Thread by @Shame_On_TEWV

CW: Suicide

Zoe's inquest. Day one.

We're at the Northallerton coroner's court. Assistant coroner John Broadbridge (JB) is leading the inquest.

Proceedings began at 10am. Discussed pre inquest review hearings and the evidence submitted to the court.

#JusticeForZoe

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Inquests are a fact finding forum. No blame, no determination of criminal responsibility. A discussion of who, how, when, and where, and the important facts surrounding those.

The inquest is for Zoe Emma Zaremba, born 7/1/95 in Northallerton to Jean and John Zaremba.

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Zoe died 21st June in Bedale, North Yorkshire.

Coroner (JB) states that this case is broader than a statement of means, as Article 2 is engaged, there will be a more in-depth investigation. JB states that there were breaches of the state to provide a proper framework to

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protect Zoe's life. There was a positive duty breach. There was a possible breach of the operational duty - steps were not taken to protect life.

The court will examine Zoe's state of mind, and whether she had the capacity to make decisions, and her intent behind her actions.
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The first day will involve evidence from Jean Zaremba (Zoe's mum) and Dr Kuster (Zoe's psychiatrist from TEWV.) Day two will include other medical professionals. Day three will include representatives from TEWV, and examination of the serious incident review and investigation 5/

conducted following Zoe's death.

Long discussions between solicitor and coroner regarding paperwork and evidence which was submitted late.

We move on to the medical cause of death and readings from the autopsy findings. I will not be publishing these on twitter due to the 6/

sensitive nature of the topic.

Jean is called to give evidence and begins with a statement to the court about Zoe. She describes Zoe as an amazing, intelligent person with a dry sense of humour. She loved gymnastics, and being out in nature. She was very close to her Mum. 7/

Zoe was diagnosed as autistic at 16 years old, despite clear signs of autism from a younger age. Jean describes how Zoe's journey through mental health services, which involved being labelled with BPD and treated under TEWVs "BPD+" protocol, had given Zoe complex PTSD. Her 8/

autism was never understood or supported, rather she was sent round in circles, slandered in her notes, lied to and about, and generally mistreated by staff. Jean comments that Zoe stated "I cannot live in a world full of lies". She then says she will never recover from losing 9/

Zoe and describes her death as a waste of a wonderful life.

Court is coming back from lunch. This thread will continue later today.

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Continued

#JusticeForZoe

Jean is now questioned about Zoe's past history. She was bullied at primary & secondary school. She moved school to avoid this but the bullying continued at the new school. Zoe was intelligent and capable but had little confidence or self-esteem.

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Due to potentially experiencing depression (not recognised at the time, but considered with hindsight) Zoe stopped attending school and was referred to CAMHS when she was 13. The staff felt she had "autistic tendancies" but didn't assess for autism. Zoe did her own

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investigation surrounding autism, including online screenings, and felt it was something she identified with from 12/13 years old. Jean described Zoe's social difficulties, and her struggles with coping with a neurotypical world. She was very anxious, ruminated, became

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socially exhausted easily, socially isolated, experienced alexithymia, and heavily masked in social situations. The coroner asked "did she feel different?" Jean replied yes. The coroner asked, "did she feel special?" Jean replied no. Jean outlined that words mattered hugely

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to Zoe. "Truth and honesty" were the most important things to her.

Zoe completed school and took night classes to train as an accountant. In 2014 she started at a firm as an assistant. She planned to continue with her training. In 2015/2016 Zoe began struggling at work, and 15/

started having panic attacks. She disclosed to her employer that she was autistic. This wasn't taken well and Zoe felt they were attempting to push her out due to her autism. She requested reasonable adjustments, and as the coroner stated, they were "fairly modest requests"

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but they weren't given. Zoe pursued employment tribunal proceedings. The tribunal was distressing for Zoe and "took it out of her". Jean describes the stress of the tribunal as a trigger for Zoe's subsequent struggles. In February 2016 Zoe took an overdose due to the stress 17/

of work and fearing the loss of her job.

Zoe eventually left and between 2016 and 2018 she was employed in different jobs, but her struggles worsened and in October 2018 she left work entirely. She didn't work after that but kept up her CPD.

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In 2016, following Zoe's first admission to a TEWV hospital she discovered on her notes that she had been diagnosed with an adjustment disorder. She did not initially agree with this, and was upset that it had not been discussed with her.
It's unclear when, but at some point

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Zoe requested her notes from TEWV and was horrified at what she discovered. She found out that she had been labelled with EUPD without assessment & was being treated under the BPD+ protocol.

In September 2018 Zoe was assessed by a psychologist at the Trust who specialised 20/

in personality disorder. The psychologist decided that Zoe did not fulfill the criteria for a diagnosis of EUPD and did not have a personality disorder. Despite this, the diagnosis continued to stay on her notes.

At the beginning of 2019, Zoe opened a twitter account.

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Jean described that Zoe opened the account in response to the lies being told about her by services. In this way, Zoe would have her own platform so that she could express herself and describe her experiences from her own perspective. Jean commented "truth and honesty were so 22/

important to her she couldn't understand what was written in her notes". The coroner asks Jean if Zoe was aware that the TEWV communication department was monitoring her account. Jean said yes, Zoe was aware of this. Jean explained that Zoe was shocked to find so many others 23/

online who shared her experiences, even people treated under the same teams and the same staff members.

The coroner moves on to ask Jean about Zoe's suicide attempts and self-harm. He states that between Feb 2016 - May 2020 Zoe was in A&E 37 times. He asked Jean how many of 24/

Zoe's suicide attempts were real attempts. He asked, were these real attempts or cries for help? Jean states that initially she believes these were cries for help, but over time, the intent clearly became death. Jean states that Zoe didn't actually want to die, but death

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became her only option as she could see no way forward. The BPD label was on all her mental health/physical health care notes, police records, and social services records. She felt trapped. Jean describes this with clear emotion and the coroner asks her to stay on subject.

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They go back to discussing Zoe's suicidal intent. Jean states that from January 2020 onwards it was "becoming clear how it would end*. She said from March/April, Zoe "had done so much damage to her body it could have given up on her at any time". Jean then discusses Zoe 27/

organising an advanced directive, so that she would not be resuscitated after a suicide attempt. The coroner asks "she wanted to be allowed to die?", Jean says yes. While Zoe wanted independence, employment, and a family/children, Jean says "she got so worn down she felt it 28/

was beyond her".

They discuss the physical damage done by the overdoses. Zoe had long term vision and renal damage. They discuss some more graphic details of Zoe's self-harm and suicide attempts, including methods.
Zoe had indicated that she would have liked to die at home. 29/

Jean says that she couldn't let that happen, because she would always seek help for her. Due to this, Zoe made a number of attempts outside of the house and was found by police and taken to A&E.

The coroner asked how frequently this happened. Jean replied, "often".

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They discuss the day Zoe went missing. The night of June 13th 2020. Jean states that it was an ordinary day, nothing untoward happened. She described Zoe telling her that she would have a lie in the next morning and asked her Mum not to wake her. Before heading to bed Zoe 31/

hugged her Mum and said "I love you". Jean commented that this was slightly unusual. Zoe left the house at some point that night. The next day, Jean went to wake Zoe at lunchtime and discovered her gone. Due to certain items which were left in Zoe's room, Jean knew what had 32/

happened. She said she thought to herself "she's not coming home".

Zoe was reported missing and the police began a search. Zoe's body was found on June 21st, 1.5 miles away in a rural area. The area was described as not well walked, and that not many people would have been 33/

aware of the path leading to it. She did not leave a note.

The coroner now moves to Zoe's tweets. The serious incident review which took place following Zoe's death included a number of her tweets. The coroner read out some of these tweets and asked Jean about them.

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He read out the tweet from May 2020 where Zoe described how her mental health notes had finally been annotated to reflect that she didn't have EUPD and that this diagnosis should no longer be used. He asks Jean if Zoe felt positive following this. Jean replies that while she 35/

was a little more upbeat, she still couldn't comprehend how it had happened in the first place & why it had taken 19 months to sort out.
The coroner asks "was she obsessed with the notion that these things should have been done?" He asks this several times. "Was she obsessed?"36/

Jean did not say yes, rather she repeated "Zoe could not get her head round it" several times. Eventually the coroner stops asking if she was obsessed, and comments that Jean obviously doesn't want to use that term. 37/

Jean says the BPD label "upset Zoe deeply, it had turned her into someone she wasn't [..] early on she asked for openness, honesty, and to be included in her care, but that didn't happen."

More tweets are read out. It's strange to hear Zoe's words here in this court.

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The coroner asks was Zoe "unable to accept the attribution of her problems to EUPD". Jean described how Zoe didn't have EUPD and was unable to accept it "because the way people treat you when you have a personality disorder diagnosis is appalling."

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The coroner discusses more tweets and comments about Zoe's "continued brooding" over "perceived wrongs against her". It was hard to hear this. The coroner clearly could not comprehend Zoe's situation.

This was a running thread throughout many questions.

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The questions now turn to Zoe's care under the Tuke Centre in York. She had received funding from the CCG for a limited number of appointments with them. Jean described how they assessed and diagnosed her with C-PTSD. She said that TEWV never assessed her for this.

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The coroner asks whether Zoe accepted she had a mental health condition. "Did she ever accept that she had a mental health disorder?" Jean replies, yes. She identified with the C-PTSD diagnosis. The coroner asks about autism. "Do you attribute any of her behaviours and 42/

thoughts to her autism?". Jean replies "the autism *was* her." Jean describes how Zoe experienced bullying as a child, her Dad left when she was 4, then she went through the employment tribunal, and endured years of TEWV "care". She explains that this caused PTSD. TEWV 43/

diagnosed an adjustment disorder instead, but she commented, either way, they still didn't provide her with support for this.
The coroner asks Jeans solicitor & TEWVs solicitor if they have questions for Jean. TEWV have no questions. Jeans solicitor has a number of questions. 44/

Jeans solicitor starts by talking about the impact of the EUPD diagnosis on Zoe. She states there were a number of factors - the way the diagnosis came about; the way it was communicated to Zoe; the impact on her care; how it was recorded in her notes; and the length of time 45/

it took to remove. She asks Jean about the potential detrimental impact on Zoe's mental health and how it affected her ability to engage.

Jean says "Zoe asked straight forward direct questions and didn't get answers". She said Zoe did everything she could to engage, but "it 46/

fell on deaf ears". Zoe lost trust in TEWV once it became apparent how much they had lied to her. She subsequently refused to work with anyone from the North Yorkshire services, and moved to the Darlington/Durham team. Jean mentioned that the Northallerton team, particularly 47/

the crisis team, were using the BPD+ protocol. This resulted in specific incidents of terrible care. Jean recounts an experience Zoe had in 2018 where she took steps to end her life, & was detained on a section 2. The Northallerton crisis team manager had her discharged from 48/

the section 2 after 16 hours. She was almost immediately detained under section 136 by the police and later that day was placed on a section 3. She was discharged 3 days later.

Zoe could not work with this team any more 49/

and refused all community team input. This extended across all localities, but she agreed to engage with the Darlington/Durham crisis team. The solicitor now presents Jean with a timeline of events from May 2020 up until Zoe's death.

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20th May 2020 - Zoe was discharged from hospital. The discharge plan stipulated that Zoe would receive follow up calls from Dr Kuster, her inpatient psychiatrist. No community support in place as refused by Zoe. Zoe's discharge risk assessment records her risk as low.

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21st May - Zoe reads discharge letter and discovers certain inaccuracies. This was distressing. The ward was contacted and this was corrected and a new letter issued.

22nd May - Zoe attends A&E after a suspected overdose. She assured clinicians she was not at immediate risk 52/

and wanted to go home. Discharged from A&E.

23rd May - Addendum to Zoe's notes now indicates that she no longer has EUPD diagnosis and it shouldn't be used.

27th May - Dr Kuster phone call to Zoe. Dr Kuster didn't read notes before call. He was unaware of recent overdose.

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1st June - Crisis team are alerted by TEWV Comms team to concerning tweets from Zoe. They ring to do a welfare check.

10th June - Planned phone call from Dr Kuster doesn't happen. Zoe waits all day for call. No contact from TEWV to explain or reschedule.

No further contact.
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This concludes Jean's evidence. The coroner thanks Jean and says "You have been exceptionally strong.. We are grateful to you".

The court breaks for lunch. Upon return we will hear from Dr Kuster, Zoe's inpatient psychiatrist.

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Dr Kuster was not "assigned" to Zoe, rather he was her responsible clinician at West Park hospital on her numerous admissions between 2019 - 2020. As Zoe did not have a care coordinator, point of contact, or a community psychiatrist, Dr Kuster became Zoe's informal care lead.
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The coroner asks about Dr Kuster's experience of autism. He describes how he has "come across a lot of people with autism" and there are an increased number of people in adult services who are autistic.

The coroner asked Dr Kuster about Zoe not having a care coordinator 57/

despite being under a care programme approach (CPA). Dr Kuster stated that Zoe refused to have one. When her care was transferred from North Yorkshire to Darlington/Durham (due to the trauma she had experienced from the North Yorkshire team) she refused to work with the 58/

community team. The coroner asked about what care Zoe was actually getting, and about her lack of a care plan.

Dr Kuster explained that Zoe did not have an overarching care plan, but that on each admission she would be reassessed and a new intervention plan was written.

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The coroner asked if this meant that Zoe just moved from admission to admission each with a new intervention plan. Dr Kuster stated that the intervention plans were basically the same as care plans. But there was no community team to actually provide the intervention.

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Dr Kuster described how they were attempting to reduce admission length. He stated that "longer admissions would have been against the absolute will of Zoe". He explained that she usually settled very fast on the ward and engaged well with staff and became ready for discharge 61/

soon after. He explained that "long term admission would have destroyed the therapeutic relationship with Zoe". He didn't want to keep her against her will, rather, he wanted the hospital to be a safe space to help rebuild her trust with services. He also stated that legally 62/

they were unable to justify detention under the MHA as they did not satisfy the appropriate care test.

The coroner talks about Zoe's admissions. Someone coughed over him, so it was hard to hear, but it sounded like he stated that Zoe had 16 admissions between 2016-2020.

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He said that admissions tended to be short (3/4/5 days) but some were up to a few weeks. Early on the admissions were voluntary, but as time went on they were frequently under the MHA.

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The coroner stated that there was no effective care plan. He said "the cycle of self-harm, admission, rapid discharge, back to community with no care plan and no engagement... Where is plan B?" Dr Kuster responded that he had tried all sorts of plans. He said he hoped the 65/

EUPD record change would help Zoe engage. "The main approach was to hopefully be able to establish trust with Zoe and use this as a seed to help her engage with a second professional", either a psychologist or a social worker. Zoe requested a social worker who has training in 66/

autism. There were none with this training, so he said she refused a social worker.

The coroner then attempted to wrap his head around EUPD/BPD and the diagnostic process. Dr Kuster gave a cursory overview of EUPD, including the diagnostic criteria, and the differences 67/

between the DSM/ICD. The coroner asked "what was it that might be attributable to EUPD in her behaviours?". Dr Kuster replied, "emotional instability". Dr Kuster went on to describe treatments for EUPD, including DBT and structured clinical management. They moved on to the 68/

BPD+ protocol and how it had covered a wide range of diagnoses, not just BPD. Dr Kuster explained that the concept of balancing short term Vs long term risk was known as positive risk taking. He said this type of management was "very well established in the Trust and has 69/

survived the protocol and been used in the new harm minimisation policy". He explained that taking short term risks could lead to long term recovery. The coroner asked if Zoe connected the protocol to the diagnosis of EUPD. Dr Kuster said yes, and said when discussing 70/

positive risk taking with Zoe he deliberately withheld mention of the protocol so as to avoid her being upset. The coroner then asked about the diagnosis of adjustment disorder which Zoe was given by Dr Kuster in 2016. Dr Kuster described how he did not tell Zoe about this 71/

diagnosis, but she became upset when she saw it on her discharge summary. He said that the diagnosis was regiven in 2018 by another staff member, and then when he saw Zoe again in 2019, Zoe was happy with the diagnosis of adjustment disorder. 72/

The coroner asked about the treatment for adjustment disorder and Dr Kuster said that it was talking therapy. The coroner asked about treatment for autism. Dr Kuster said it was a "symptomatic treatment" only, where particular presenting issues are supported. The coroner then 73/

asked why Zoe was on medication if not indicated. He said between 2016-2020 she was on sertraline, temazepam, diazepam, and fluoxetine. Dr Kuster stated this was for depression and anxiety.

They moved to risk assessments. The coroner said it was clear to everyone that high 74/

risk behaviours were present. Dr Kuster agreed. The coroner then stated that on Zoe's final discharge, the safety summary tool assessed her risk as "low". Dr Kuster said this was because the assessment was specifically recording her risk upon discharge. They assessed her 75/

immediate risk as low, while her long term risk remained very high. This was not reflected in the risk assessment.

Dr Kuster commented that because Zoe refused to see the community team, ongoing assessment was limited.

The coroner asked Dr Kuster to describe Zoe's static 76/

risk factors. He kept saying that as a young female she would be considered lower risk than an older man. He asked Dr Kuster that due to this, was Zoe's presentation unusual? Dr Kuster said that all staff would have understood that she was at high risk of suicide & accidental 77/

death. They listed static risk factors: 1. Unresolved situation regarding EUPD in notes. 2. Fixed belief that life wasn't meaningful due to the label. 3. Loss of hope. 4. Previous suicide attempts. 5. Unemployment. 6. Breakdown in therapeutic relationships.

Dr Kuster 78/

explained that despite clear trauma, particularly from Zoe's experiences in the ITU, he did not want to give her a formal diagnosis of PTSD because he felt it wouldn't be helpful to her. He didn't feel it would add up to anything, and despite Zoe stating she felt she had PTSD 79/

Dr Kuster suggested that Zoe might be upset about being diagnosed with PTSD.

The coroner asked if Zoe's autism was the reason she was traumatised. Dr Kuster stated that ASD can trigger social rejection and negative behaviours from others, which is traumatic. He went on to 80/

say that autistic people are less able to cope with this trauma and are at a higher risk of being affected by it.

The coroner asked "did Zoe want to get better?" Dr Kuster said, yes, he believed she wanted to get better. He said she had clear positive plans for the future.

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They discussed Zoe's refusal to engage. The coroner asked if Zoe was aware that her non-engagement made it difficult/impossible to provide proper care. Dr Kuster said that Zoe would not have framed it that way. He said Zoe would have said that it wasn't her responsibility and 82/

that she would have seen this discussion as a shifting of the Trust's responsibility to herself. Dr Kuster said that Zoe would have seen her non engagement as a logical consequence of harm from services.

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The coroner then asked Dr Kuster about Zoe's advanced directive. Dr Kuster discussed his consideration of whether she had capacity to make this decision. He questioned her ability to weigh up information, eventually deciding she did. He said this was the first time he had 84/

dealt with a situation like this. The coroner asked about how autism would affect her decision making, Dr Kuster replied "Zoe's autism was Zoe". The coroner indicated that he thought a person could be separated from autism. He asked if harbouring strong feelings due to autism 85/

had contributed to her death.
Dr Kuster agreed and also said "failures to address concerns contributed to her death. If we had addressed them earlier her risk would have been much lower".
The coroner's questions ended, and Jean's solicitor began her questioning. She asked 86/

what specific training Dr Kuster had in autism. He described training courses, including the new trustwide training which had been implemented since Zoe's death. At the time of treating Zoe he had "level 2 ASD training", which was a one day online course with the ASD team. 87/

The solicitor asked what framework was used to care for Zoe, in regards to how her autism was considered. Dr Kuster stated that the ward had a good record of reasonable adjustments for Zoe, but that this did not always happen across other services. The solicitor asked 88/

Dr Kuster why Zoe was always treated on Elm Ward, which is an acute ward. Dr Kuster stated that Zoe was offered multiple lines of treatment, which also included the care team receiving advisory support from the autism team. The solicitor made a point of noting that this 89/

refusal to engage was consistently due to a loss of trust in services.

Dr Kuster described a number of conversations about specific conversations he had with Zoe where she refused care. The solicitor pointed out that absolutely none of these conversations had been recorded 90/

in Zoe's notes. Dr Kuster agreed they should have been. Dr Kuster stated that when Zoe was receiving support from the Tuke Centre, she refused to allow staff from there to meet with TEWV staff, so they couldn't liaise. The solicitor read out emails from the Tuke Centre which 91/

described how any meetings which Tuke staff attended with TEWV would have counted as one of Zoe's appointments. As the appointments were CCG funded, she had very limited appointments and didn't want to waste any.
The solicitor read out a number of letters and emails between 92/

different services which had not made their way to Dr Kuster, or been properly recorded. There was poor communication between TEWV staff and within departments.

On May 5th 2020 a professionals meeting took place to discuss Zoe. It included an ITU consultant, an AMHP, the 93/

117 aftercare team, a nurse practitioner, and Dr Kuster. Notes were taken during the meeting which were written up and sent to Dr Kuster on 11th May. Dr Kuster read and sent them back on 18th May. The notes were not uploaded to Zoe's notes, nor was any mention of the meeting. 94/

In the meeting, they discussed the advanced directive, and decided that they should pursue assertive outreach for Zoe. However, there is no assertive outreach team in Darlington/Durham, so they suggested merely suggesting again that Zoe see the community team, and they use an 95/

assertive approach. It was for Dr Kuster to take this to Zoe. The solicitor asked when Dr Kuster planned on getting in touch, and he said "I knew I would see her at some point". He next saw her on her next admission mid May. He said she refused the assertive outreach approach 96/

but again, this wasn't documented.

Dr Kuster reflected on his informal role as Zoe's care coordinator. He said that in hindsight it wasn't feasible and he shouldn't have offered it. He said he shouldn't have offered the phone calls, and in particular, the last phone call 97/

which he missed, he said he has thought about it every day since Zoe died. He said it could have been a contributing factor in her death.

Dr Kuster stated that with hindsight he feels the most important thing they could have done for Zoe was provide a single point of 98/

contact - someone to oversee her care. He said he could have organised that, but didn't.

The solicitor asked if he accepted the findings of the serious incident review. He said he did. The SIR found three root causes to Zoe's lack of engagement. 99/

1. EUPD diagnosis and notes. 2. Limited ASD understanding. 3. Autism.

The solicitor asked Dr Kuster if it was true that someone should not be diagnosed with BPD without their autism first being considered as the cause of the difficulties. Dr Kuster agreed. He said Zoe 100/

displayed some symptoms of EUPD, but this didn't constitute a diagnosis. A specialist PD psychologist assessed Zoe in 2018 and said she didn't have EUPD, but it wasn't resolved. The unresolved EUPD issue was a significant precipitating factor in Zoe's death.

Dr Kuster said 101/

that he hoped the addendum added in May 2020 would resolve things. The solicitor suggested that surely Zoe would have needed a long time to regain trust in services. Dr Kuster agreed.

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Tomorrow Dr Kuster will be back and questioned by the TEWV representative. Two other clinicians will give evidence - Zoe's GP and a clinical psychologist.

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End of Day One.

Be gentle with yourselves, mute this account if needed. In solidarity ✊ ❤️💜❤️

#JusticeForZoe