Thread by @Shame_On_TEWV

CW: Suicide

Zoe's inquest. Day four.

#JusticeForZoe

The coroner begins with a short recap of the inquest, and re introduces all the people present in the court. He provides a description of the day - arguments for whether article 2 is still engaged, submissions from 1/

counsel and arguments for regulation 28 report. Finally, the finding of fact and the inquest conclusion.

Ms Stone, Jean's barrister begins with arguments for article 2. She states that her submission is that this continues to be a case where article 2 is engaged. Her pre 2/

inquest review arguments included a systems duty breach as there was no effective system in place to protect life (in this case specifically autistic people's lives). There was an acceptance by TEWV of findings of the serious incident review (SIR). Nothing in evidence which 3/

could disengage article 2.

Ms Gillson, TEWVs representative, advises the coroner to review the position on article 2 and states it is proper it is revisited. She queries a systems duty failure, stating that although the autism service provision may not be ideal, it does at 4/

least exist. She goes on to discuss the positive operational duty and states that this is not a Rabone type case (in reference to Rabone Vs Pennine Care) where this could apply. Jean's barrister responds and states that her position is maintained in opposition of this.

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We move on to arguments for conclusions. Jean's barrister says that Zoe's family will accept a short form conclusion of suicide, but would suggest the addition of a narrative. She argues that the public interest points to a narrative as the care from TEWV and the impact this 6/

had on Zoe were a factor in her death and this supports the inclusion of a narrative. She suggests that the narrative should include the accepted care failures found by the SIR including the failure to deliver appropriate care and reasonable adjustments, plus the EUPD label 7/

and the delay in removing this from Zoe's notes. She suggests that the detrimental impact this had on Zoe led to her disengagement thereby contributing more than minimally or trivially to her death. This is the primary suggestion, however she also submits an alternative 8/

which is simply a narrative finding of the same matters. The coroner now begins discussing coronial law and what is appropriate and accepted practice within case law. He suggests that what Jean's barrister is suggesting will make the conclusion very long and this would be 9/

against coroners guidance. Jean's barrister argues that it is about what is appropriate case by case and that brevity is a flexible concept. Questions are asked about public interest and what a long conclusion would bring given that the coroner has and will set out his 10/

findings in a public inquest where the press are present. He sums up Ms Stone's arguments that she is suggesting a narrative finding or a short form plus narrative, and that this should include the found failings. She comments that this will be a formal recording of Zoe's 11/

death and as such these factors are important to include.

They move on to regulation 28 reports (to prevent future deaths) and Jean's barrister states that Zoe's experience illustrates the risk associated with a lack of autism awareness and competency in delivering services. 12/

The coroner asks if this is not a wider issue than just TEWV services. She agrees.

The coroner quotes Mr Robertson's evidence that autism services are nationally underdeveloped, and goes on to suggest that rather than just TEWV there should be a wider audience. He suggests 13/

that he should write to the Minister of State as "this falls 100% squarely on his desk". He also suggests he write to the CCG, as well as TEWV. He comments that the autism training they are doing is just the beginning.

Jean's barrister agrees but comments that given the 14/

commissioning structure is not unique, perhaps this should go higher, to NHS England. The coroner agrees they should be copied in, but considers that they are unlikely to address it. He says they may "spit it back" and then says "but let's suck it and see". He comments that 15/

it would be a disservice to Jean's work to not "widen the door".

Jean's barrister then mentions the conversations yesterday about data collection and analysis at the Trust. She suggests that an incomplete picture was presented to the court so we are unable to know what 16/

information is truly captured and analysed by TEWV and how this feeds into the Trust's business strategy for service provision. The coroner asks, so the Trust should have a more structured view of data? She replies yes.

We move on to Ms Gillson, TEWVs representative, who 17/

begins her arguments by stating that the position of the law is available to the coroner. She suggests that a short form conclusion (such as suicide) is preferred to a narrative. She explains that the Trust has openly agreed to failings so a narrative is not required as the 18/

public interest is already met.

She moves to discuss what would be in a narrative, and states that TEWV have not accepted that they failed to provide specialist autism services, as this is a commissioning decision. As such, it should not be put forth in this manner. Jean's 19/

barrister apologises for the wording she used and refers the court to her original submission, which the TEWV rep agrees with.

The TEWV rep moves on to discuss regulation 28 reports and states that these reports should only go to people who have the power to act. She 20/

suggests that lack of autism awareness/service is a national problem and as TEWV cannot change this, it would be inappropriate to direct this to them. The coroner disagrees and says there is no reason why if he directed this report to TEWV they couldn't just respond and 21/

explain why they cannot act to change this.

The TEWV rep goes on to suggest that the relevent CCG is the North Yorkshire group and that she agrees the Department of Health is a sensible choice too. She says she is unsure about NHS England or what they would do.

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She addresses the possibility of including TEWV as a recipient of the regulation 28 report, and suggests that this is unnecessary given the extensive work the Trust is undertaking to improve services for Autistic people. She says in the spirit of transparency, TEWV would 23/

happily provide evidence of ongoing service development and of data auditing practices. She suggests that there is sufficient evidence that TEWV both recognised areas which failed & have taken action to change this. She suggests TEWV are copied in to the regulation 28 report 24/

but are not a named recipient. The coroner asks, so you are saying TEWV should not be required to respond but can provide informal letter responses? She says yes. Jean's barrister states that it should be both - a regulation 28 report and informal letters.

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We break for the coroner to make his conclusions. We have been informed it will not be before midday.

#JusticeForZoe

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We are being called back now for the conclusion. Will update as soon as we finish.

#JusticeForZoe

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Conclusion

"Zoe died by suicide contributed to by actions and inactions of mental health clinicians entrusted to keep her safe in a care system which was underdeveloped to manage an autistic individual with complex needs".

#JusticeForZoe

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Article 2 was engaged & it was found the positive duty and the operational duty to protect Zoe's life and provide her with adequate care were breached.

There is much more to describe, I will fully write it up later.

For now, know that justice was done.

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#JusticeForZoe

So, returning to before the conclusion.

#JusticeForZoe

We return from the break for the conclusion and take a moment to begin as the coroner has lost his glasses.

He describes that over the past three days we have heard evidence and written submissions from counsel. He 30/

begins to discuss Article 2 and refers back to the pre inquest review hearings where based on the evidence at that time he felt the positive duty was engaged. He explains that there was evidence of Trust breach of requirement to manage a patient with complex needs and autism 31/

and to provide adequate care. He says at the time of the pre inquest review there was the possibility of an operational duty breach given some limited evidence that there was a real and immediate risk to Zoe due to a lack of care. He states at this time, having heard the 32/

evidence, his view has not changed. Given the depth of the inquest he has been able to look at broader circumstances surrounding Zoe's death and examine systemic failings. He states there is clear evidence of an operational breach. Zoe was discharged from hospital on 20th May 33/

with no effective care, her risk on discharge was predictably fluctuating due to the recent addendum to her notes, and as stated, her notes changing were a dynamic risk factor. There was a real and immediate risk to Zoe. There was also a clear breach of the positive duty to 34/

protect Zoe. The coroner states that he determines that Article 2 continues to be engaged. Given this, he is not limited to be brief in his conclusion. There is discussion now of what to include and just because he *can* include more detail doesn't mean he *must*. 35/

In regards to the Trust's failings, this will be part of public findings. He discusses 6 issues of contribution to Zoe's death. Inadequate and erroneous diagnosis and formulation; the ongoing issue of EUPD in Zoe's notes; lack of autism awareness in the Trust and lack of 36/

reasonable adjustments; lack of care coordination and care plan; issue with access to Zoe's notes; lack of access to specialist services.

The coroner explains that he will be delivering a short form conclusion with a narrative. There are now discussions of the law and what 37/

failings will be included. He states it is appropriate to give a narrative given this is an Article 2 inquest. He states that how Zoe died is much more than just "by what means".

We now have a long summary. Zoe Emma Zaremba, 25yrs, born 7/1/95 in Northallerton. He describes 38/

the medical cause of her death. The coroner now reads the list of evidence presented to the court in writing. Then the list of people who provided spoken evidence in court.

We begin a timeline of events following Zoe's disappearance. Zoe was last seen on the night of 39/

June 13th & reported missing on June 14th. Zoe was at high risk. The coroner describes her mental health & suicide attempt history. Extensive searches were undertaken by police & mountain rescue. On June 21st Zoe's body was found in a rural area near her home by a dog walker. 40/

(Samaritans guidelines on reporting suicide recommend not describing a death by suicide as quick or painless, however, I feel I must balance this with the potential immense distress experienced by people who have imagined Zoe suffering for many days before she was found.) 41/

While I will not be disclosing the medical cause of death, the autopsy report suggests that Zoe most likely died the day she went missing.

As one of the people who took part in searches for Zoe, I know I have been tormented these past two years by the possibility that I 42/

could have found her alive, or that she was suffering for many days. I hope this one fact will help alleviate these thoughts in others.

The coroner now describes the medical cause of death and the police investigation into the possibility of third party involvement. The 43/

coroner states that Zoe left no note but her twitter feed indicated her state of mind. She was experiencing ongoing distress and crisis. The coroner now moves on to discuss whether evidence suggested Zoe had capacity, which would be relevant to a finding of suicide. He states 44/

that Zoe was very aware of the medical implications of her actions. He describes Zoe as intelligent and capable and says he finds no evidence to suggest that she did not have capacity - quite the opposite. He also states the police investigation concluded there was no 45/

evidence of third party involvement. He makes further discussion of sensitive details and how these have also been a part of his consideration. He asks, am I satisfied that Zoe intended to end her life? Yes. Zoe died because of suicide, not misadventure or by accident. He 46/

again repeats the reasons for arriving at this conclusion and states, she intended to end her life.

We now move on to further findings around Zoe's death. The coroner gives a full a detailed timeline of Zoe's life beginning in childhood. I will not include all details of 47/

her early life, but from the employment tribunal process beginning in 2016, Zoe began to struggle. The coroner states that after leaving employment permanently in 2018, Zoe took to Twitter in early 2019 and enjoyed twitter and her online community. He says she got benefit and 48/

gave just as much. He describes Zoe's online presence as "work" in the sense that she was sharing her story, educating people, and supporting others. The coroner says that this work restored some meaning to Zoe's life. The coroner describes how Zoe's life was impacted by 49/

trauma. She repeatedly asserted that she didn't have EUPD and in 2018 was eventually assessed as not having EUPD. The coroner states that the GP removed it from their system immediately because they were empathetic towards Zoe and understood how much pain it caused her. He 50/

states that Zoe was seeking therapy but no autism specialist therapy was available from TEWV in North Yorkshire. Due to this, an independent funding request was submitted by the GP to fund therapy at the Tuke Centre in York. The coroner describes how Zoe was often 51/

misunderstood as hostile and unhelpful by TEWV staff and her non verbal communication did not express her deep distress. He explains that she may have seemed matter of fact when she was actually deeply emotional. The coroner describes Zoe's love of sport and that a sports 52/

injury stopped her from continuing with gymnastics which she loved to do. This was detrimental to her mental health. Zoe was very open to receiving therapy adapted to autism, and the Tuke Centre recommended she have both psychological therapy; a "sensory diet" plan (related 53/

to how Zoe managed sensory over and under stimulation); a social care assessment; and reasonable adjustments. On May 15th 2020 Zoe was detained under section 2 of the mental health act. The coroner describes some observations notes from her hospital stay which indicate how 54/

distressed Zoe was at this time. He states that the Trust assessed Zoe as high risk of death by misadventure. At this point Dr Kuster agreed to informally oversee Zoe's care following her discharge and provide follow up calls. The coroner says that evidence has emerged in the 55/

court which indicates that Zoe had PTSD, although this was not officially diagnosed. The coroner explains that trauma is different in autistic people, that what may seem small to someone else can be deeply traumatising to autistic people. He also describes how Zoe's memory 56/

was highly vivid and this meant she replayed her traumas over and over again. The coroner says you cannot uncouple autism from mental health in an individual, they must be considered together. Zoe had an apparent label of EUPD in her notes which she discovered by accident 57/

there is debate over where she first discovered this). The coroner explains that Zoe read her notes to help with her process of understanding her care and what others thought of her. He describes that there was no evidence of an EUPD assessment ever taking place, but that 58/

there can be some conflict between ASD Vs EUPD diagnosis. Zoe challenged the community team on the diagnosis of EUPD and her feelings of injustice and distress were profound. The characterisation of EUPD behaviours as manipulative and unhelpful caused difficulties in the care 59/

Zoe received from staff, as this is how they interpreted her. Staff failed to address the validity of the EUPD label. Nothing was done to expunge it from Zoe's notes despite the implications for her wellbeing. The coroner comments that even if they truly believed Zoe had EUPD 60/

they still didn't provide her treatment for EUPD. He states there was not much evidence of empathy from staff towards Zoe. The coroner says that between October 2018 when the diagnosis was refuted and May 2020 when the addendum to Zoe's notes was finally added Zoe had 25 A&E 61/

visits and 12 admissions to hospital, 9 under the mental health act. The coroner comments "each precipitating event took a mental toll on Zoe". He states that when someone *finally* did look at her records, it took mere days to fix. The coroner quotes Jean and says Zoe "could 62/

not live with an incorrect diagnosis". He says he agrees with Jean and given how the diagnosis impacted on how clinicians responded to Zoe, this had a detrimental effect. The loss of trust this caused continued and Zoe disengaged from services. The coroner states that the 63/

consequences of the breakdown meant that Zoe had no care coordinator. There should have been someone to manage a package of care, to be a point of contact. He describes ad-hoc plans from Elm Ward but there was no community team input and so no care coordination. The coroner 64/

states that the want of a care plan meant discharge plans from hospital were improvised. On her final admission to hospital, a 72 hour follow up was arranged with ward staff and Dr Kuster was to provide ongoing calls. There was no developed plan and this is a worry. 65/

The coroner states that Zoe "lurched from crisis to crisis".

Zoe's discharge in May was motivated by an attempt to reduce harm to Zoe. At discharge her level of risk was no more significant than usual but it must be considered that her usual risk level was extremely high. 66/

The want of a coherent plan & a care coordinator put undue pressure on Dr Kuster. Meetings were not documented, there was no good up to date notes to assist staff with her care.
On June 10th Dr Kuster missed a scheduled call with Zoe & provided no follow up after that. 67/

The coroner states that the failure to have an effective care plan contributed to Zoe's death. Dr Fardo from the Tuke Centre was not updated about Zoe's lack of relationship with services. Zoe's disengagement was attributed to Trust failings. Zoe's autism was not understood 68/

or accommodated and she was wrongly diagnosed with EUPD which impacted on how staff interacted with her. Zoe persistently stated that EUPD was the key reason she disengaged. 69/

The coroner states that the court heard that autism does not intrinsically lead to suicide, but that it impacted on how Zoe managed her feelings and behaviours related to the trauma she experienced. If the root causes of her disengagement had been reduced, she would have been 70/

at a much lower risk. It was entirely foreseeable that Zoe would repeatedly return to crisis. This lack of autism awareness/understanding and the lack of person centred care was inappropriate. However, autism awareness is not the only answer, at best, it is a starting point. 71/

The coroner moves on to discuss Zoe's twitter account and the digital records of her thoughts. He reads some tweets from the days leading up to her death. He discusses how Zoe did not publish her exact suicidal intentions on twitter but comments that if she had done, it would 72/

be likely that her empathetic friends on twitter would have certainly made efforts to help her. It's likely this is why she did not do this.

He moves on and again points to the importance of understanding autism and trauma. He states that the root causes from the serious 73/

incident review (SIR) were accepted and part of the record. 74/

The coroner states that the EUPD in Zoe's notes "represented the wrongdoing of TEWV". By the time the label was removed, Zoe's trust in services was damaged beyond a level that could be repaired. The coroner states "this was a trauma as real as any physical one".

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He discusses Zoe's autism not being understood. Zoe had a processing delay, if this was not accommodated she would go quiet while being talked to and would stop responding. Staff struggled to understand this and saw Zoe as unhelpful and non engaging. 76/

Staff expected Zoe to change in order to access care from their team.

There are no specialist autism services provided by TEWV in Zoe's area (north Yorkshire). The Tuke Centre in York do not provide crisis care. The ending of her appointments with the Tuke Centre due to 77/

COVID contributed to Zoe's risk. The lack of autism specific care negatively impacted on Zoe, as did the delay in allowing Zoe access to her notes and addressing the EUPD in her notes. Even if Zoe had been able to engage following the removal of EUPD, she would have remained 78/

high risk, given the trauma she experienced. She would have needed a lot of time to be able to work through this and rebuild trust. Zoe felt unfairly judged and mistreated, this deeply affected her sense of self and wellbeing. There is already a high risk of suicide in 79/

Autistic people, particularly autistic females.

Zoe was a bright individual. She was failed to be understood. She was failed to be cared for. She could take no more of the cycle of harm and the torments she went through. The trauma of this caused her to take her own life. 80/

Zoe did not receive proper care. There was a reliance on an unsubstantiated diagnosis of EUPD by services. The coroner describes Zoe's death.

Formal conclusion: "Zoe died by suicide contributed to by actions and inactions of mental health clinicians entrusted to keep her 81/

safe in a care system which was underdeveloped to manage an autistic individual with complex needs."

Article 2 was engaged and it was found that the positive duty and the operational duty to protect Zoe's life and provide her with adequate care were breached.

The coroner 82/

now describes the regulation 28 report he will be sending to the secretary of state, the minister for mental health, the North Yorkshire CCG, & NHS England.

(I will not attempt to condense the regulation 28 report here as I won't do it justice, rather, once it is published 83/

online I will post a link here)

The coroner states he will be writing to TEWV to express concern that data about autistic patients needs to be collected & analysed. Also, he will recommend that all autistic patients attributed a label of EUPD should be reviewed & reassessed. 84/

(I ask Jean's counsel if they could request the coroner recommend to the press that they not publish the specific details of Zoe's suicide method. I state that due to the vulnerability of many of Zoe's friends and the high public interest in this case, it would be sensible to 85/

follow Samaritans guidelines.)

Jean's barrister addresses the coroner who agrees and asks the press to withhold publishing these specific details.

The coroner expresses thanks to the court and particularly to Jean. He states he cannot even begin to imagine how this has been 86/

for her. He offers his deepest condolences to Zoe's family and friends.

The inquest ends.

I immediately burst into tears in the court and Jean comes and gives me a hug. Jean is truly a wonderful wonderful person.

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As the court is leaving, I approach the coroner & give him my thanks for his findings. He states "we must find meaning in these things".

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#JusticeForZoe

I miss you Zoe. I hope I have properly honoured your memory with this inquest summary. I hope you have found peace ❤️🌈