Written evidence from Thong Nguyen

1. I wish to share my harrowing experience with the Coroners Service. The experience shook my life-long belief in the Westminster system and has contributed to a protracted period of injustice, trauma and suffering for my family. My son, Hayden Nguyen, died at Chelsea and Westminster Hospital on August 25th 2016, only 6 days old. My wife and I were left for long periods alone as we watched our son gasp for breath and slowly die of untreated shock and respiratory failure over a period of 12 hours, ultimately witnessing his death.

2. Hayden’s death was referred to Senior Coroner Dr Fiona Wilcox at Westminster Coroner’s Court. After much struggle, an inquest into his death was opened and held across 3 days in November 2017 by Assistant Coroner Dr Shirley Radcliffe. We were supported by a single clinical negligence solicitor on a CFA whilst the “other side” were supported by an NHS Resolution solicitor, the Trust head of legal, various paralegals and the Consultant’s barrister from the MDU (Medical Defence Union).

3. The inquest into my son’s death was extraordinarily adversarial, lacking humanity and compassion (including, bizarrely, animosity from the Coroner), insufficient in terms of investigation, and extrinsic to the content of the inquest itself, the service delivery was disorganised and unprofessional. My experience with the Coronial Service was the second worst experience of my life.

3.1.         “The inquest process is of profound importance to many families. It can have a huge impact on the grieving process. A properly conducted inquest which exposes the truth, culminates in a finding about what went right and what went wrong, and makes recommendations for change if that is necessary, can help relatives to recover after a death. Conversely, a poorly conducted inquest can have quite the opposite effect and may cause serious and permanent damage.” - Leslie Thomas QC[1]

4. Hayden’s inquest failed to expose the truth of how he died - but the Coroner went further; she personally discredited and sought to delete criticisms of care and learnings that had already been made by the Hospital (the Trust) itself. The Coroner acted with astonishing cruelty; smirking as she used the power of her court to take away the Trust’s own acknowledgement of their failures and promise of learnings, as well as facilitating a specious apology to the clinicians who had failed Hayden.

5. Further to the hurtful and seemingly personal hostility she displayed towards me and my wife, we remain shocked and distressed at her inability (or unwillingness) to adequately interpret evidence and give appropriate weighting to independent witnesses. It was almost a year after Hayden’s inquest that we discovered that it was the Coroner herself, despite feigning surprise at the direction the inquest went, who in the months leading up to the inquest had nudged the Trust towards a narrative, which they resisted, but regardless played out at inquest and impacted justice from that point forward.

6. Having been failed in life, the inquest failed Hayden in death. It is difficult to understate the impact that the inquest has had on my wellbeing. I have thought about Hayden’s inquest every day, multiple times a day for the last 3 years; agonising over the injustice and repeatedly playing out in my mind wrongful and hurtful comments made by the Coroner and witnesses.

7. From my own experience with the Coronial Service, conversations with other families over the last three years, and with the utmost of respect to the committee, I believe the English Coronial Service is in desperate need of further reform and I make the following observations and assertions:

7.1.         Reform must be anchored upon placing bereaved families at the heart of the system. My own experience has been the exact opposite and I submit that I have at times been treated with outright hostility and disdain by the Coroner’s Service.
 

7.2.         To facilitate more accountability and consistency, Coroners should be funded by the central Government and we should establish a National Coroners Service. Unchecked “independence” and the disunion between funding and governance has resulted in unclear lines of accountability. My impression is that Coroners operate like sheriffs from the “old west”. They are in-charge of their own town or “area” and are a law unto themselves; effectively accountable to no-one.
 

7.3.         There should be uniform standards, training and regular appraisals for both Coroners and Coroner’s officers. Training programmes should emphasise empathy and compassion as well as adherence to national guidelines to ensure consistency.
 

7.4.         We must unreservedly concede the adversarial nature of inquests and provide non-means-tested funding for bereaved families whenever there is a state-related death. There is just no way around the fact that inquests are adversarial.
 

7.5.         Appeals to the Chief Coroner should be made available. The power of a Coroner’s ruling profoundly affects not only justice but the grieving process itself and failures can cause long lasting damage. We should strengthen the powers of the Chief Coroner and reintroduce legislation permitting appeals directly to the Chief Coroner. Easier access to appeals would also serve as a check-and-balance for individual Coroners.
 

7.6.         The Coroner “area” system risks conflicts of interest when there is a state-related death. A Coroner’s area will cover specific state-run institutions such as prisons and hospitals that, overtime, will build a strong relationship with the court and may result in unintended bias against family. When there is a state-related death, families must have the option to nominate their Coroner.

8. My son Hayden was not treated for shock, was not appropriately monitored, and was never referred to intensive care. This was despite the fact that he was clearly in shock for 12 hours and in respiratory failure for at least 5 hours. A serious untoward incident report (SUI) into his death found multiple serious care and service delivery problems with the root causes being: a failure to identify signs of shock with an inadequate clinical response; failure to act on abnormal test results; and failure to proactively escalate to a higher level of care via specific interventions and consultation. The SUI overview of findings stated:
    

8.1.         “There were opportunities for the pathophysiology to be reversed by early intravenous fluid resuscitation with on-going assessment of the efficacy of treatments given (heart rate, blood pressure, urine output) via close continuous bedside monitoring and effective use of early-warning scores as adjuncts to clinical decision-making. There was a need for cardiovascular and respiratory support, and a clinical indication for non-resident paediatric and PICU resources and experience via consultations with CATS, and these were not accessed by the resident paediatric team to assist and guide management in an effective and timely way.” - Chelsea & Westminster SUI report

9. A medico-legal report prepared for the court by Dr Stephen Conway (independent general paediatrician) was made available to the court by our lawyers but never adduced into evidence. This report supported the findings of the Trust’s SUI:
    

9.1.         “Hayden did not receive a reasonable standard of care at the Chelsea & Westminster Hospital.”
 

9.2.         “There was a persistent failure to recognise the severity of his condition, to intervene in a timely fashion, to monitor appropriately, and to refer to Paediatric Intensive Care in a timely fashion.”
 

9.3.         “There was a failure of the Consultant Paediatrician to take a lead role in Hayden’s case.”
 

9.4.         “There was a failure to follow the Chelsea & Westminster guidelines with reference to recording observations for paediatric patients.”
 

9.5.         “The escalation protocol re the Chelsea and Westminster guideline for response to the PEWS was not followed.”
 

9.6.         “There was an overall persistent failure to appreciate the severity of shock and the progression of Hayden’s shocked state.”
 

9.7.         “Importantly there was a failure to respond in terms of diagnosis, frequency of investigation, and escalation of care to Hayden’s blood gas results, full blood count results, and standard observations.”
 

9.8.         “At 01.32 hours the pH was significantly low at 7.06 and the lactate had risen further to a significantly high level of 7.5.  Hayden was also in respiratory failure with a pCO2 level of 10.7.  There is just no way that the Clinicians involved in Hayden’s care can claim that he was not a very ill child.”
 

9.9.         “Dr Penny disagrees that the appropriate response would have been for intubation and further bolus fluid, call for Anaesthetic support, consultation with other Senior Members of the Team and liaison with CATS for transport to PICU care, and preparation to support with inotropes.  In my opinion all of the above measures were necessary if the Inquest accepts all the clinical records barring those of Dr Penny.”
 

9.10.     “The literature on shock in young children emphasises that in the stages of compensated shock the baby/child can still appear reasonably well.  Dr Penny should have been aware of this.”
 

9.11.     “Dr Alexander says that Dr Penny and the Registrar thought that the picture was not one of septic shock.  Given the prolonged capillary refill time, the persistent tachycardia and tachypnoea, the low platelet count and the blood gas analysis results, it is difficult to understand the conclusion of Dr Penny and his Registrar.”
 

9.12.     “By around 02.00 on 25 August 2016 Hayden had deteriorated further; he was described as ‘mottled++’ with a capillary refill time of 3 seconds centrally and peripherally, was ‘grunting intermittently’ and had not passed any urine since midnight. This clinical deterioration was confirmed by the repeat capillary blood gas performed at 01.32 which demonstrated extreme physiological derangement and indicated the need for immediate aggressive resuscitation.”

10. At the inquest each of the clinicians who had cared for Hayden sought to justify their respective actions. The Coroner displayed little interest in hearing from independent experts. Dr Conway’s report was never adduced into evidence and the oral evidence of Dr Jegede, as the external reviewer involved in the SUI, was essentially ignored. The clinicians' oral evidence was that Hayden was “handling well” and then he suddenly deteriorated. That evidence entirely missed the point that Hayden was in compensated shock from admission to ED at 19:30, something that should have been recognised with appropriate intervention then following.
     
11. Hayden’s heart rate was 170BPM-208BPM (extremely elevated >99th percentile), his respiratory rate was 88 (very elevated >99th percentile), his lactate rose from 4.0 at 21:00 (very high) to 7.5 at 01:30 (significantly high) to 15.9 at 05:10 (profoundly elevated), his blood pressure was 69/18 at 22:45 (critically low) and from 01:30 he was in respiratory failure with a pCO2 of 10.7. He wasn’t provided any oxygen until 04:00 (8 ½ hours after arrival). Hayden was in shock and respiratory failure, needing urgent escalated care. Dr Jegede's evidence made this clear but the Coroner appeared uninterested and instead took evidence given by the clinicians who cared for Hayden at face value without challenging and recognising its inherent implausibility.
     

11.1.     “He’s breathing fast, CO2 should be low so he’s not actually managing to lower his CO2 and that's mysterious. It was another one of his symptoms, certainly, that was high but it's not so much you could, oh, yeah, this is that symptom, this is what that means, but it just makes me worry because you then have to think why is this symptom here. Which would prompt me to put him straight onto an intubator because he’s got a pH of 7, CO2 of 10, he’s breathing at 80 and much faster than he can breathe and the CO2... The next pH is below seven, and it carries on like that and below seven and he's going to arrest.” - Dr Jegede (Consultant Paediatrician & Consultant Paediatric Intensivist), Inquest Day 3
 

11.2.     “This patient didn't have, unless I'm mistaken, any fluid with the first gas for the reasons that have already been described which I accept, so then you have a gas which is worse, significantly worse. Even if it's just one gas, the only gas you ever took you would then look back, or I would look back, and think, okay, at that gas the lactate was four, even though this child looks well this is a significant deterioration. So I'm not just looking at the one gas and focusing on it,  I'm thinking well, the child was recognised as being unwell, continued to be unwell, the unwellness was confirmed because someone did the gas and actually the gas showed quite a significant deterioration in terms of what's happening internally with that child in terms of the physiology of the child which doesn't necessarily have to be displayed externally. That’s why you do gas because otherwise we could go on what we find physically by examination. We use all of these things as agents to inform us about what's happening to the child.” - Dr Jegede (Consultant Paediatrician & Consultant Paediatric Intensivist), Inquest Day 3
 

11.3.     “At 01.32 hours the pH was significantly low at 7.06 and the lactate had risen further to a significantly high level of 7.5. Hayden was also in respiratory failure with a pCO2 level of 10.7.  There is just no way that the Clinicians involved in Hayden’s care can claim that he was not a very ill child.” - Dr Conway (Consultant Paediatrician)
 

12. The Coroner (Dr Shirley Radcliffe) placed more weighting on evidence provided by witnesses, who in any other court would be defendants, over the evidence of independent experts. She concluded that Hayden had died of natural causes with no contributing failures, gave no narrative, and made no mention of Dr Conway or Dr Jegede in either her oral summary or written findings. In a communication to the metropolitan police, she stated that Hayden’s care had been “appropriate and reasonable”. In a communication shared by the GMC (General Medical Council), she was noted to have found “no substandard care”.

13. Evidence available at the time of the inquest clearly indicated that Hayden’s care fell seriously below standards but the Coroner, for unknown reasons, appeared intent on covering this up.

14. New evidence (not available at the time of inquest) confirms that Hayden’s care was seriously below expected standards and that he would have survived had he received appropriate care. I recognise that the issue of causation was muddied at the time of Hayden’s inquest, but had the inquest been conducted in a fair, proper manner with an open mind, the Coroner would have at least recognised and paid respect to Hayden by acknowledging the failings in his care. We now know that Hayden would have survived on the balance of probabilities, but any failures that fall seriously below expected standards that deprives a child a 49% chance of survival or even a 4.9% chance of survival is devastating to parents and should still warrant acknowledgement rather than suppression and disrespect.

14.1.     “By the time Hayden had been admitted to Mercury Ward at around 23.00-24.00 he had deteriorated from a cardiovascular perspective, was clearly in shock and required immediate aggressive resuscitation. Dr Kemi Bako was negligent in not recognising Hayden’s clinical status at around 23.00-24.00 and in not facilitating immediate aggressive resuscitation. It is my opinion, on the balance of probability, that had Hayden received appropriate treatment at around midnight on 24-25 August 2016 then he would have been stabilised to the degree that he could have been transferred to a Paediatric Intensive Care Unit and would have survived.” - Dr Playfor (Consultant Paediatrician, Consultant Paediatric Intensivist)
 

14.2.     “Dr Jonathan Penny was negligent in not recognising Hayden’s clinical status at around 02.00 and in not facilitating immediate aggressive resuscitation. It is my opinion, on the balance of probability, that had Hayden received appropriate treatment at around 02.00 on 25 August 2016 then he would have been stabilised to the degree that he could have been transferred to a Paediatric Intensive Care Unit and would have survived.” - Dr Playfor (Consultant Paediatrician, Consultant Paediatric Intensivist)
 

14.3.     “From my clinical experience caring for critically ill children, and integrating the data that we have regarding the time course of Hayden’s deterioration it is my opinion, on the balance of probabilities, that had Hayden received appropriate treatment with aggressive intravenous fluid resuscitation, intubation, mechanical ventilation and the administration of inotropic agents prior to 04.00 on 25 August 2016 then he would have survived.” - Dr Playfor (Consultant Paediatrician, Consultant Paediatric Intensivist)
 

14.4.     “I concur with Dr Playfor’s review of the literature that over 50% of children will survive. Therefore it is my opinion that Hayden would have survived with appropriate intensive care on the balance of probabilities.” - Professor Burch (Consultant Paediatric Cardiologist)

15. The GMC opened a full investigation into the Consultant (Dr Jonathan Penny) and, in direct conflict with the Coroner’s findings of “appropriate and reasonable” care, they and their expert found Dr Penny’s care to have fallen seriously below the expected standards of a reasonable competent paediatric consultant, and they alleged impairment due to misconduct relating to 30 specific matters. Dr Penny’s representatives argued that the Coroner had criticised the SUI and asked the SUI author to apologise to Dr Penny. Shortly thereafter, the GMC closed their investigation without action. It is possible that, if not for the Coroner’s measures, the GMC would have, at least, issued Dr Penny a warning.
     

15.1.     “The expert identified that Dr Penny’s standard of care was seriously below the expected standard in respect of his failure at 0145 on 25 August to: document his assessment and management plan for Hayden and his discussion with Hayden’s parents; recognise and treat metabolic and lactic acidosis due to circulatory failure; seek advice from paediatric intensive care team about Hayden’s deterioration and clinical status; stay with Hayden and ensure timely management, reassessment and escalation. If other commitments meant that he was unable to stay, Dr Penny’s failure to contact the non-resident consultant for immediate assistance was seriously below the expected standard.” - GMC report on Dr Jonathan Penny
 

15.2.     “The expert identified that Dr Penny’s standard of care was below the expected standard in respect of his failure to treat profound acidosis (at 05.15 on 25 August) in a timely way with immediate advice from paediatric intensive care team and potentially, dependant on skill set, to act immediately to intubate and ventilate Hayden. The expert said that Hayden was extremely unwell and that the real opportunity to intervene and stabilise Hayden had passed. He noted that there was a 35 minute delay in contacting the paediatric intensive care team for advice and that no action other than an intravenous fluid bolus was taken between this time and Hayden’s cardiac arrest at 06.00.” - GMC report on Dr Jonathan Penny
 

15.3.     “The expert (an experienced consultant paediatrician) said that the standard of care provided by Dr Penny to Hayden on the night of 24 and 25 August 2016 fell seriously below the standard expected of a reasonable competent paediatric consultant in relation to the assessment, decision making, urgency of care, leadership/handover, follow up and documentation.” - GMC report on Dr Jonathan Penny

16. On 2 September 2019 (just over 3 years after his death and just under 2 years after the inquest), the Trust and NHS Resolution (again, in direct conflict with the Coroner’s findings) made a full admission of liability for Hayden’s death:
     

16.1.     “The letter of response on behalf of the Trust dated 2 September 2019 should be read as a full admission of liability on behalf of the Trust in relation to the tragic death of Hayden at 07.15 hours on 25 August 2016. The expert evidence obtained on behalf of the Trust indicates that had the severity and progression of Hayden’s condition been recognised and acted upon earlier, he would have survived beyond 07.15 hours on 25 August 2016” - Weightmans / NHS Resolution, 23 September 2019

17. Disclosures have since exposed that the inquest contributed to the delay in admissions:
     

17.1.     “No admissions to be made by the Trust, given the criticisms made of the SI report at the inquest” - Harbens Kaur (former Head of Legal for the Trust), post-inquest briefing, 5 February 2018

18. On 21 January 2020, Hayden’s case was covered by BBC News, BBC Breakfast and BBC Radio 4. This delay in admission was characterised as “the real scandal” by former Health Secretary Stephen Dorrel:
     

18.1.     "The real scandal actually of the Hayden case is that it took 3 years to reach a decision about the cause of the loss of his little life. He was on this Earth for 6 days and it took us 3 years to work out the Hospital got it wrong.” - Former Health Secretary Stephen Dorrel, BBC R4 Today, 21 January 2020

19. The issue of the SUI report, the report author and how they were both handled by the Coroner is disturbing. I want to start by noting that the Trust have stated unequivocally that, despite what transpired at the inquest, the Trust’s board and the SUI author stand by the original SUI report, its criticisms and its action plan. I also remind members and readers that the Trust and NHS Resolution have made a full admission of liability for Hayden’s death.
     

19.1.     "Dr Davis[sic] is clear that with the information she had at the time of writing the SI report, which included statements from staff, information from both you and your wife and the clinical notes, her opinion was correct at the time, she is very clear as Lesley [2]and I were when we met with you that the original SI still stands and the action plan is monitored in the trust" - Pippa Nightingale (Chief Nurse, C&W Hospital), 3 April 2019

20. An addendum to the SUI was prepared by the Trust's investigation panel on 15 August 2017 (3 months before the inquest). That addendum noted that it was probable that Hayden’s death would have taken place in any event and significantly modified the conclusions in the original report: the section on “overview of findings” no longer highlighted the failures to intervene; the previously identified care and service delivery problems were minimised; and the revised root cause analysis now singularly failed to make any reference to the substandard care previously recognised.

21. We were excluded from the SUI addendum process. When questioned at inquest as to who had made the decision to exclude us, the SUI author nervously declined to answer. I noted the Coroner was quiet with a bemused smile. We would find out a year after the inquest that it was the Coroner herself who had asked for the SUI to be reconsidered or rewritten but, following external legal advice, the Trust provided an addendum instead. The Trust’s Chief Nurse noted this request from the Coroner was wholly unique and considered it “strange”:

21.1.     “That was a very strange position for us to be in. I have to say I’ve never been in a place where we’ve had to take legal advice under a request from a Coroner cause it was quite a strange request to come ... hence why we didn’t quite understand actually what we were being requested to do… and we were very intentional in not repeating the whole review and the SI report because we felt very strongly that shouldn’t do that. We can’t just remove something that we put and signed ourselves to and write a new one.” - Pippa Nightingale (Chief Nurse, C&W Hospital), 6 September 2018

22. Matt Hancock, our SofS for Health and Social Care, highlighted the Coroner’s intervention as “unusual” in a letter to Edward Argar, then Parliamentary Under Secretary of State at the Ministry of Justice:
     

22.1.     “A key issue the family raised was how they felt they were treated by the coronial system. They felt that the ‘system’ including the coronial system caused more pain and distress and raised new questions rather than answering critical ones.

I understand from the family that they are seeking a new inquest. Such matters are for the coronial system, but it is clear to me that the way families are treated by the coroners’ system can have a lasting impact on them. It would be helpful to understand what efforts are underway to support bereaved families so that the process can feel less adversarial than it did to this family.

I also understand that, in this particular case, the coroner raised concerns about the Serious Untoward Investigation conducted by the NHS. This would seem to me to be unusual in terms of commenting on an investigation process which is designed to identify areas for improvement. This warrants further consideration as to how the health and coronial systems work together to ensure that learning from such serious incidents is maximised. I would value the opportunity to discuss formally.” - Rt Hon Matt Hancock MP, SofS for Health and Social Care, 28 May 2019

23. The Coroner asked an independent expert (Dr Martin) to comment on the care afforded to Hayden but that expert was not a general paediatrician and therefore was not qualified to comment on the care (this point was conceded by the Coroner at the pre-inquest review hearing). However, the improper opinion on care, coupled with implausible refutations from clinicians, appeared to be a driving factor in the Coroner making the “strange” and “unusual” request to the Trust. The Trust’s head of legal postulated that the Coroner’s motivation for asking the SUI to be reconsidered was to limit evidence, save expense or avoid an inquest altogether:
     

23.1.     “It may be that the Coroner’s motivation in asking our SI team to reconsider their conclusions may be to try to limit the amount of evidence that needs to be called to satisfactorily conclude the inquest (or possibly to avoid the inquest at all if, but for the possible shortcomings, this was a natural death).  At the moment there are conflicting opinions on whether the care was satisfactory, and unless our SI team review their conclusion the Coroner is going to have to explore these at Inquest to reach a conclusion. This will mean calling the expert at the coroner's expense, plus a longer inquest no doubt involving the SI report's main author. If the SI is revised then this all goes away for the coroner, so long as it is properly explained to the family.”  - Harbens Kaur (former head of legal, C&W Hospital), 13 June 2017

24. I am compelled to believe that, having failed to convince the Trust to fully retract their findings and criticisms, the Coroner, further empowered by opaque evidence from senior clinicians, inappropriately used the inquest to do what the Trust would not: destroy the credibility of the SUI author, demand the report be “removed from the record”, reverse learnings, cover-up the severity of the failures, absolve accountable clinicians and leave what she claimed as “very little left of the criticisms in the serious incident report”. This was carried out as so:

24.1.     Failing to understand how the PEWS (paediatric early warning score) policy actually operated. The Coroner misunderstood the rationale behind the scoring system, mistakenly attributing to “sleep” what is actually an AVPU score which does not score for sleep but scores for alertness and thereafter referring to the PEWS "in real terms" by repeatedly and wrongly subtracting 1 from every PEWS score attributed to Hayden and thereby excusing the lack of escalation. By 02:30, Hayden’s PEWS score had reached 5 (out of 6) indicating need for paediatric and anaesthetic review and consideration of a crash call. The Coroner wrongly asserted that this score was not five but instead was four “in real terms”.
 

24.1.1.  The Coroner further excused the need to perform AVPU assessments by stating “babies need rest and sleep”. She did not smirk while making this statement but nevertheless I found it very hurtful given the context. My comment here is that Hayden was seriously ill, required continuous monitoring, was fading in and out of consciousness, and is now permanently at rest.
 

24.2.     Upon comparing the changes to the PEWS policy before and after Hayden’s death, the Coroner mistakenly interpreted the changes to have included more flexibility and diminished the criteria for escalation when in fact the opposite was true. It is unclear whether she truly misread the changes (saw what she wanted to see), but leaning on this mistaken interpretation, she postulated that the changes were perhaps to allow more clinical judgement (thereby guarding clinicians who fail to escalate against criticisms in the future). The PEWS policy had actually been fortified. It added a new requirement for urgent registrar review when systolic blood pressure < 70 (regardless of other scores), changed the level 4 colour-coding from yellow to red and mandated following the “highest action” if there were discrepancies in guidelines.
 

24.2.1.  One of a Coroner’s core duties is to issue Regulation 28 reports (PFD: prevention of future deaths). I submit that the Coroner’s proclamations and actions with regards to PEWS policy and the SUI amounted to a GFD (guarantee of future deaths). Had it not been for the Trust choosing to ignore her, more deaths from failures to identify and act on deteriorating babies in shock would have been almost certain.
 

24.3.     Not allowing the SUI author to give their own independent evidence but instead led them to simply agree with the Coroner’s interpretation of events which, in fact, was very different to the scenario which had been presented in the original SUI. The transcript shows great swathes of narrative from the Coroner, almost invariably followed by a “Yes” from the SUI author. This resulted in the contention by the Coroner that it was "shocking" that the SUI report was with NHS England and that it was "clearly not reflecting the evidence" and that it should be “removed from the record”.
 

24.4.     Before allowing interested parties to question the SUI author, the Coroner criticised the author’s peer-reviewed work stating: “I feel that the SI findings do not quite reflect the clinical picture nor, indeed, do they reflect the considerable input by senior members of staff at all times in his care while he was in their care”.
 

24.5.     Wrongly adopting the preposterous argument made by the Consultant and his barrister that Hayden’s outward “appearance” was equivalent to Hayden’s “clinical picture” when in fact, as noted by all independent experts qualified to comment (including that of Dr Jegede who gave oral evidence at the inquest), Hayden’s “clinical picture” was of a seriously ill baby in shock and respiratory failure.
 

24.5.1.  “I’m thinking well, the child was recognised as being unwell, continued to be unwell, the unwellness was confirmed because someone did the gas and actually the gas showed quite a significant deterioration in terms of what's happening internally with that child in terms of the physiology of the child which doesn't necessarily have to be displayed externally. That’s why you do gas because otherwise we could go on what we find physically by examination. We use all of these things as agents to inform us about what's happening to the child.” - Dr Jegede (Consultant Paediatrician & Consultant Paediatric Intensivist), Inquest Day 3
 

24.5.2.  “At 01.32 hours the pH was significantly low at 7.06 and the lactate had risen further to a significantly high level of 7.5.  Hayden was also in respiratory failure with a pCO2 level of 10.7.  There is just no way that the Clinicians involved in Hayden’s care can claim that he was not a very ill child.” – Dr Conway (Consultant Paediatrician)
 

24.5.3.  “The literature on shock in young children emphasises that in the stages of compensated shock the baby/child can still appear reasonably well. Dr Penny should have been aware of this.” - Dr Conway (Consultant Paediatrician)
 

24.5.4.  “By around 02.00 on 25 August 2016 Hayden had deteriorated further; he was described as ‘mottled++’ with a capillary refill time of 3 seconds centrally and peripherally, was ‘grunting intermittently’ and had not passed any urine since midnight. This clinical deterioration was confirmed by the repeat capillary blood gas performed at 01.32 which demonstrated extreme physiological derangement and indicated the need for immediate aggressive resuscitation.” - Dr Conway (Consultant Paediatrician)
 

24.5.5.  “I really do not understand the argument that as Hayden had disseminated enteroviral infection and associated myocarditis there exists a defence for the failure to treat him aggressively for a picture of shock. The diagnosis was not known at the time. By virtue of the clinical picture alone Hayden needed full and much earlier Intensive Care.” - Dr Conway (Consultant Paediatrician)
 

24.6.     After robust questioning by the Dr Penny’s barrister whereby the SUI author was pressed to suggest that a new SUI report needed to be written, the Coroner feigned shock and stated that it should be made “very clear to NHS England that the previous reports be removed from the record”. I suggest that the Coroner’s shock was not real because we now know that it was the Coroner herself who had urged the Trust to consider a new SUI report in the months leading up to the inquest. I also reiterate that the Trust has since stated, unequivocally, that its board and the SUI author stand by the original SUI and that no new report will be written.
Following the aforementioned robust questioning by the Consultant’s barrister, the NHS Resolution solicitor stated “I’m not sure how much more I can add” which was followed by the Coroner, smirking and stating “I thought that might be a sensible approach”. This left us staggered.
 

24.7.     Allowing Dr Penny’s barrister to demand an apology for the clinicians including Dr Penny himself. This was particularly grotesque considering it was performed in-front of us and the Coroner, again, smirked as it happened. Dr Penny would later use this event to claim that the Coroner herself had asked the SUI author to apologise to him when defending his misconduct to the GMC.

Imagine attending your own child’s inquest, hoping (but not expecting) to receive an apology from the clinicians who failed him only to have to watch in horror as the clinicians themselves receive a specious apology in-front of you for being “upset” at warranted criticisms their own employer had made of them.
 

24.8.     Theatrically picking up her pen and scribbling out the SUI action plan (a plan intended to ensure learning) stating that point 10 “should go” because she didn’t want the clinicians to have to go through appraisals with clinical governance. The Coroner was (or should have been) aware that the action plan had already been completed almost 12 months prior. The Trust insists they had shared this fact with the Coroner and distanced themselves from this particularly shameful act.
 

24.9.     Failing to integrate any of Dr Jegede’s evidence into her findings. In a letter to our MP (Ruth Cadbury), our solicitor wrote:
 

24.9.1.  “As an advocate-who, incidentally, was given no opportunity to make any oral submissions following all the oral evidence- it was abundantly clear to me that the Coroner had essentially prepared her conclusion prior to the start of the final day’s evidence from Dr Davies and Dr Jegede. I formed that view based upon the approach adopted to questioning Dr Davies and the fact that immediately following Dr Jegede's evidence the Coroner read out her conclusions without incorporating any of that evidence. That that impression was equally clear to the family is regrettable. The family should have felt they were at the heart of the inquest process: that was certainly not the case here and they formed the view that issues had been pre-determined.”
 

25. In her oral summary of the inquest at the end of Day 3, the Coroner spoke on our behalf, surmising that we must have been “extraordinarily distressed” to have lost our baby and then to have learned (via the SUI) that he could have been saved had the treatment been different. That was not how we felt, and we found the fact that she had said it to be prodigiously offensive. As bereaved parents, my wife and I can never get Hayden back; however, at the time of the inquest there were two things that were cathartic and brought us some peace:

25.1.     (1) An acknowledgement that Hayden existed and that his care fell seriously below expected standards, and that he died having not received the care he deserved as a citizen of the United Kingdom. There is legal significance as to whether Hayden, due to neglect or negligence, lost a 51% chance of survival or a 49% chance of survival. However, for any parent, an unnecessary loss of a 49% chance of survival would still be devastating; the Coroner appeared to be incognisant of this and devoid of empathy.
 

25.2.     (2) That learnings would be made to prevent future deaths.

26. In doing what she did with the SUI, the Coroner took both away from us.

27. In addition to the serious failures I have detailed above, there were various procedural shortcomings which pale in comparison. However, I believe sharing some of them may help paint a fuller picture of why we feel the Coronial Service failed us end-to-end:
     

27.1.     Only days after Hayden’s death, the Coroner’s officer, unprompted, described over the phone in gruesome detail how my son’s autopsy would be performed. Describing how his brain and other organs would be removed and examined. Tact and sensitivity were lacking.
 

27.2.     Inquests are to be held within 6 months of death, but Hayden’s inquest was not held until almost 15 months after his death. I recognise here that this is not unusual and understand many courts are under pressure.

27.3.     The Coroner initially did not even agree that there should be an inquest into Hayden’s death notwithstanding that the duty to do so was clear under s4 (2) (a) Coroners and Justice Act 2009. The Coroner knew the Trust was conducting a serious incident investigation but the week before the report was due to be released, the court notified us that Hayden’s case was to be closed without an inquest. It was only following representations by our lawyers supported by the Trust’s position that the death was potentially avoidable that led to a review of that decision.
 

27.4.     Inquests are court proceedings and I was to give evidence. I thus expected a formal invitation, but one was not sent - digital or hardcopy. This was unexpected and gave me an impression of disorganisation and unprofessionalism. Given our experience with the Trust, it was an unwelcome reminder.
 

27.5.     The Coroner’s officer shared with me that the expert instructed by the Coroner to comment on care and causation was given only a selection of the evidence provided by the Trust. I found this odd given neither the Coroner’s officer nor the Coroner are general paediatricians and so were not qualified to decide the relevance of select evidence. I believe Coroners should provide all available evidence to experts.
 

27.6.     The Coroner’s officer insisted that all communications to the court should come through legal representatives rather than directly. I understand the desire for formality, but I do not think this ethos is proper; especially given the gravity of the situation and the Chief Coroner’s position that the family should remain at the heart of the system.
 

27.7.     At the pre-inquest review hearing, it was conceded by the Coroner that the expert she had instructed to comment on care (Dr Martin) was not appropriately qualified. It was agreed that Dr Conway’s report would be shared with Dr Martin so that he could have a fully informed picture of the care in order to properly comment on causation. It was not until the day before the inquest that we were informed that Dr Martin had not been provided with a copy of Dr Conway’s report. We do not know whether this was deliberate or a mistake.
 

27.8.     The Coroner’s officer offered to return Hayden’s tissue samples with his body for burial. We notified the officer that a cryogenics company would collect the tissues for storage. Thus, began a two-month saga whereby our cryogenics company chased the court and St Thomas’ Hospital for Hayden’s tissues (St Thomas’ performed Hayden’s post-mortem). During this period the Coroner’s officer stated that he did not know why the tissues were not being released and attributed the delays to St Thomas’ Hospital. Eventually the Coroner’s officer admitted that he himself had asked St Thomas’ Hospital to withhold the tissue samples. His bungling explanation was that there was a past unrelated case that had required further examination of tissues and having remembered that prompted him to withhold Hayden’s tissues. This explanation and the manner in which it was given did not appear sound but, in any case, it cannot excuse two months of dishonesty and deception. We would have agreed to yield Hayden’s tissues for 2 months or 2 years had it been explained, and had we been asked.
 

27.9.     We were unaware that the Coroner assigned to Hayden’s case had changed from Dr Fiona Wilcox to Dr Shirley Radcliffe until we encountered Dr Radcliffe at Hayden’s pre-inquest hearing. Disclosures from the Trust show that the Trust was kept apprised of these changes but we, the family, were not.
 

27.10. Following the inquest, I wrote a heart-felt letter of concern to the Coroner and was told by the Coroner’s officer to expect an answer within two weeks. It’s been almost 3 years without an answer.
 

27.11. During the inquest, the Coroner almost invariably referred to Hayden as “the baby” or “this baby” rather than by his name or “baby Hayden” – an approach I felt dehumanised Hayden.
 

27.12. We were charged £1500 for the transcripts to our son’s inquest (£500 per day). After mild scrutiny, I discovered that legislation (Coroners Allowances, Fees and Expenses Regulations 2013) clearly outlines fees that may be charged for court transcripts and calculated that we had been overcharged by ~30% (£500). It took a year of back and forth before the court conceded and offered a full refund. The Coroner would not share if this had happened to other families nor explain how it had happened to us. According to the Trust, they were not likewise billed and I’m unaware whether other interested parties were likewise billed.

28. I have outlined in detail my concerns about the Coronial Service based on my own personal experience and shared how it has impacted me and my family. I have given examples of how the inquest was exceptionally adversarial, clearly inadequate in terms of investigation, and appeared biased and predetermined. I also shared how we had to endure some ugly events such as having to watch in horror as the clinicians received an apology for being “upset” at warranted criticisms of their care at my son’s own inquest.

29. I am acutely aware that the first reaction for many will be to consider my experience to be an isolated incident. I am unable to make a fully informed judgement with respect to other cases but as a result of my conversations with many families, I am driven to believe that there is at the very least, an unevenness between courts that demands amelioration.

30. This letter was not easy to write but I hope out of it, Hayden’s short life will contribute to genuine change so that future bereaved families are placed at the heart of a Coronial Service that invariably heals rather than compounds trauma, suffering and grief.

1 September 2020