Thread by @Shame_On_TEWV

CW: Suicide

Zoe's inquest. Day three.

#JusticeForZoe

The day begins with questions posed to Mr Philip Robertson, who conducted the independent review into Zoe's care. The coroner asks Mr Robertson to describe his role and qualifications. Mr Robertson indicates that he has 1/

been a mental health nurse for 42 years - 32 years within the NHS and 10 in independent work. The coroner asks him in what way is the report "independent". Mr Robertson explains that he is not employed by the NHS, has no staff involvement, and has no stake in the outcome of 2/

the report. He explains that the report was commissioned by TEWV, but he is not a TEWV employee. They discuss the duty of candour and the importance of Trusts being open and honest when things go wrong.

Mr Robertson explains that in producing the report he met with Zoe's 3/

family and listened to their concerns and thoughts. He used this information to inform the structure of the report. He gathered further information from Zoe's mental health and GP notes; interviewed staff; accessed hospital sites; accessed Zoe's twitter account; gathered 4/

reports from Jean Zaremba, the Tuke Centre, and social care services; accessed TEWVs incident reports; information governance dept. information; and accessed Zoe's complaints and subject access requests.

He further explains that the purpose of the review is to investigate 5/

what happened and what lessons can be learned. It is not to apportion blame, rather, it is learning focused.

The coroner asks him if these types of independent reviews are unusual. Mr Robertson indicates that they are not rare but also not particularly common. He 6/

conducts 4/5 per year across the north of England. The coroner asks how many of these have been in regards to an autistic person? He says 2 in 10 years.

The coroner moves on to discussing autism services across the country and his experience of this. While Mr Robertson 7/

cannot say how many trusts have specialist services for autism, he states that "sensitivity of autism across organisations is very underdeveloped". The coroner asks about Mr Robertson's professional experience with autism treatment, and Mr Robertson responds that "Autism is 8/

not a problem to be fixed" but that he is not an expert, rather he has a general level of understanding. The coroner asks about TEWVs autism services and whether they are underdeveloped. He replies, yes, it's a local and national problem.

They move on to discuss Zoe and the 9/

Care Programme Approach. The coroner asks Mr Robertson to explain exactly what it is. He explains that it is a national framework which supports people with complex needs. Central to this is the care coordinator who assesses, plans, and coordinates care. He describes it as a 10/

cycle of planning and assessing. Within this is the written care plan. The coroner asks if the patient should be involved in preparing a care plan. Mr Robertson says "very much so". The coroner asks about the care coordinator and what type of professional could be one, he 11/

asks if a non clinical professional, such as a social worker could be a care coordinator. Mr Robertson says yes. They discuss the background to CPA further. The coroner asks Mr Robertson whether during his investigation, he came across a care plan for Zoe. Mr Robertson states 12/

that he had found "aspects of care planning" but no active care plan. He says it was complicated by Zoe's refusal to accept a care coordinator. The coroner asks how long was Zoe without an active care plan? He replies, from 2018 roughly. The coroner repeats that back, so 13/

18 months to 2 years with no active care plan? Mr Robertson again replies, yes, this was complicated by Zoe's disengagement. The coroner stops him and says he is not interested in why, he is merely asking whether Zoe was without an active care plan & care coordinator. 14/

Mr Robertson again says yes, but again explains it was limited by Zoe's disengagement, and that she may on some occasions have people "standing in" in the role informally. The coroner discusses something Mr Robertson noted in his report, that an absence of fidelity of the 15/

care coordinator role had a detrimental impact on Zoe. He asks Mr Robertson, what do you mean by fidelity? Mr Robertson explains that there was a lack of consistency. 16/

The coroner sums up, so there is no clear evidence of a current care plan and no consistent care coordinator, but individuals from time to time tried to fill that role? Mr Robertson agrees. 17/

The coroner says, Dr Kuster tried to take up the care coordinator role to some extent, but wasn't able. Were there others? Mr Robertson replies, yes, from the community team. They discuss TEWV staff and staff from Tuke Centre being aware that this lack of care coordination 18/

was a problem. Tuke Centre staff requested at one point that TEWV appoint one. The coroner asks how the absence of an effective care plan and care coordinator would have impacted Zoe's care. Mr Robertson explains that it would have left it uncoordinated, reactive rather than 19/

proactive. He explained that in relation to moving forward and supporting Zoe through the recovery process, this would have been challenging. The coroner says no-one was answerable to Zoe's care. The reactive response was ad-hoc and relied on Zoe being accepting of inpatient 20/

clinicians. Mr Robertson says this would have had a detrimental effect. He explains the "softer side" of care - compassion, empathy, and building a therapeutic relationship - are extremely important to recovery. A lack of care coordinator diminishes this as it can't be built 21/

into the recovery programme.

The coroner says, I asked Dr Kuster "what was plan B?" As far as I can tell, there was no plan B. It's entirely reactive. Is this your experience too? Mr Robertson replies, yes, but that he recognised the challenges present. He said Dr Kuster is 22/

an individual who took a pragmatic approach which was compassionate and person centred, and began building trust. The coroner asks, "so, layers of support, but not coordinated?" Mr Robertson agrees. The coroner asks what person centred means. Mr Robertson explains that it 23/

means looking behind the label to see the person. It's about respect, about seeing them as an individual and respecting that. The coroner refers this back to autism. He says, autism and Zoe were integral with each other, it was her identity. Autism was Zoe. You've said autism 24/

is not a problem to be fixed, so if someone is autistic, you have to address it, not pigeon hole it. You have to understand it's part of the person, do you agree? Mr Robertson says "absolutely" care needs to focus on a person's needs, in Zoe's case, her mental health & autism.25/

The coroner asks Mr Robertson what research he read to understand autism better when he was conducting the investigation. Mr Robertson explains that he read the report from the Tuke Centre, and conducted his own personal research. He explained that this allowed him to 26/

identify Zoe's presentation of autistic characteristics throughout the significant amount of notes he had gathered for the report. The coroner comments that the Tuke Centre's report stated the erroneous attribution of EUPD was significant. It also said autism was different in 27/

males Vs females. Were you aware of this? Mr Robertson replies yes. The coroner says, Dr Oswald said yesterday that females can mask better but this comes at a cost and can be exhausting. She also said males are diagnosed earlier in general. Have you found this? Mr Robertson 28/

says yes. The coroner mentions person centred care, and asks "should there be a distinction between genders? One size fits all isn't preferable?" Mr Robertson says yes, that applies to all people, not just autistic people. The coroner says, Zoe's case was typical ASD 29/

presentation according to Dr Oswald, did this come out in your investigation? Mr Robertson says yes and explains that staff appear to have frequently misinterpreted Zoe as manipulative/challenging/difficult. The coroner said, Dr Oswald said Zoe could appear obstructive but 30/

this wasn't the case, just that Zoe's body language/behaviour/speech/feelings didn't match up like a neurotypical person. The coroner asks, so TEWV have an ASD team but they don't provide wrap around care? Mr Robertson explains that it comes down to commissioning arrangements 31/

in North Yorkshire. Autistic people in North Yorkshire are referred to the Tuke Centre. The coroner says, I'm trying to understand, you have a drive for person centred care & yet you pigeon hole autism care out to another organisation who are not on the same computer system, 32/

and have no communication with mental health services. How is this person centred? Mr Robertson replies, each service should be communicating with the GP. The coroner comments Zoe got on with her GP because she was sensitively accommodated. He then starts to talk about 33/

communication difficulties within and between NHS systems. He says Paris and System One aren't linked. You would have expected the teams to communicate but they worked in isolation, which is far from person centred. Mr Robertson agreed, and discussed the issues around sharing 34/

information and confidentiality. Ultimately, he said, sharing information should come down to a "common sense approach". 35/

The coroner looks at the recommendations from Mr Robertson's report, and begins discussing the need for autism specific services within TEWV. Within Zoe's locality there are no specific services, so help is limited. He asks Mr Robertson about the commissioning of services, 36/

he responds that this falls outside of his terms of reference. The coroner asks him, if you had a wish, what would it be? Mr Robertson replies that reducing these separate services, or "silos", would be good. They move back to the recommendations and talk about TEWV 37/

developing a higher level of understanding and ability to support ASD. They talk about the "complex case plan" system which exists within TEWV to support second opinions. Mr Robertson recommends it be reviewed as it isn't consistent across the trust. The coroner stops & says 38/

Zoe's autism was her. Surely the first opinion should have been to address autism before thinking about mental health care - one of the first steps should be to assess and establish sensory needs before or simultaneous to mental health care. They look at Mr Robertson's other 39/

recommendations, including autism training for staff and the coroner says, these recommendations could have gone further to suggest an assessment *immediately* of ASD and a sensory assessment for autistic people and people displaying autistic traits, so that staff have an 40/

understanding of the person in front of them. The principle I am trying to establish is if autism is so inexplicably bound up with the person, it is not enough to just treat mental health, the autism must be understood so the proper diagnosis and treatment can be engaged. 41/

A combined effort in understanding the autism and how that affects the whole person. Mr Robertson replies, yes, you're describing holistic care. He says, there's not a quick fix, it is a complex strategy. The coroner says, I won't say any more. I have made my point.

42/

(Practically burst into tears at this sudden and unexpected change in direction in the understanding of autism. We stopped here for a break and many of us commented to one another that this had been a good end to the morning session.) 43/

Returning from the break and discussions are had about autism and suicide risk. Recent studies are cited which mention that autistic women and girls are at the highest risk of suicide and a huge proportion of suicides nationwide are autistic people. Then we move to the EUPD 44/

label, and the "alleged malice" behind the diagnosis. The coroner asks Mr Robertson if any of Zoe's behaviours could actually be attributed to EUPD. Mr Robertson says this is not his area, and he can't really comment, but that ASD and BPD overlap in terms of 45/

behaviours/difficulties and that there is often a misattribution of ASD traits to EUPD. The coroner says Zoe showed clear signs of PTSD and listed childhood bullying, the employment tribunal and the EUPD label as traumas. He said Dr Oswald had explained that trauma is 46/

different in autistic people, that seemingly minor or less harmful things can be very traumatic. Dr Oswald also said that autistic people's memories are often extremely vivid, and Zoe had an exceptional memory, which meant she relived her trauma in great detail. The coroner 47/

moves on to ask Mr Robertson about the EUPD label on Zoe's notes. He says Zoe requested it be removed many times. Mr Robertson replies, yes, there were repeated attempts over a protracted period. The coroner asks, was there a clinical reason why this did not happen? Mr 48/

Robertson explains that medical records are a "photograph in time" which form a historic record, so they can't be expunged. He says that Dr Kuster eventually resolved this, and that the length of time it took was a central issue to Zoe disengaging from services.

The coroner 49/

states, it took 18/19 months to be resolved. Notes, as I understand, can't be removed, but an annotation was added 19 months later - all that while Zoe was "lurching from crisis to crisis". Mr Robertson replies, yes, it added to her distress. The coroner says, Zoe found out 50/

about the EUPD label by accident, from staff on a ward? Yes, replies Mr Robertson, I could not find any evidence that a formal assessment had taken place. The diagnosis wasn't discussed with her. The coroner asks, was there any explanation for the delay in annotations? 51/

Mr Robertson replies it was not perceived by clinical staff or the info governance team as a priority. The coroner asks why it took so long for staff to realise the diagnosis had no foundation & the addendum be added? Mr Robertson said he cant find any explanation for that. 52/

They look at Zoe's mental health before and after she discovered the EUPD diagnosis. Between 2018-2020 Zoe had 25 A&E visits and 12 admissions, including 3 informal and 9 under the mental health act (s.2 & s.3) over an 18 month period, which was a dramatic increase. 53/

Mr Robertson says there was a significant correlation between the distress caused by the EUPD label and an increase in admissions and self-harm. They discuss Zoe's non engagement with services. Mr Robertson concludes that Zoe refused to engage due to the distress caused 54/

by the EUPD diagnosis, the limited understanding of autism in services, the lack of reasonable adjustments provided, Zoe's inability to access autism specific services, and her autism. The coroner asks, how does autism cause non-engagement? Mr Robertson replies, I feel it is 55/

a combination of restrictive behaviour, extreme anxiety, and rigid thinking. Over time that led to a breakdown of trust in services. The coroner states that TEWV were not meeting her autistic needs. There is a need to take into account the Equality Act and consider that 56/

reasonable adjustments were not forthcoming except for in later care on Elm Ward, despite Zoe's requests. In 2016 Zoe presented a list of reasonable adjustments to the crisis team and at this time they were accepted. Following this however, they appear to be lost from her 57/

care. Mr Robertson says, the key word is that they were "reasonable". The coroner replies that what may appear to be irritations and small steps could make a big difference to Zoe.

The move to risk. The coroner explains that a typical mental state exam may have been more 58/

difficult with Zoe given her body language did not display her feelings. He says Zoe was very high risk and despite poor risk assessment tools, all clinicians will have been aware of her risk. The coroner asks, was there anything to suggest after Zoe was discharged (from 59/

hospital in May 2020) her risk increased? Mr Robertson says he is unsure, but the Tuke Centre expressed concern & Zoe's tweets at this time were concerning. There was nothing documented though. The coroner asks, was there anything to suggest that Zoe's suicide was imminent? 60/

Mr Robertson says, not specifically, but there was a subtle change in her behaviour where she stopped securing her own rescue which she previously had done. The coroner asks what rescue means. Mr Robertson explains that if someone harms themselves they may take steps to 61/

seek help, such as informing people. (At this point, Jean is commenting to her counsel that this is not true and Zoe never sought rescue)

The coroner states that Zoe took steps in May 2020 to write an advanced directive indicating that if she had taken steps to end her life 62/

she should be allowed to die. She was flagging an intention that she didn't want to be saved. Her words were "I refuse all life sustaining treatment" and listed specific situations and suicide methods. She also stated that with regards to psychiatric care, she did not want to 63/

be admitted again. The ward environment was distressing, previous admissions had been traumatic and there was no understanding of autism. She stated admissions should be purposeful and helpful but they were not. Mr Robertson states that Zoe's advanced directive replicates an 64/

NHS format and it was likely she had taken & adapted it to her needs.

End of questions.

65/

(Correction - in previous tweets I have referred to Jean's legal counsel as her solicitor. While her solicitor is at the inquest too, the person speaking is actually Jean's barrister. Apologies for the mistake.)

Jean's barrister begins questioning Mr Robertson about Zoe 66/

"securing her own rescue". She asks if he saw this in Zoe's notes. Mr Robertson says yes, it was referenced this way in her notes. She asks him if he remembers the conversation he had with Jean about this. He does not remember. The barrister states that Jean is very explicit 67/

that Zoe did not secure her own rescue, on any occasion. The notes are incorrect. Mr Robertson says he will not dispute that, but he doesn't remember the conversation.

They move on to the correlation between the EUPD label and Zoe's increased hospital admissions. Mr 68/

Robertson says it is very clear documented evidence, since Zoe became aware of the diagnosis, the admissions increased. He was asked by how much. He replied, between 2016-2018 Zoe had 1 admission. Between 2018-2020 she had 12.

They move on to discuss the meaning of root 69/

causes, which the coroner asks they move on from, and then discuss whether specific autism service provision would be beneficial. They discuss the autism NICE guidelines and how these were in place since 2012, long before Zoe's engagement in 2016. Her ASD diagnosis was also 70/

well established at this point too. They discuss the reasonable adjustments which Zoe requested in 2016 and how these were initially agreed to, but then went away. The barrister suggests the staff engaging with Zoe had little understanding of autism. Mr Robertson agrees.

71/

They move to 2017, to when the Northallerton community/crisis team imposed a behavioural contract upon Zoe with specific behavioural expectations. That was inappropriate wasn't it, asked the barrister. Mr Robertson agrees and says it was based on the diagnosis of EUPD.

72/

It came to light that in 2018 the community team had sent Zoe to Dr Wilson, the personality disorder specialist, so that she could explain to Zoe why she had a personality disorder. When Dr Wilson saw Zoe she could find no assessment in her notes, so she conducted an 73/

assessment and found that Zoe did not have a personality disorder. The community team were unhappy about this, and complained about being overruled. They wanted a second opinion. Zoe requested to move from CMHT West to CMHT East, but they refused the request. The barrister 74/

states, that was not in accordance with Trust policy was it. Mr Robertson replies, no, it would be normal to offer choice.

The barrister stated that staff found Zoe awkward and non-engaging as they didn't take her processing delay into account. Mr Robertson agrees and says 75/

Zoe was perceived as difficult and hostile. She would go quiet in conversations or become upset.

The barrister stated that was the context of Zoe feeling her autism was not understood or given sufficient weight. That was the foundation. Mr Robertson replies, this and other 76/

factors. The barrister asks if building therapeutic relationships would be fundamental to proper care and this would have to take account of autism. Mr Robertson agreed. She suggests this involves honesty, frankness, and finding ways to move forward. Mr Robertson agrees. The 77/

barrister states this hadn't happened by the time the EUPD label arose. Mr Robertson agrees. The barrister comments it is important to look for improvements, but also to recognise that person centred care was already a well established principle when Zoe was under services. 78/

Mr Robertson agrees.

They move to discuss the EUPD label. The barrister repeats the coroner's questions about whether there was evidence of any assessment or diagnostic process. Mr Robertson says no. The barrister says, given the requirement to consider autism and Zoe not 79/

being aware of the diagnosis, this couldn't be a valid formulation. Mr Robertson agrees and says there was no evidence of process or partnership with Zoe. The barrister says, when the assessment subsequently ruled it out, this made the trust issues worse. Mr Robertson agrees. 80/

They discussed the complaints process and the requests by Zoe to remove the EUPD label. The barrister states the requirement by the Trust to make reasonable adjustments would apply to the complaints process too? Mr Robertson says yes. By the time the records were ammended Zoe 81/

had already lost faith and trust.

The barrister talks about risk and how Zoe's risk was linked to the problem with her medical records. She asks Mr Robertson about Zoe's twitter account and whether Zoe continued to talk about her notes even after the addendum. They discuss 82/

twitter. The coroner comments that Zoe would have needed a lot of time after the addendum to come to terms with it. He says "the point that Zoe could not adjust immediately after the addendum is well made". The barrister asks if Zoe's genuine concerns about Trust services 83/

created a barrier to engagement. Mr Robertson agrees that Zoe had genuine concerns about how she was treated. The barrister comments that Zoe's identity was not recognised. Mr Robertson says it reflected a lack of understanding of autism. They discuss Zoe's wish to engage 84/

with services. The barrister asks Mr Robertson if the problems in Zoe's care had been fixed early on, would she have engaged. He said it would have been a higher probability. The barrister re asks the question. The TEWV representative objects to this & says it is speculative. 85/

They move on.

Questions end.

The coroner thanks Mr Robertson for his evidence and for producing the report and helping him understand certain aspects of it.

We break for lunch.

86/

Next up is Anne Marshall, the deputy director of nursing at TEWV.

The coroner asks Mrs Marshall about her role and experience and then asks about the Trust's position regarding the serious incident review (SIR) by Mr Robertson. The coroner says it is unusually long and 87/

conducted independently, he asks why. Mrs Marshall says that Zoe had made a number of complaints, & the Trust were also aware that she was a "prolific tweeter" so they wanted to be transparent. (This heartened me somewhat, knowing that TEWV were trying to placate #MadTwitter) 88/

The coroner asked if TEWV disputed any of the findings of the SIR and she stated that they "absolutely accepted all the findings and recommendations"

The coroner says that as an Article 2 inquest he was able to examine far more and have a wider scope so more than just the 89/

most significant findings have come up. Mrs Marshall says that although the trust's priority is addressing the most significant findings, there is an equal desire to achieve all the proposed actions.

The coroner asks Mrs Marshall about Zoe's disengagement. She says 90/

disengagement is common, but Zoe's reason to do so was unusual.

The coroner states that he is concerned that there was pressure placed on the "good will" of Dr Kuster to manage Zoe as a care coordinator. He asks if the want of a care plan or care coordinator featured in 91/

previous reports. Mrs Marshall says Dr Kuster was doing the best he could and TEWV generally work very collaboratively with their patients. She says they cannot insist people have a care coordinator if they don't want one. 92/

She says "it is not always possible to find ways to work with people".

The coroner presses the point of no care plan or coordinator. He says "noone is owning Zoe's case". Mrs Marshall responds that Zoe didn't want a care coordinator with the CMHT and Dr Kuster tried various 93/

options. It was complex. She asks, what would be the value of someone sitting in the CMHT overseeing her care, who Zoe didn't want. What would that do?

The coroner asks if hypothetically they could park Zoe's interests and focus on TEWVs interests - they required someone to 94/

oversee her care. He says again, who is owning her care? He asks Mrs Marshall if it would have been appropriate to say, ok, Zoe isn't engaging, and organise an MDT to strategise a way forward. Mrs Marshall responds, I suppose you would hope that had happened. She gives an 95/

example of someone not attending an appointment and describes that this would be discussed at an MDT and they would reach out to the person, assertively. Ultimately, if they don't want to engage, unless you use the mental health act, we can't force them. We would update the 96/

risk assessment and discharge. We wouldn't hold a case open and wait for them to come back.

The coroner asks of there is a safety net in this risk assessment. Mrs Marshall says they might contact family with information or send a letter to the person with ways they can 97/

re-access services. The coroner asks if this is written procedure. Mrs Marshall says it is part of the CPA standard practice.

The coroner asks, would you be worried if there was no care plan. She replies, we absolutely should have a robust care plan for people under 98/

services which must be collaborative, and if they are discharged it will be a risk plan. The coroner asks about the Tuke Centre and how a care coordinator would have been helpful to liaise between them and TEWV. Mrs Marshall says the GP is the key person there. 99/

The coroner states that the GP is not a specialist so they would essentially be a post box.

(I will finish Mrs Marshall's evidence tomorrow, I'm afraid I have run out of steam for today ❤️) 100/

The coroner states that TEWV has an autism team in one locality, which uses paris for medical records and has access to notes and joined up communication and notification of incidents etc. Isolated working (like
sending people to the Tuke Centre) makes this difficult. If it 101/

was 'in house' it would be easier. He asks Mrs Marshall if that would make more sense. She states she can't pass comment as it is the CCGs decision. He asks if he wants to prevent future deaths, he should direct this to the CCG? Mrs Marshall says yes. He asked which CCG, she 102/

says North Yorkshire and York. He asks, to assist him with a potential regulation 28 report, which office would this be? She was unsure.

The coroner asks if TEWVs autism service provides wrap around care or if it's like the Tuke Centre and only provides 9-5 therapy for 103/

outpatients. Mrs Marshall explains that they are a specialist team who provide therapies but if someone was in acute distress, for example, they would be better served by the crisis team, not the autism service. She describes the framework and the coroner comments, that's 104/

exactly what the Tuke Centre does. He asks if they have the same skill set, she says most likely yes.

He mentions that Zoe attended the Tuke Centre and the hope was that she would improve, but she didn't. He moves to the rolling out of autism awareness across the Trust. 105/

Mrs Marshall explains that all staff are receiving level one training on autism awareness, including non clinical and clinical staff, while only clinical staff are receiving level 2 training. The coroner asks if the training discusses the nuances of autism, such as gender 106/

differences. Mrs Marshall says the higher level, level 2, discusses how autism presents but reflecting on the coroner's examples she says she will consider whether the training is sufficiently robust. She explains its currently being rolled out and has good uptake. 107/

Level one is a one hour training. Level two is a day.

The coroner asks about reasonable adjustments. Mrs Marshall explains they are individual and specific to each person, although generally staff are aware of things like sensory overload etc. The coroner says firstly you 108/

need to recognise autism before you can compile these adjustments. Mrs Marshall says they have these conversations with patients all the time, including anxieties, fears, difficulties with clinical settings etc. This is normal practice. The coroner asks, unless you assess a 109/

patient who is known to have autistic behaviours, unless you investigate a sensory assessment, how can you do this? Mrs Marshall answers, autistic people have a spectrum of need. Some come with a full list of things to ask of the staff, people with greater needs would be 110/

assessed. The coroner asks, how can you say one person is in greater need than another without doing the assessment? Mrs Marshall says she is confused and asks why he thinks they don't do that. The coroner comments, say I have got an infection and you give me penicillin and 111/

I die. I knew I was allergic but you didn't ask. If you had asked, I would have told you. Some people will come to mental health services and not tell you they are autistic, so you don't ask, and then provide the wrong treatment. Mrs Marshall describes primary, secondary and 112/

tertiary services and how people have different levels of need and will seek help from different services. She said a person may go to their GP feeling low and get antidepressants but they don't work, so they go back, they get referred to secondary services, & they maybe try 113/

another medication or a therapy, and maybe that doesn't work so they try something else or look at other angles. She explained that mental health services are trial and error. You try something and see if it works. The coroner asks, so you see it as a progression, not 114/

something that should be provided from day one? She says yes. The coroner asks how many community patients are autistic. She's unsure. He asked if this was measured, she says if they are officially diagnosed their diagnosis is coded. The coroner says Dr Kuster reported 115/

increasing numbers of mental health patients with autistic behaviours. Can you not measure that? Mrs Marshall replies, only with a diagnostic code. The coroner asks, do you actually audit? Could you look at ASD levels in practice? Do you actually do that? Mrs Marshall 116/

replies, not that I'm aware of. She says not everyone will have a diagnosis. The coroner says if you had a handle on the numbers you could identify the extent of issues, measure increases, gender, and measure what provision is needed. How can you say, we anticipate "xyz" 117/

number in a year when you've wholly underestimated the level and it's double that? How do you provide information to the CCG to inform their financial provision? The coroner states firmly, I am driving you to accept that maybe you should measure it. Particularly in females. 118/

The measurements are important because of the trend. When you're dealing with more people (eg autistic females) and they have a higher risk, doesn't that mean you are taking on a higher risk of suicide? The issue is the risk profile of your patient is now increased, 119/

particularly in autistic females. Mrs Marshall says in risk assessment they normally look at risk factors. The coroner says ordinary risk factors don't cover autistic people. Ordinary factors include older, unemployed, single men. Zoe didn't meet this. Are you now focusing 120/

on this? Mrs Marshall explains the Trust are doing a "tremendous" amount of work on safety tools & risk factors, but their factors are much broader than this. The coroner asks, is there something, somewhere which says what to watch for in young women? Mrs Marshall says Jean 121/

Zaremba has been supporting them with training on that. At this, Jean speaks up in the court and says that she did a recording to be played in training but she asked repeatedly for feedback and never received it, so she has no idea if it was used or if it was a tick box 122/

exercise. Mrs Marshall suggests that TEWV add Zoe's case to their harm minimisation training, as the "powerfulness of a patients story is unparalleled".

The coroner says that clinicians are so used to looking at body language in their mental state exams, from day one they 123/

need to understand autism. Mrs Marshall says she understands. She says "we deal with people. We work with people. We seek to be non judgemental". We have words like congruent and incongruent to describe emotions and body language not matching up. The coroner says, it's a 124/

national problem, not understanding autism. Mrs Marshall agrees, but goes on to say how far we've come from when she was a nurse in the 1980s when they had no concept of autism in this way. Jean Zaremba again speaks up in court, "we've certainly known about autism in females 125/

since the 1990s. That's 30 years."

They begin to discuss aspects of the action plan written in response to the SIR findings. The coroner mentions that north Yorkshire autism services are still commissioned to the Tuke Centre. Jean Zaremba points out that this is just for 126/

autism diagnostic assessment, not treatment, for which people still have to submit an individual funding request. The coroner acknowledges this as an important point. He goes on to say that Zoe was diagnosed autistic in 2011 but didn't receive a sensory assessment until 2019.127/

He asks Mrs Marshall if she agrees that there should be a holistic approach to care. She agrees. He asks, would you agree there's a problem if the communication between therapist-clinician isn't there, and there's no MDT or shared notes - doesn't this rail against a holistic 128/

approach? Mrs Marshall says she doesn't understand, communication is key to what we do. The coroner asks if persisting with an outsourced service creates a barrier? She replies, absolutely. The coroner said he had a picture of services where a dual qualified practitioner 129/

existed embedded in a team who could provide joined up care. The notion of joined up care seems so remote from the current set up. Mrs Marshall replies, in Zoe's case I would agree. The coroner asks her, can you reassure Jean this will not happen again? Mrs Marshall is very 130/

taken aback and says "it's putting me in a very untenible position". She said she would sincerely hope the actions they are putting in place would support clinicians and she is seeing the benefits of these actions already, but overall, she doesn't feel able to say. 131/

The coroner asks if they are at the start of a process at the Trust. Mrs Marshall says we are always growing, we're a learning organisation. This is an absolute focus for us. The coroner comments that is clear from the acceptance of the findings of the SIR & their use of an 132/

independent investigator.

End of questions.

Questions now from Jean's barrister.

She says individual care is important but taking up data to see a wider picture is important. Mrs Marshall agrees. The barrister says that funding arrangements for autism services mean 133/

that, unlike in Teesside, County Durham and Darlington where TEWV provides autism services, in North Yorkshire the Tuke Centre is commissioned to provide autism assessment but if someone needs autism adapted therapy they must apply via an IFR. She says person in area A gets 134/

an internal Trust service, while person in area B has to take extra steps and apply for funding. Mrs Marshall replies that this is replicated across the country, it's not unique to TEWV.

They move to discuss TEWVs action plan, formulated in response to the serious incident 135/

review (SIR). The barrister asks, as Mrs Marshall was part of creating the action plan, did they get specialist autism advice? There is a long pause. Mrs Marshall says she wouldn't like to say definitively. The barrister asks, has a specialist been involved in plan 136/

development? Mrs Marshall says yes but she is unsure at what point in the process they were involved. They discuss the issue of autism presenting differently, particularly in women and girls. As recommended in the SIR, training on female presentation of ASD. The barrister 137/

asks if this is addressed in the action plan. Mrs Marshall replies that if it isn't, she can address it. If it's not explicit, they can review the training. The barrister states that this is important generally, but specifically important regarding suicide risk.

They move 138/

on to look at care planning for Zoe. The barrister states that Dr Kuster took on an informal oversight role in Zoe's care. Information was coming in to the Trust from A&E, twitter, etc. but was anyone looking at it? Dr Kuster said that he could he could have put a point of 139/

contact/coordinator in place, is this possible? Mrs Marshall says this is difficult. When Zoe was not in hospital she was not under the community services and TEWV do not have a system whereby a person takes responsibility for someone who isn't a patient. The barrister says 140/

that Zoe was in receipt of services. Mrs Marshall says that there is no current system in place like that. She explains that if this information is coming in to the Trust and it is concerning, then staff can raise this. The coroner comments that this is the point, who do 141/

they raise it to?? Mrs Marshall replies, to someone with oversight, a team manager for example.

They discuss the new harm minimisation policy, introduced in July 2020, just after Zoe's death. The barrister says that the new policy includes a section on the dangers of 142/

formulation and diagnosis, and how they can have a potentially damaging effect on people, particularly EUPD. She asks was this added specifically in recognition of Zoe's death? Mrs Marshall says this is possible, yes. The barrister states that measures were introduced at the 143/

Trust to provide more MDT oversight. She says Mrs Marshall says there have been clinical audits at TEWV, and she asks what these include. Mrs Marshall explains that TEWV are doing extensive audit work currently, including senior staff going through individual cases and 144/

ensuring records properly reflect patient care.

The barrister asks Mrs Marshall what new tools exist to ensure formulation is robust. Mrs Marshall explains that the records system is more robust now. The barrister asks what about autistic patients who are undiagnosed? 145/

They discuss how TEWV is working towards a more individualised approach which considers ASD and how with greater MDT input, there is a widening of ideas which are more likely to consider autism. The barrister says that this feeds into ASD training and awareness. They discuss 146/

the trustwide autism project, which is separate from the autism clinical team. The project is involved in strategy. The barrister asks if there is specialist provision for autistic females? Mrs Marshall says that she is unsure. The barrister asks what provision the autism 147/

clinical team has for autistic females. Mrs Marshall says she is unsure. The barrister says obviously not everyone is an autism specialist, and asks about the training TEWV are rolling out. Mrs Marshall says all staff are receiving level one training, which is one hour long, 148/

and clinical staff should be receiving level two training too, which is one day long. She then says it's broader than just this training, rather it is a running thread throughout the Trust. The barrister says that delivering care which does not account for autism is damaging 149/

to autistic people. She asks if staff are trained enough to recognise autism and not cause harm? Mrs Marshall explains that the Trust are building capacity and capability across their teams and are having lots of discussions and conversations. The barrister asks, how do you 150/

objectively monitor the effectiveness? Mrs Marshall says one of the key ways is asking patients, including surveys and conversations with individuals. They also look at clinical outcomes in a range of ways to measure effectiveness. The barrister says shouldn't TEWV have been 151/

doing this anyway? Mrs Marshall says that autism care is an emerging field, so it's about improving awareness. The barrister says that one of the recommendations from the SIR was improvement of the complex case panel framework and that they should have an autism specialist. 152/

She asks if this is done? Mrs Marshall says yes. The barrister asks if an autistic person wished to attend a meeting about themselves, could they? Mrs Marshall says, yes, they could attend. 153/

The barrister asks if TEWV are auditing how reasonable adjustments are put in place. Mrs Marshall says that the way they are doing that is by auditing how care plans meet patient needs. The barrister asks about suicide prevention. She mentions meeting the needs of autistic 154/

people & asks if work has been done around this, for example on risk assessment tools. Mrs Marshall says that it's not so much about tools, but about individual approaches to communication.

End of questions.

Questions are now posed by Ms Gillson, the TEWV representative. 155/

She says that the underdevelopment of autism care is a national problem with no quick fix, rather an ongoing piece of work. She asks Mrs Marshall to explain to the court that TEWV are not merely dragging their feet, rather, the relatively small amount of work they have got 156/

through so far reflects how much there is to be done. Mrs Marshall agrees and repeats this.

The TEWV representative says that the court have heard that communication with Zoe and her family was often lacking in compassion and kindness. Mrs Marshall says "compassion and 157/

kindness is at the heart of what we do". She explains that TEWV are now doing training for staff about compassion and kindness towards both patients & staff. She explains that it's important staff learn how to be kind to themselves, and also to reflect on times they haven't 158/

been as compassionate with patients as they could have been. Mrs Marshall says it's very emotive training and says she has done it twice herself. The TEWV rep asks if this training is now complete, and Mrs Marshall says it has a high uptake.

The TEWV representative asks 159/

about autism services within TEWV and they discuss the new "scaffolding support" which is in place to support clinicians. Mrs Marshall explains that autism is one of their identified areas where staff can receive specialist support. The TEWV rep asks if teams are making 160/

active use of this service? Mrs Marshall explains that in North Yorkshire, the community team Zoe was initially under (CMHT West) are now one of the highest users of this service. The TEWV rep asks if this is due to the autism training. Mrs Marshall says it could be.

161/

The TEWV rep asks Mrs Marshall about the addendum added to Zoe's notes and states that it took too long for this to be done. She asks what has been done to change this. Mrs Marshall says that they have done work to make this faster, and staff can now seek additional support 162/

to help them with this. The TEWV rep asks about corporate staff who do not have clinical interactions with patients but who still may speak to them, such as information governance staff. She asks about training for them. Mrs Marshall says they have received level 1 training 163/

and empathy training. The TEWV rep talks about tertiary services such as the Tuke Centre & asks if TEWV have any clinicians like Dr Oswald. Mrs Marshall says possibly, but maybe not, she can't speak for all staff. She says they do not employ autism specialist psychologists. 164/

The move to discuss "data crunching". The TEWV rep describes how TEWV put together business plans to request services from the CCG. She asks are statistical trends used to inform this? Mrs Marshall says yes. The TEWV rep says, when the CCG contract ended, did TEWV have a 165/

seat at the table to request autism services? Mrs Marshall says yes, and that Jean Zaremba had attended a meeting like this. The TEWV rep re-outlines that TEWV does analyse patient statistics and data which is used to highlight need to the CCG and the decision was taken to 166/

commission services at the Tuke Centre. She asks Mrs Marshall if the "scaffolding" is available across all localities. Mrs Marshall says yes.

Questions end.

The coroner thanks Mrs Marshall and says that evidence is now concluded.

167/167

#JusticeForZoe