Mia’s Inquest Conclusion

The Assistant Coroner for Surrey, Dr Karen Henderson, came into court shortly after half past nine, and the hearing to sum up the evidence and conclude the inquest into the death of Mia Louise Gauci Lamport lasted an hour.

The coroner introduced herself for the benefit of the recording, gave the date and venue and said she was with one of her coroner’s officers Margaret.

She told the court that she understood two members of staff from CQC were online. They confirmed that they were and introduced themselves. Later on in the hearing the coroner confirmed that CQC were an Interested Party to Mia’s inquest, although they had not participated before this final day. In attendance was Sarah Smith, an Inspector in the Children’s Team and Sarah Wilson, from CQC’s Legal Prosecutions and Inquests Team.

Mr Cox, the legal counsel for Bracknell Forest Council, advised the coroner that he’d received a request from the family to know who was in court, requesting the coroner do a round of introductions.

The coroner said that she would but had another matter to deal with first. She told the court that “late last night” she had received a statement from Dr [missed which doctor it was].

Dr Henderson asked Mr Walsh, counsel for The Children’s Trust, Tadworth, whether he had shared the submission with all Interested Persons. He said he had not, instead sending it to the court for them to distribute.

He said that it had been uploaded to Caselines and he believed his learned friend had got it. Mr Cox confirmed that he had seen it.

The coroner said that she was very grateful for the supplementary statement, but if parties had not had time to read it, it was important that they did.

At this point Paige, Mia’s sister, told the court that the family had not been given it.

Coroner: I am grateful for the additional submission. I think it would have been more helpful if you’d indicated that was what you were proposing to do… presenting a letter like that, a statement, in the evening.

Mr Walsh: Indeed, it was later than we’d wanted to disclose or provide…  but we wanted to do so before today. What can I say?

C: If the family haven’t seen it I can’t sum up and come to a conclusion until it’s been viewed. I take it more as a PFD issue, so it doesn’t need to be read into court, but all IPs need a copy of it.

Not for the first time in Mia’s short inquest, court was adjourned to enable the photocopying of late disclosure to share with parties in court.

After almost 15 minutes, parties returned to court. The coroner asked Mr Cox if he had any submissions to make.

C: Thank you very much, any submissions you wish to make?

Mr Cox: Ma’am no, I don’t think I can take it further. There’s obviously a few concerns arisen from that statement, but [I couldn’t hear what he said next, either they were related to PFD matters, or were not related to PFD matters]

There were no submissions from Paige’s family and nothing from Mr Walsh. CQC were asked if they had any submissions to which they responded that they remain neutral to this.

The coroner then went around the court asking those present to introduce themselves. Mia’s mum Jennifer, sister Paige and dad Chris were in court, with a number of other family members.

Lou Richer from Bracknell Forest Council who gave evidence last week was also present, together with Catherine Lloyd, Mia’s allocated social worker.

The Legal Services Lead from The Children’s Trust was in court, together with Sian Morgan from RPC Solicitors and another person from The Children’s Trust whose name I couldn’t hear.

Natalie Price, Specialist Nurse for Child Death Reviews at Surrey Heartlands ICB was also there supporting Mia’s family.

The coroner thanked everyone for introducing themselves and said that it left her to sum up and come to a conclusion. She explained that the purpose of summing up was not “to deal with every twist and turn of the inquest” but to answer 4 questions, with regard to the Coroners and Justice Act 2009.

The coroner said that she needed to come to a conclusion by making findings of fact, on the balance of probability, explaining that meant something was more likely than less likely to have happened.

C: We know who died, Mia Louise Gauci Lamport. It’s very clear from the PIR hearings, and indeed the hearing itself, that Mia was a very much loved, beloved child, who was special. Not only to her parents, her sister, to her wider family and friends but also to those who knew Mia, whether from the social workers or indeed those that looked after her at the Tadworth Children’s Trust. As her sister said she was loving and affectionate, with the cheekiest of smiles and eyes that lit up a room.

The coroner recapped more on what we had heard about Mia, before adding:

C: I have no doubt her loss has had a great impact on her family and all that knew her, and I would very much like to offer my condolences to you again. In a way condolences seem almost inadequate, but I have been very taken by Mia, her life and the love, support and affection that she had throughout.

The coroner told the court that Mia was born in November 2006 and at birth she appeared to be fit and healthy. When she was about 17 months old Mia had her first seizure and was diagnosed with Early Infantile Epileptic Encephalopathy. Eleven years later, Mia was diagnosed with Ohtahara Syndrome due to a known mutation in the STXBP1 gene.

The coroner said the “devastating consequences of this gene mutation” were highly likely to be associated with Mia’s epilepsy and associated global developmental delay.

C: It is an enormous credit to Mia’s family that they looked after Mia at home. As time went on, with the support from social services, including an Education Health and Care Plan.

The coroner said that as Mia entered her teenage years “her level of need was increasing” alongside her ongoing developmental delay. She said that this led to Mia having a Child Protection Plan, and thereafter a full care order to provide her with the care and support she required. The coroner said during the Covid Pandemic Mia initially went to stay at Larchwood, with the consent of her parents, with a view to ultimately a long term placement being found for her.

C: Tadworth Children’s Trust was recognised to be the most suitable placement for Mia. In July 2022 Mia moved there, first to Camelia House, then in November 2022 to Jasmine House, where she was resident at the time of her death.

I’ve heard the evidence provided by social services. I’m satisfied the care they provided to Mia and her family was exemplary.

With Mia increasingly becoming dependent, given all her needs… through health, education, physical, emotional…. it was in Mia’s best interests that she required full time residential care…. No prospect of any other situation given her needs, and her increasing and ongoing needs.

I am satisfied the ongoing care of Mia by the Bracknell Forest Social Services Team extended into Tadworth Children’s Trust, with regular six weekly visits by her social workers, and a couple of days spent to see what life was like for Mia in Tadworth Children’s Trust.

I am satisfied that they cared for Mia as well as they possibly could.

There were some concerns, raised by the social worker about Mia being appropriately stimulated, whether she was in her brace for too long, the use of the Neater Eater… in that regard I accept they were recognised and addressed by the Trust and they did not contribute in any way to Mia’s death.

I accept, it’s a reflection of the social worker, in Ms Richer’s evidence that Mia was receiving a good standard of care and the Trust had a good understanding of Mia’s needs and staff were treating Mia with dignity and respect and she appeared to be thriving in the face of her many challenges with Ohtahara Syndrome.

On 10 September 2023 Mia was fine, as she had been for the weeks proceeding. She’d had a good day, and evening, and nothing appeared to be untoward.

Her Paediatric Early Warning Score on the evening of 10 September 2023 was within normal limits.

I accept there was nothing untoward to indicate what was going to happen in the early hours of the morning of 11 September.

The coroner said that Mia was put to bed around 20:30 hours. She said given the severity of her epilepsy Mia was on visual observations every 15 minutes “as part of her care plan, to ensure she was safe, not at risk of asphyxiation, not at risk of having a fit and most important of all, that Mia was breathing”.

The coroner said between 02:15 and 03:00 hours Mia was changed and settled. She said at 06:10 hours, Nurse Cairns, in her evidence that was read into the court record, told the court she had attended Mia, which confirmed Mia was alive at that point.

She said Ms Yapichi gave evidence about the times at which she was responsible for conducting visual checks on Mia, including when she was responsible from 04:45 onwards.

C: She signed in the record kept she had undertaken visual observations of Mia at 06:00 and 06:15 hours.

Looking at that period of time more closely, evidence is Ms Yapichi left Mia’s room to locate Nurse Cairns, returning to the room with Nurse Dickerson to help with Mia, to give medication.

Whilst I accept timings are always unclear in these situations, I accept the findings of Blue Box, that it was on or around 06:32 on 11 September 2023 that Emma Dickerson and Ms Yapichi found Mia blue and unresponsive.

Resuscitation was commenced, emergency service were contacted at 06:39 according to the electronic clinical record from the ambulance service.

The coroner said that the Ambulance Service attended promptly and were with Mia by 06:49. They continued with resuscitation, without success.

C: Mia was recognised to have died at 07:21 hours on 11 September 2023 at Tadworth Children’s Trust in Tadworth. And that Mia was 16 years of age at the time of her death.

The coroner said that the Police attended, as is normal in such circumstances. On their view they did not indicate or find any suspicious circumstances with regards to Mia’s death, or any third party involvement.

The coroner said that she accepted that to be the case.

She said given Mia’s death was unexpected a post mortem was undertaken by Dr Simi George, with a neuropathology assessment by Professor Nicki Cohen.

C: Professor Cohen did not find any evidence of acute pathology or a significant period of asphyxia prior to Mia’s death.

The coroner said the report said Mia’s death was a relatively sudden death, with epilepsy. She said absent Dr George finding any other casual or contributory factor to Mia’s death, the provisional cause of death given was 1a STXBP1 related encephalopathy with epilepsy.

She said it was “Up to the court to come to a final cause of death”. She then recapped what was known, and what was not known, with regards to Mia’s death.

C: I accept the evidence of Dr O’Connell, from academic research that Mia’s condition was chronic, frequent, hard to control epileptic seizures as a consequence of a genetic defect, shared with a number of other syndromes such as Ohtahara or Dravet … can cause sudden death directly related to epilepsy, but not directly causative of epileptic seizures.

Simply having the condition sadly leads to increase risk of sudden and unexpected death, the exact mechanism of which is unclear…. Considered to be a SUDEP, often happens at night…

The evidence of Ms Yapichi, and I am satisfied, that it is more credible in interview with Blue Box Associates, rather than the evidence heard in court. In large part as more contemporaneous to Mia’s death.

I am satisfied it was common practice for a number of nursing staff and carers to use the audio visual camera to undertake the 15 minute checks.

Whilst it might be helpful to see Mia, and other residents, move I do not accept it is possible to ascertain whether Mia was still breathing.

Indeed, in interview with Blue Box Associates, a member of staff acknowledged as much, with the use of the camera.

As such I find Ms Yapichi’s assessment of Mia to be sup-optimal.

I accept the evidence of Blue Box Associates, that she did not adequately reassure herself Mia was breathing at 06:15 hours.

It remains unclear, I can therefore make no finding of fact as to whether that had happened previously.

The coroner went on to highlight her concerns that this was greater than simply a failure on behalf of one Child Support Assistant.

C: I also accept there was a lack of understanding more generally with staff at the Trust as to what amounts to a visual check at night.

The regime, the plan, was insufficiently robust, and unclear.

What was expected of those caring for Mia was insufficient for them to be able to fulfil what was required of them.

That led to Mia, was not at all times monitored by the staff at night, in accordance with her care plan.

Whilst this wasn’t explored in full, given there was a lack of robust assessment as to what was expected of carers and staff with regards to assessment.

Also, some consideration as to whether was suitable to undertake a check through a plastic window which was in her cot, and whether that indeed was sufficiently robust enough to ensure someone like Mia is breathing during the night.

Mia slept in a way that had the potential for her face and her airway to become obstructed.

When found, at or around 06:32, her anti-suffocation pillow was in her cot or bed but was at the other end to where her head was.

I note Blue Box Associates found there was not an assessment of whether sleeping in this position posed a risk, and how it should be managed.

Also leaves me in no doubt, given the finding of the pillow at the opposite place to where it should be, as to the quality of the assessment made for Mia at 06:00 and 06:15, if not before, in circumstances where as part of her care plan, Mia was to be turned and assessed every 2 to 3 hours….

I accept that Mia during the night of the 10th to the 11th September was not adequately cared for as part of her care plan.

And that indeed, that was probably the same on many occasions in the past, but I can make no finding of fact on that.

The coroner explained that the question for her court was whether the lack of proper visual checks played a material part in Mia’s death.

C: The question for this court is whether this lack of proper visual checks played a material, that is more than minimal, negligible or trivial, contribution to her death.

Taking all evidence into consideration, I accept there may be some possibility of that being the case. I am however satisfied that whilst there was a lack of robust visual inspection, that it does not meet the threshold on the balance of probabilities that it did play a material contribution to Mia’s death.

On the grounds of the evidence of the pathologist… that no evidence of an acute hypoxic event, notwithstanding the variance in timings between the paramedic report and that of the staff at the Trust, I accept Mia was known to be alive at 06:10 hours and thereafter not at 06:32 hours.

A relatively short period of time, so I’m satisfied she’s likely to have died at some point between those times. I can’t take it any further than that, hence indicated time resuscitation stopped as to her cause of death.

The coroner then offered some further explanation, albeit with caveats, about Mia’s temperature when attended by the paramedics.

C: While temperature is not a reliable source of ascertaining when someone has died, I note Mia’s temperature…. (report of the ambulance staff) indicated Mia’s body temperature was greater than 35 degrees centigrade on their arrival…. Indicating, I put it only in a very soft way, she had not died some considerable time before their attendance.

… that Mia had a life limiting condition. She was for full resuscitation.

Her quality of life, limited by her underlying condition, was good.

But that still, on the evidence I heard in court, her life expectancy was greatly reduced from those who did not have a condition. Really is a testament to the care provided by the family, the social workers, and Tadworth themselves that she lived as long as she did.

Mia was well before 11 September with no underlying treatable illness, and normal PEWS score on the evening of 10 September.

Accept evidence whilst Mia’s epilepsy could be managed medically, by medication, it could not be controlled. She had ongoing seizures, but the nature of the seizures were such she did not need rescue medication for them to stop. Mia could have silent seizures, but also could be very vocal and move if more tonic clonic, myoclonic or [missed] seizure, which I do accept would have bene picked up on camera.

No evidence care provided on 10 September, into 11 September that that was the case, making it less likely that Mia’s death was seizure related.

I appreciate that there are no absolutes. It is on the balance of probabilities.

It’s important to weigh up these competing issues, on one hand Mia’s underlying health, against the omissions in care with poor visual checks.

But I am satisfied the collateral evidence the court has heard as such, whilst mode of death is unclear, the cause of Mia’s death is more likely than not to be related to her underlying condition.

Put simply, but for the Ohtahara Syndrome, Mia would not have died when she did and she died during the early hours of the morning on 11 September 2023.

The coroner explained other options she had considered, namely whether Mia’s death could be considered to be unascertained.

C: I have considered whether Mia’s death could be considered unascertained, given Sudden Unexpected Death by Epilepsy by default is a diagnosis of exclusion, nothing else in the form of trauma was found to cause or more than minimally contribute to Mia’s death.

It is very finely balanced, but we do know Mia had an underlying condition. That this was going to be self-limiting. That that condition in itself can result in sudden unexpected death and it may not be seizure related.

I am satisfied the balance therefore lies that this is more likely to be related to the underlying epilepsy, and I cannot say that whilst it may be possible that the omissions in care contributed more than minimally to Mia’s death, it simply doesn’t reach the threshold on the balance of probabilities.

I will therefore accept the pathologist’s cause of death. STXBP1 related encephalopathy with epilepsy.

The coroner said that Box 3 would be recorded as follows:

Mia Louise Gauci Lamport had Ohtahara Syndrome, as a consequence of a STXBP1 gene mutation, resulting in treatment resistant refractory epilepsy and global developmental delay, requiring residential care, and assistance with all activities of daily living at Tadworth Children’s Trust in Tadworth.

Mia was known to be alive at 06:10 hours on 11 September [missed] before being found at around 06:32 hours the same day.

Resuscitation was unsuccessful, Mia was recognised to have died there at 07:21 hours on 11 September from complications arising from her underlying STXBP1 related encephalopathy with epilepsy.

In Box 4, I will return a conclusion of Natural Causes.

Assistant Coroner Dr Karen Henderson said that she then wished to deal with Prevention of Future Deaths matters.

C: It is credit to Tadworth Children’s Trust that they appointed an external investigator, Blue Box Associates, and I accept their recommendations in full.

But I also recognise it is disappointing that the governance systems in place were insufficiently robust that it was necessary to do so.

Particularly, from this court they have had previous Prevention of Future Death reports relating to the issue Mia suffered, of poor visual observations.

That there appears, from the previous PFD report, two years previously, that there is an ongoing issue with the management of visual checks at night.

And lessons do not appear to have been learnt.

I’ve heard evidence it is now going to be. Further documentation was provided, with updated frequency of monitoring guidelines.

I do not find them sufficiently personal, or sufficiently robust, that they can be relied upon.

Every child, particularly someone like Mia, has to have a personalised visual inspection, need to be robust, needs to be clear, cannot be allowed to be varied by various members of staff.

Perhaps the Regulatory Bodies should take note of this.

I requested a further statement from Dr Aylett. I still want that statement.

I want to know what her terms of employment were, her role, if there was a service level agreement….what seems to be is an ad-hoc system that is closed. And I expect it within 4 weeks.

It is outside the norm, and it is disappointing, again the Regulatory Bodies did not perhaps fully appreciate what medical care was being provided by Tadworth Children’s Trust, and that link with NHS Services.

It is I find sufficiently outside the norm that it requires a Prevention of Future Death Report, to all the overall regulatory bodies, such as CQC and NHS England, for them to make an assessment as to whether the medical supervisory care provided is of a satisfactory standard.

it is not a matter for this court, but it needs to be flagged up and highlighted.

Particularly in view of the statement received recently, that due to financial issues… was no tertiary referral for 6 month period between April and November 2023.

The NHS is free at the point of use, I do not accept someone such as Mia, a child in a dependent position who does not have capacity, who does not have any external supervision as to the care they are provided.

It’s up to NHS England to consider whether that is appropriate or not.

It would be my view, that rather than an ad-hoc arrangement where someone as a Consultant Neurologist is appointed privately to give an assessment of someone’s medication, indeed there should be regular medical review independent of Tadworth.

As there is with the social work provision, that this is independent. I don’t see the independence with regards to medical care.

I fully accept a number of individuals provide that care but I don’t understand…. It needs to be opened up to scrutiny and I will be writing a Prevention of Future Deaths Report with regards to that.

I don’t think any provision of medical care should be in isolation.

Evidence was you could have ability to go to Epsom Hospital… why aren’t those things there at the moment?

I appreciate the difficulties of getting patients, carers to outpatients appointments, so I think it’s important there is a balance. If NHS England felt the approach currently is proportionate, that is a matter for them, but they need to be informed about it.

It is also important to note Tadworth is a charity, it is not part of the NHS.

Needs consideration for Regulatory Authorities, whether they satisfy what is required of NHS facilities.

There needs to be greater oversight. I’m dealing really with medical care.

The care Mia was provided on a day to day basis was good care, it’s about that bigger picture, so I’ll be writing a PFD on two matters, with regards to visual inspections and indeed with regards to this overall medical care provision.

The coroner’s final remarks were about her disappointment that The Children’s Trust had not responded to the Prevention of Future Deaths Report that she had issued them in May 2022. (This report was issued following Connor Wellsted’s death, you can read my report about what happened to Connor at The Children’s Trust here).

C: It is extremely disappointing that my previous Prevention of Future Death Report was not heeded in the way it should be. That the Action Plan is full of this is going to be implemented, that is going to be implemented, when nothing substantial has been.

This concludes the inquest touching on the death of Mia, [addressing Mia’s family] thank you very much indeed for your forbearances and your stoicism.

Mr Walsh, Mr Cox, thank you for your assistance, and to all those involved in Mia’s care.

She was clearly beloved and much loved, albeit in my sadness, it’s been a pleasure to know her, sadly in her death.

Thank you very much indeed, thank you.

Court was adjourned at 10:31. I will share a family statement when I receive it. I’ve approached The Children’s Trust for comment.

With thanks to my crowdfunders who financially support by reporting from court, and to those reading, reflecting and sharing my coverage.

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