle and positioning sheet, and asked Dr O’Connell to confirm their contents, that they were completed by healthcare assistants.

Mr Walsh asked Dr O’Connell what the role of clinical site managers was:

JOC: Senior nurses with experience, to whom first line of call. There are no medical staff on at night, so is a clinical presence for someone to make difficult decisions on.

Mr Walsh asked a number of questions about the recording sheets.

Mr Walsh: there’s also positioning, what’s the purpose of the positioning?

JOC: To see whether she’s lying on her back, front, face down, whether she’s got a pillow

Mr Walsh: Thank you, in terms of frequency of monitoring, is that a matter that’s dealt with in care plans?

JOC: Explained in a care plan, yes I believe it is

Mr Walsh: are the care plans shared with the family?

JOC: Not by me, but I’m sure

Mr Walsh: you’ve described how you expect checks to be undertaken, are there written policies at Children’s Trust that deal with that?

JOC: Yes, I believe there are

Mr Walsh asked a number of questions about Mia being checked every 15 minutes, and whether Dr O’Connell was satisfied with that arrangement. He was. He told the court that Mia’s seizure activity was well recorded in the day time, never needed rescue, was not associated with critical events and Mia was very mobile “could move around and protect her airway and do that sort of thing. I thought it was appropriate really”.

Mr Walsh: Thank you. Now you’ve kindly assisted us with a spreadsheet of observations as it were, which has the details of possible events in terms of seizures, an attempt to describe the type of seizure, the duration of seizure and so on and so forth. As far as these records are concerned, I see the spreadsheet starts January 2023, is that something that’s recorded electronically?

JOC: I’m not sure, I just asked my PA to go back to the year 2023. That was my own request.

Mr Walsh: In terms of ability to review seizures, are those the records you go to, to review those?

JOC: Yes they are

Mr Walsh: Lastly as far as medication is concerned, you set out in your statement, you consider it wasn’t possible to prevent all seizures. Is there anything more from your point of view that could have been done with regards to medication?

C interjects: I appreciate that, given the stopped [medication] in July, I appreciate it’s variable, whether that should have triggered another neurology appointment, and the answer was not in the circumstances.

Mr Walsh: No further questions

C: I’ve one question to ask you, has anything changed in your practice since Mia’s death?

JOC: It has a lot, Mia was a total shock, Mia was active

C: What changes in your practice?

JOC: To remember and discuss sudden unexpected death with the families and with my team, and that also reflection on you know, urgh, what is the best way of avoiding, is there a way of avoiding this, what is the play off between having a life and being closely monitored really

C: Are you aware of any pieces of equipment such as under mattress assessment for epileptic seizures?

JOC: Yes

C: Given the severity of Mia’s seizures, she’d always had nighttime seizures up until 2023 and then she had no longer, was there any consideration whether further assessment could be made at the Trust?

JOC: I think visual catching of the seizures was the best part

C: It is correct to say under mattresses can assess individual’s seizure activity?

JOC: Well, they detect movement, but don’t tell you whether it was seizure movement

C: So why was that not considered with Mia?

JOC: because she was being watched

C: Given the unpredictability of the seizures, would it not be right to say 15 minute observations, we’ll hear about those observations, is simply going to miss seizures, rather than using a pressure mattress?

JOC: A pressure mattress is out of the question because it doesn’t tell you what you need to know

C: I understand that, but does it not assist?

JOC: I think the experts agree it is not

C: Was it considered? I don’t see any documentation it was considered?

JOC: No, it wasn’t considered, I’m not sure what

The coroner asked Dr O’Connell what other equipment might have been considered or utilised.

JOC: Movement watches and monitoring and you can get video movement which I use for newborn babies, lots of apps you can use, these have been discussed for use in epilepsy

C: Any consideration for those being implemented?

JOC: We researched NICE Guidelines and they won’t make any recommendation on that

C: Are you bound by NICE Guidelines as an independent organisation?

JOC: We have to at least abide by them, be within them.

[This is the disclaimer from the NICE Guideline, for completeness:

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and, where appropriate, their carer or guardian.

Local commissioners and providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties].

At this point Paige, Mia’s sister and family spokesperson raised with the coroner that when Mia moved to The Children’s Trust she had a seizure mattress.

Paige: Sorry to the best of our knowledge the Trust gave Mia an alarm bed … she came with an alarm bed to the Trust, which they took away. Because of her movement, it was taken away.

C: Was that something you’re aware of?

JOC: When she came in 2020? What did she have a pad?

Paige: I don’t know the correct term

C: Seizure mattress is fine

Mr Walsh: I think it’s suggested there may have been seizure mattress, or some equipment Mia arrived with initially. Are you aware of that, or whether it was considered thereafter?

JOC: I’m not aware of that. I hope it was discussed with the family they’d substitute vigilance with that.

C: What I think might be useful as way forward, I’m aware Dr O’Connell has been on the stand for some time. Given she came from Larchwood, perhaps you could enquire over lunch?

Mr Cox says that they will do that*.

Mr Walsh: two matters. With regard any additional equipment, you’ve said NICE haven’t recommended certain equipment, the Coroner put to you they’re not banned by NICE, you said you try to abide by it. You said video monitoring use with newborns, do you consider there ought to have been something different for Mia in the circumstances?

JOC: Ought to, it’s not recommended, you’re in boundaries if you don’t. As an exploratory thing, in a non-scientific way, to have a movement profile would be a good idea.

Mr Walsh: non-scientific, but you can potentially try those things. In terms of trying more equipment for Mia, you’ve talked about seizure mattresses and what they do and don’t pick up, were they considered?

JOC: Not really with Mia, she was observed, hardly a better way of observing seizures than looking at them. If she was left in a room alone might be useful.

Mr Walsh: In terms of absence seizures, is anything useful for that?

JOC: Not really, fluttering of eyes

Mr Walsh: Lastly you mentioned SUDEP and whether anything changed in your practice and you reflected on discussing SUDEP with families and staff. Can you explain to the court what SUDEP is, or what you say it is and why you reflect on wanting to discuss more?

JOC: We understand epilepsy is very much increased risk of death in children and young people with epilepsy, 1 in 1000, that’s extremely high.

Mr Walsh: Can you explain what SUDEP is?

JOC: Unexpected death in epilepsy

Mr Walsh: In terms of discussing that with families?

JOC: If talk to family about it, you can say in epilepsy its kind of expected, so its unexplained and I think this needs to be discussed and kept on being discussed really, without causing a lot of fear in the family. it’s a trade off between parents worrying about their children when they go to university, going to be found in bed… certain risk factors can add to determine just how much at risk you are….

Mr Walsh: I see. Madam, thank you.

The coroner thanked Dr O’Connell and he was released at 13:30. He returned to court after the lunch break and added comments from the back of the court (where he was sat) on a number of occasions later in the afternoon, when other evidence was being discussed, in an attempt to assist the court.

*There were two matters that counsel were due to clarify over the lunch break (noted with an asterix above) but neither of these were returned to in open court. These were Mia’s pressure mattress and Dr O’Connells annotations on the electronic record system.