The first witness on Day 6 of Jessie’s inquest was Dr Judy Eaton. She gave an affirmation and her full name to the court.
Dr Eaton told the court that she is a Consultant Clinical Psychologist, registered with the Health and Care Professions Council and Chartered with the British Psychological Society.
Asked by the coroner how long she had been in the role, Dr Eaton told the court that she had been working as a Clinical Psychologist since 2002, and she had been a Consultant Clinical Psychologist since 2011.
The coroner explained to Dr Eaton how the process would work.
Coroner: Can I take you back to 2018, were you asked to conduct an assessment, with another individual, in respect of Jessie
JE: Yes, we were commissioned by the Brighton and Hove Clinical Commissioning Group (CCG) to conduct an assessment, with a multidisciplinary team.
Coroner: What was the purpose of that assessment? What were Brighton and seeking your advice on?
JE: Partly to confirm the diagnosis of autism, that Jessie received in 2017 I believe when an inpatient, and to advise on the level of support and how best to communicate with, and support Jessie going forward
Coroner: Please don’t think this is insulting in any way, but what experience do you bring to this assessment to enable you to confirm a diagnosis of autism?
JE: From 2002 onwards I was a Clinical Lead for an Autism Diagnostics Service in the NHS.
From 2011 to 2015 I was employed as Lead Clinical Psychologist in a CAMHS Inpatient Service… I have conducted many thousands of assessments over the years and specialised particularly in the assessment of women.
Coroner: Before we come onto Jessie herself, are you able to summarise, please say if it is impossible to do so, are you able to summarise at all the difficulties individuals have if they have a diagnosis of autism? What are the main key features individuals have?
JE: Autism is a wide spectrum, are some individual with significant learning challenges, wasn’t the case for Jessie. Sadly, she was fairly typical a lot of young women we see, not diagnosed until she was 15, fairly typical across the board, these young women effectively fly under the radar for the first ten to fifteen years of their lives, and cope.
Then when they go to secondary school the academics and other [missed] increase and features of autism become more apparent. Difficulties with communication, reading people’s intent, reading people’s [missed section].
Friendships can be very intense, often these young people become very vulnerable when trying to negotiate these situations, fairly typical scenarios for a young woman.
Coroner: You say fairly typical and Jessie wasn’t diagnosed until 2017, and we’ve heard from Jessie’s parents of difficulties that arose when she went to secondary school. Could I ask you to explain the assessment process.
JE: For Jessie?
Coroner: Yes please
JE: We already had access to an early history if you like, were focused on more recent developments, since she’d become more unwell. Carried out a number of standardised assessments with her, pragmatic language assessment via the Speech and Language Therapist [missed detail], looked at her adaptive functioning, often their ability to function can be much poorer than intellect suggests it should be… looked at everyday functioning, did a cognitive assessment, and she did struggle to complete that. She became distressed towards the end and the medication she was taking had an affect on her processing speed and ability to remember information.
Coroner: She was 16 at the time of this assessment?
C: Tell us what the outcome of your assessment was, what did you discover following the assessment?
JE: Would you like me to read from the notes I’ve made, is that ok?
C: Yes of course
JE: We confirmed the diagnosis of autism, that wasn’t in question. Also looked at her difficulties with introspection and demand avoidance, a number of features we looked at. Identified her very strong sense of justice and injustice, and difficulties she had in moving on from injustice. The difficulties she had in things going off plan, talked about her meltdowns… until the point she was an inpatient, aggression towards others was not an issue.
Identified processing difficulties… she needed more time, particularly when distressed to process information and respond.
Also acknowledged her facial expression and tone of voice didn’t always reflect how she was feeling, could be perceived as being rude when she wasn’t, was trying to process information.
A lot of talk about fight/flight/freeze response and how she was very quickly triggered into it.
Talked about support required from her parents to scaffold her everyday life, including friendships…. Fairly typical, very often emotionally a lot younger than chronological age and need support for a lot longer.
Coroner: Can I pick up two aspects, you mentioned demand avoidance, can you explain to the jury what you mean.
JE: It’s a very abstract concept to describe and a very controversial area. We are aware a number of autistic people who find if very difficult to follow internal and external demands, can be when hungry, thirsty, need to use the bathroom… fairly typical of this, very quickly triggered into this anxiety state when requested to do things. We recommended things like a low arousal approach and reducing demands wherever possible on her.
C: The other point, more time to process… are we talking a few minutes, several hours or several days?
JE: That varies depending on the level of emotional arousal, when someone is extremely distressed the primitive part of the brain takes over and logical thinking doesn’t happen. Trying to support anyone in high level of upset makes it very difficult. I imagine for Jessie, she would ruminate on things, take time after event to go over things in her head, try to work them out and rationalise. Because of her rigid thinking style she would find it hard to move on, I’d say hours and days, things could come back to her several days later.
Coroner: You would need the emotional arousal?
JE: No. Emotional arousal would make it almost impossible to think logically, but even when not upset her rigid thinking style would make it very hard for her to move on from things.
Coroner: So a change in an appointment, or a situation where someone came to see her who hadn’t got an appointment, would that trigger an emotional arousal?
JE: Yes, yes. When life is unpredictable and you’re struggling to keep control of it, having a timetable for things is very important, having a change in routine could have triggered her very easily into being dysregulated.
Coroner: Would you expect to see something though? Some sort of reaction?
JE: Not necessarily, she might not show it at the time, could become more of an issue later, depends on who was there, who was supporting her and how the situation was handled.
Coroner: I will push you a little more, as it may have some relevance. So she may not show some form of emotional arousal at the time … she may, as you say, ruminate on something for a period of time. I’m trying to understand, are you saying no one caring for her would have any understanding that caused some sort of reaction? I’ll reword, if something has triggered her, caused some emotional upset for example, would you expect to see something, at some stage, relating to the fact she was upset about it?
JE: Yes, but it might not be, it could be immediate or it could be some hours down the line when the impact had got through to her conscious thinking. I think it would depend on how she was. Other factors, how she was generally on any given day, we all react to situations differently depending on how we’re feeling on the day.
Coroner: Appreciate the circumstances I’m referring to you aren’t within your own knowledge, this report was done in 2018, trying to understand what the carers would need to be looking out for, to understand she was in some form of emotional distress and therefore needed support
JE: Yes, I mean I may not have direct knowledge of Jessie’s case but have worked on inpatient wards where there are autistic patients, am used to kind of support needed for that sort of situation. A lot of it comes down to training, to staff being aware of potential triggers, of being sufficiently aware of the young people they are looking after and what to look out for, could be pacing, wringing hands together, usually some physical sign. If staff were aware of those signs, would be able to pick up someone was becoming distressed.
Coroner: OK, I started to interrupt you when you were going through your assessment of jessie. Was there anything else you wanted to add to those, you explained the key areas?
JE: Yes. I don’t think, I mean, is there anything specific you’re?
Coroner: No, if you’re happy with that I’ll move on from there. Next area wanted to cover, was what did Jessie need at that time, back in 2018. What was it you felt Jessie needed?
JE: She was in a difficult situation, when we attended her Care Treatment Review was talk of her having to become re-sectioned because talk of her presentation becoming more unsettled… in an ideal world would have been better. Cared for in the community … at time recommended specialist schools with strong pastoral support… could she have been supported, would been ideal, would have given her chance to [missed] recover not in an inpatient setting.
Coroner: If school placement found… what would have been next stages followed on from that?
JE: She would have continued to have needed a significant amount of support I think, because of her functional ability which was not brilliant, because of her ability to manage her own self-care and physical symptoms, not uncommon for young women who are autistic to have physical [missed] alongside, research emerging about physical vulnerabilities that go alongside being autistic. Would have continued to need care.
Coroner: We know Jessie had care in the community, supported by two carers, is this kind of thing would have expected to be happening?
JE: Potentially, Supported Living, depends on the quality of care provided, can be variable in the community, often case when young people discharged form inpatient units, difficult to find the right care for them. It’s all about relationships and ability to develop trusting relationship with a carer, to enable her to settle sufficiently to enable them to cope.
Coroner: This is all new to jury, may be, I don’t know. You talk about in an ideal world would be some form of Supported Living, but in reality what is out there? To support these individuals?
JE: Very little, it’s very variable. Have worked with a number of young people where getting that kind of support is very difficult. A lot of Supported Living homes are focused on people with a learning disability, which Jessie didn’t have.
A lot of these places are staffed by locum or agency staff, not necessarily consistent, not sufficiently trained in more complex case of autism. Don’t mean disrespectfully to Jessie, clear she and others like her is more complex than some people.
In my own home area, Norfolk, we have NHS Navigators, supported and trained to support young people in the community, try to avoid inpatient admission. They provide care to families to try to ensure doesn’t get to crisis point.
Coroner: In-house care in own family home or their own accommodation?
JE: In the family home, to try and prevent admission to inpatient units in first place. Aware that’s not what you are asking, but all part of community picture where people are trying to provide better services for these young people, but it’s difficult to do that.
Coroner: If you were to start with a blank piece of paper what would you need to put in place, to provide the right support for individuals like Jessie?
JE: You’d need support workers who were well trained, adequately rewarded, not just in financial terms, but in training and support and it being a valued career path, Somebody who could be with the young person on a long term basis, frequent turnover of staff and frequent use of agency staff isn’t helpful. Someone who could build relationships and work with the young person and their family.
Coroner: So resources you would need?
JE: Resources, a commitment to training, a commitment to learning about how some of these young people present who are more complex, the comorbidities with mental health problems, the physical health problems, the whole picture really.
Coroner: Just to pick up, so I’ve got it absolutely clear, you said it varies around the country, are there provision, in parts of the country are there appropriate provision; have you come across a particular placement where they provide what you’ve suggested what you want?
JE: No. In all honesty, no. I know of some bespoke placements, number of relatively high profile cases such as Bethany, don’t know if the jury are aware, she was an inpatient for a long time and has been provided with what I believe to be a successful bespoke package. Again that required a lot of planning, pushing on the part of her parents to get that support in place. It is achievable but needs commitments from all parties, that’s health and social care. Also need provision to support mental health crises, a lot of young people are on a rollercoaster, would be OK for a while and then need mental health support, so a joined up service is needed between health and social care.
Coroner: So even if a bespoke placement, its not necessarily going to stop admission to hospital if have a crisis?
JE: Potentially not, but hospital admission should be for short term management of mental health crisis, if plan in place to return to suitable placement afterwards would be preferable to long term hospital admission.
Coroner: Give me an idea, how many individuals come across similar to Jessie, what numbers are you looking at?
JE: Sadly, a growing number. I’ve supported a number of young people in very similar situation to where Jessie was four or five years ago, currently supporting number of families with young people not quite at that stage yet, but this sort of situation could develop without the right support early on.
Coroner: What’s your fear for those people?
JE: That they’ll end up in the same situation as Jessie
The coroner thanks Dr Eaton and says that she will pass over to Interested Persons for their questions, starting with Jessie’s family.
Counsel: Can I begin by asking you some questions about the ward environment for patients like Jessie, at the time you did your assessment in 2018, you were commenting on the impact the ward had on Jessie. The report says it’s clear she finds noise and general hustle and bustle of the ward environment difficult to cope with. Can you explain why Jessie found that difficult to cope with?
JE: Because she said so. She voiced that view, she had recognised sensory difficulties and challenges. I’ve worked in these places, they’re noisy, very brightly lit, not often as therapeutic as they’d need to be. Very often aren’t quiet places where young people can go for low arousal environment., a lot of wards have a token sensory room but not geared up to individual sensory preferences of that person.
Counsel: Do you have views of the impact of that environment on Jessie’s recovery?
JE: Would be like someone… someone with hyper sensitivity, hyper sensitive hearing, hyper sensitive to smells and bright lights, would be almost like form of torture I imagine… Like you or I being put into a loud environment and not able to escape from it. Would cause stress on short and long term I think.
Counsel asks if she were aware of any reasonable adjustments that can be put in place to assist with that.
JE: The good news is this is being taken seriously, there’s been a whole Transforming Care Review, started in 2022, I was part of the Strategic Oversight Board, chaired by ex Children’s Commissioner Anne Longfield. Overseeing improvements to mental health inpatient services, have seen draft of that report, they are recommending sensory needs taken into account and reasonable adjustments are made in units going forward… good news plan in place and recognition of distress this causes to young people, but guess will take time to feed through to all units operating.
Counsel: We’ve seen Jessie’s Autism, Crisis and Wellbeing Plan, was after your involvement with her, in general can you tell us what you understand this is?
JE: A support plan you say?
Counsel for Brighton and Hove; Sorry to interrupt, haven’t we had the best evidence from the person who drew it up?
Coroner: Yes, but I think the question was, have you seen it?
JE: I’ve not seen that particular plan, but the idea of those plans and communication passports are supposed to be kept in young people’s files and accessed every time a new member of staff goes onto the ward, so staff can remind self of reasonable adjustments that young person might need.
Counsel for Jessie’s family: You’ve been asked some questions by the coroner about how a young person might demonstrate arousal, we see in Jessie’s PBS Plan if she is pacing she might be getting distressed, is that an example of the sorts of information staff should be aware of?
JE: It could be, in a good care plan I’d expect to see more detail than that, and more input from Jessie herself. More information about how she feels, how she interprets when she’s feeling stressed, or indeed if she did understand when she was getting stressed. Simply saying pacing around.
Counsel for Sussex Partnership: This witness has not seen the plan, we’ve heard lots of detail, unless we’ll take the witness to the plan… misleading to take to
Coroner: Its two lines, if we can read out
Counsel for Brighton and Hove: This is the problem
Counsel for Sussex Partnership: Hasn’t seen the totality of the plan, this witness is witness of fact not an expert witness
Coroner: If stop at that point
Counsel for Jessie’s family: Your assessment in 2018 also included your view on potential emergence of Emotionally Unstable Personality Disorder. Do you recall addressing that point in your assessment report?
JE: Yes I do, personally I’m not hugely supportive of labelling people of Jessie’s age as having a personality disorder, that places the blame if you like for any dysregulation on the person rather than on the circumstances around them. Also someone’s personality at 16, 17 is still emerging anyway…. for me it’s more of an expression of distressed disorder, not a great fan of labelling young people with emerging personality disorder.
Research does show having that label can impact on the person, and the way they’re perceived, as being attention seeking or hysteria [missed]… can mask difficulties someone with autism is facing.
Coroner: Can you be clear, at 16 or 17?
JE: 16, 17, 18 I have difficulties with it per se if I’m honest. It’s a very difficult label to put on anybody, bearing in mind autistic people are behind their chronological age even someone of 23, 24, 25 can be still developing… I’ve spoken to a lot of older women with that label and it has an impact on them for years to come.
Counsel: We also heard evidence about Jessie’s physical issues including chronic pain and hypermobility. Did you have a view what impact that pain had on Jessie’s cognitive functioning?
JE: Didn’t conduct a detailed assessment of that, clearly impact of chronic pain will have impact on someone’s function. Most what we saw was impact of medication on her functioning. Didn’t explore pain.
Counsel: Did you explore her trauma?
JE: Not explicitly, we were aware she reported a lot of what happened to her as traumatic, wasn’t what we were asked to explore, was explored briefly. Again I draw on the experience of working with lots of young women, this Complex Post Traumatic Stress Disorder picture is very common, a series smaller events build into a more chronic picture in terms of trauma and stress.
No further questions from Jessie’s family. Over to counsel for East Sussex County Council.
Counsel: Dr Eaton could I just check, do you, just to confirm your area, or remit in terms of diagnoses. Are you qualified to give a diagnosis of EUPD, or would that fall to a psychiatrist?
JE: That would probably fall to a psychiatrist
Counsel: You’ve talked about what you might think of as the ideal community placement… if a young person is experiencing a crisis and even that placement, which is a stable one, considers its unable to meet those needs, it is still possible for those placements to break down isn’t it?
JE: Yes, potentially
Counsel: And chances of breakdown will increase if young person is experiencing multiple crises due to multiple difficulties?
JE: Potentially yes
Counsel: And with multiple hospital admissions, will be inevitable instability in placement
JE: Potentially, I guess it depends on how well that team were supported post-discharge from hospital
Counsel: Just to be clear, in 2018 did you have any involvement, apart from making recommendations, in sourcing any of those special school placements?
JE: No I did not
Counsel: That was the point you had experience of working with Jessie … do you have personal knowledge pf any of searches documented after that?
JE: No I don’t
No further questions from East Sussex. No questions from Brighton and Hove City Council. Over to counsel for Sussex Partnership.
Counsel: Just one line of questions for you about the way Jessie exhibited signs when she was distressed or dysregulated…. From your personal knowledge in 2018, can you summarise what signs Jess exhibited at that point?
JE: During our assessment she became upset, it was something outside of the assessment, think it was a discussion between her parents, at that point she did become upset, jumped onto a desk and was throwing papers onto the floor. We saw how quickly she could become dysregulated, but she de-escalated and became calm relatively quickly, with the right support, at that time.
Counsel: Thank you, are you able to assist at all with what that presentation may look like at the point of her last admission
JE: I wouldn’t be able to comment, haven’t seen her since 2018, would not be able to comment on that.
No further questions from Sussex Partnership. Over to the jury for their questions.
Juror: Just want to confirm something, it’s clear that, it sounds that any sort of rota of staff, not necessarily be familiar to her, that would be a distressing factor, is that what you’ve suggested?
Coroner checks Dr Eaton heard the question, she did
JE: Yes I imagine it probably would have been. I appreciate changes in staff are inevitable, you can’t have the same staff and also you need a team of people around a young person, otherwise person caring can become burnt out but I think a consistent team would have helped, people she could get to know and build some rapport with would have been helpful.
No further jury questions and Dr Eaton is released at 10:47.