The first witness after lunch on day two was Dr Simon Rowe, a principal clinical psychologist.
He told the coroner that he had qualified in January 2010.
The coroner said that she would ask a few questions relating to the Transforming Care Autism Team assessment, known as a TCAP.
Dr Rowe told the court that TCAP was a specialist multidisciplinary service operating across the whole of Sussex. He said it was made up of psychologists, occupational therapists, speech and language therapists and others [did not catch]. Dr Rowe told the court that they would work with the client and their family, and their support maybe around what it means to be autistic, or they may support formal assessment.
Dr Rowe said that the service worked short term with people generally up to six months. He said they would compile all the information about the person and develop support plans to inform their care. They would help clients understand what their needs and plans might be, and support families and other providers to understand them.
In response to a question from the coroner, Dr Rowe said that the assessment could be carried out when someone is in hospital or in the community. He said for a person to be open to the service, they would need to be open to Sussex Partnership, have a full diagnosis of autism at the time of referral, and have a Lead Practitioner.
With regards to Jessie, Dr Rowe told the court, she was under CAMHS transitioning to adult services and had already been assessed and found to have autism.
In response to questions from the coroner Dr Rowe said that the TCAP team would provide training to other professionals, across Sussex Partnership Trust, to independent providers and in the case of Jessie they did provide some training to Wrixham Care.
Dr Rowe told the coroner that training would be provided with the caveat that it is not a broad approach that they would take, their focus is very much on reasonable adjustments and what they need to consider to support this person and ensure consistency.
Dr Rowe said that their work is very individual based, whilst there may be some commonalities and themes based on a number of different factors, the focus was very much on an individual, and not just their autism but any other factors for them including their mental health.
In response to a question from the coroner Dr Rowe said that the service came under the Sussex Partnership Trust and that any assessment or notes are held in a person’s records and are available to any of the professionals working with an individual who can access the care notes system.
Dr Rowe confirmed that the Autism, Well-being and Crisis Plan was the formal assessment conducted by his service and put together when working with Jessie.
The coroner then handed over to counsel for the family for their questions.
Counsel: Good afternoon Dr Rowe. You’ve just explained the purpose of your assessment is to compile all the information known about a person and develop a support plan for them. That’s all the more important where there are a number of professionals interacting with the patient, is that fair?
Counsel: And where there are quite a lot of records? It’s useful to have one document that draws in all those themes otherwise management might get lost?
Counsel: So the client knows their needs and anyone treating them in the community understands the client’s needs?
SR: [Can’t hear]
Counsel: With that in mind the work you did with regards to assessing Jessie was to provide advice to people of how best to support her, is that fair?
Counsel then took Dr Rowe to certain extracts from his report and asked him to explain more to the jury.
He agreed that the noise on the ward had a destabilising effect on Jessie. He explained that Jessie would feel overwhelmed by demands placed on her.
Counsel read an extract from the Autism, Well-being and Crisis Plan that said Jessie suffers significantly with anxiety that can be reflected in her avoidance of demands. The report said that even simple demands could be found to be overwhelming by Jessie, and her response needed to be understood as her doing the best she could.
Counsel: so the purpose of the plan is anyone who deals with Jessie understands what they’re witnessing might be distress and anxiety, rather than defiance?
Counsel: We also see when Jessie is struggling to regulate herself she engages in high risk behaviours and it’s important to that Jessie is managing in the best way she can on these occasions and she is likely to feel completely out of control. She will require ongoing support to identify that she is starting to struggle.
The suggestion is that a very useful task would be to try and identify early warning signs?
SR: Absolutely. The approach we use is to try to intervene as early as possible before dysregulation escalates.
Counsel: Presumably because it’s much harder to help someone when they’re in an extremely distressed and dysregulated state? But it may be possible to intervene earlier?
SR: Absolutely [fuller answer – didn’t catch].
Counsel: you say looking at Jessie’s self harm and trying to understand what needs she is trying to have met is an important part of caring for her?
SR: There are a number of different hypotheses about why Jessie may engage in self harming behaviours… I think it wouldn’t be one approach that works all the time, it’s about trying to help people to understand… [didn’t catch] lots of different things, suggestion that some are about regulation… some about response… There are a number of different facets we’re trying to explain, try to look as early as possible to understand what’s happening. Is the environment calm? Is a routine in place? Did an unexpected event take place? Difficulty in the afternoon might relate to processing and being more tired.
Counsel: So potentially your plan helps people to understand the afternoon may be more difficult for Jessie in terms of how she reacts?
Counsel then went on to discuss what Dr Rowe’s report had said about triggers for Jessie.
Counsel: Your plan refers to triggers… It says it is important to recognise even when we’re not aware of what the trigger is, there will be one. Why is that important?
SR: Often when people are working with someone new they say the behaviour just happened… We get the narrative that nothing caused it, there was no trigger. We’re trying to emphasise there will be a trigger, something will have caused that to develop, even if we’re not aware of what. It may be subtle, things we can’t identify, but to suggest there is no cause to it, is not helpful.
Counsel: In terms of how staff should try and get that information from Jessie, the plan gives some guidance about the right times to try and have those conversations. Can you explain how that works?
Dr Rowe caveats his answer by saying that it is an older assessment, he then continued.
SR: If Jessie was finding it hard to regulate or discuss her experience… often saying that, crisis is probably not the best time. Then it is about stabilising, getting the dysregulation down, so she feels more safe and calm.
When it’s an appropriate time it may be appropriate to think about what happened there, are there some things Jessie might not be aware of? Which is why it’s important to learn from incidents when they occur.
In response to a question from counsel Dr Rowe said that the information gathered from a number of people suggested what worked with Jessie was getting to know her and getting down to her level.
Dr Rowe told the court that the plan would change over time as Jessie’s profile changed it would need updating.
Counsel: You referred in parts of the plan to trauma. You say Jessie had some really difficult experiences in the past which can be traumatising and result in her being sensitive to certain things. Can you explain what you think are potential trauma triggers for Jessie?
SR: Due to various changes in her carers over preceding years, various changes, instances where she thought care hadn’t been appropriate, she hadn’t been supported, she felt unsupported by those caring for her. There was also the potential for her to misinterpret the intention of others, sometimes due to her autism and not picking up on nonverbal communication and her lack of expressive language… Although she was very articulate some [missed a chunk] support from certain providers left Jessie to feel they weren’t looking after her, or wanting to be with her, or wanting to care for her.
Counsel discussed unpredictability and the impact unexpected changes on her routine would have for Jessie, with Dr Rowe. He suggested a clear timetable, on the wall or a phone, could be something that could help guard against emotional dysregulation arising from unpredictability.
Dr Rowe told the court that Jessie had a “very strong moral compass” and was very focused on what was right and wrong, just and unjust so it was important to try and explain why something changed, or was not going to happen. Explain what to expect, perhaps use visual cues, and if any changes what they might look like.
Dr Rowe explained to the jury what a trigger was and said that it might be an argument with someone, feeling tired or hungry, feeling in pain or discomfort. He said the reason they were important to understand was because someone might respond one day differently to another.
He gave the example that if Jessie had a really good night’s sleep and someone miscommunicates something, she may be able to tolerate that, but if she’d had a poor nights sleep and she had a headache at the same time, the miscommunication has a bigger consequence. Dr Rowe pointed out that it is the same for all of us, but it was important for staff to understand the whole picture for Jessie.
Dr Rowe said that this needed to take into account Jessie’s physical health issues too. In response to a question from counsel, he discussed a particular trigger for Jessie relating to her weighing herself and concerns around her body image and weight.
Dr Rowe told the jury that Jessie found it difficult overhearing people talking about things, and he also discussed attachment, pointing out that insecure attachment is not that unusual, it affects quite a lot of the population, but he explained the implications for Jessie to the jury [I missed the detail, apologies].
In response to a final question from counsel for the family Dr Rowe said that ideally a document like Jessie’s Autism, Well-being and Crisis Plan would be reviewed and revisited as time goes by. He said it’s purpose was about having a comprehensive plan, with the most up to date information available, and ideally with Jessie contributing to that.
No questions from counsel for East Sussex County Council or Brighton and Hove City Council.
Counsel for Sussex Partnership asked Dr Rowe to return to an extract of his report which referred to Jessie struggling to regulate her behaviours.
Counsel: You say Jessie has consistently said she does not want to die and has identified a number of aspirations she has for her future. Where would you get that information from?
SR: People supporting her and historical records. When Jessie was more regulated she was able to identify that. She had aspirations.
Counsel: That might feel difficult to understand for the jury. Can you [expand] further?
SR: Think for Jessie when she became very dysregulated and overwhelmed, we talk about going into shutdown or meltdown, she’s not able to think … at that time Jessie might engage in self harm behaviours. In the moment if you asked her are you feeling dysregulated she might say I want to die, but when she was more regulated, was when she was able to talk about aspirations for the future. Slightly different to clients who are not able to see any future. When Jessie was settled she was able to talk about those things. That’s an issue around capacity I think.
There were then several questions for Dr Rowe from the jury.
Juror: Can you just clarify, was the report you’ve just explained accessible by the social workers?
SR: Yes, at the time they’d have been involved in development of it
Juror: So they’d have seen all what you’ve just shared?
SR: Yes, and shared with the providers at the time.
Juror: Did she have an EHCP as well?
SR: She did
Juror: she did?
Another juror asked whether Dr Rowe’s team had any direct intervention in training the staff working with Jessie. Dr Rowe said at the time the plan was created Jessie was discharged from an adolescent unit into a home with Wrixham Care. He said that they provided at least two training sessions for them, talking about the plan and Jessie’s communication needs.
Dr Rowe said the plan was handed over to an independent practitioner because it needs reviewed and updated over time. He said that his team remained involved for a team and supported IMC Locums. Dr Rowe told the court that they had a series of meetings to help transition Jessie to the Sussex Empowered Living, but sadly they withdrew their offer.
A juror asked Dr Rowe about the contents of Jessie’s EHCP and whether Sussex Partnership staff were aware of it. He said that he did not know the exact details but understood the EHCP was used to pay for sensory integration therapy which his team thought would help with core emotional literacy and regulation. He said there were lots of meetings where the EHCP was discussed.
The coroner thanks Dr Rowe and released him.
[The next witness who gave evidence yesterday afternoon, and this morning was Dr Cuthbert, Jessie’s Consultant Psychiatrist at Mill View Hospital. Unfortunately my hands are not holding up well to this much typing, in court all day and reporting all evening, so I’m going to take a break tonight to give them a rest and won’t report on her evidence, or the evidence heard in court today until tomorrow at earliest and I may end up with a backlog and report at the weekend. Apologies for the delay. With thanks to my crowdfunders and those reading and sharing this reporting].