Jessie Eastland Seares’ inquest hearing started this morning in a hotel in Brighton.

Jessie died while she was detained under a section of the Mental Health Act. She was at the time of her death ‘in the care of the State’ so her inquest is an Article 2 inquest (Article 2 being the Right to Life under the European Convention on Human Rights). This means that the coroner, Penelope Schofield, Senior Coroner for West Sussex, Brighton and Hove sits with a jury of eleven jurors (I believe 3 men and 8 women but don’t hold me to that). I’ll only report on what was said when the jury were present.

There are four interested persons: Jessie’s family, Sussex Partnership Foundation Trust, East Sussex County Council and Brighton and Hove City Council.

The first witness to give evidence to the court was Jessie’s mum Kate. Some of what Kate Eastland told the court was similar to what I shared yesterday but we also learnt that Jessie had a passion for animals and Lego, Minecraft, Doctor Who and Sherlock. Jessie always loved food and enjoyed eating out at restaurants from a young age, where Kate explained she was able to behave almost like an adult from when she was a toddler, providing they had drawing materials with them.

Kate told the court:

She [Jessie] was extremely creative, artistic and made intricate models from cardboard and tape. She won the school Easter Bonnet Competition two years in a row. She absolutely loved pottery painting and had a birthday party at the Painting Pottery Café. She always had pets and wanted to adopt every animal she saw on the TV adverts.

Kate told the jury of some of the difficulties that Jessie faced, such as socialising with other children and her anxiety around social situations. She said that if Jessie attended birthday parties or social events she wouldn’t want to leave Kate’s side, long after the age when most parents could escape and leave their children to it.

Jessie was very honest. Not understanding that society does not always see telling the truth as a good thing.

Kate explained how Jessie never wanted to be left alone in the bath, but that she loved water and could swim underwater from a few months old. She would often wear a mask and snorkel in the bath and always had her head under water. Kate told the court that water calmed Jessie, who had daily baths throughout her life, the water calming her mind and soothing her joints.

Kate said that after statutory weighing in school when Jessie was aged 11 she was told that she was overweight (when she was not). Jessie started starving herself and restricting her eating. Kate told the court that this was in addition to Jessie struggling with certain textures of food or food touching on a plate. She said that eating issues in girls should have rung alarm bells as a neurodiversity indicator, but “it was never taken seriously”.

Kate told the court of examples where she thought her concerns weren’t taken seriously. When Jessie was very young concerns Kate raised about her gait and coordination were recorded in her child development records with little interest shown and Kate was told that she would grow out of it and she was worrying too much.

Years later, Kate told the court, she found it difficult to work with many of the professionals involved in Jessie’s care.

I felt we weren’t believed or taken seriously, or perceived as too demanding. This was confirmed when Simon Hellyer from Sussex Partnership NHS Trust told us our expectations for Jessie getting the right care were too high.

Kate told the court that Jessie’s mental health declined as soon as she started secondary school. She was bullied on the bus on day one and Jessie and her parents did not feel confident about the school’s response to the issues she faced. Whilst Jessie performed well academically, Kate told the court, she started to refuse to attend lessons if they were with a teacher who she felt did not care about her.

Jessie’s parents did not allow her access to social media until she was 13. Once they did they had no idea she was accessing harmful content online, but Kate told the court that she believed Jessie obtained self-harm ideas and triggers online, along with pro anorexia content too.

Kate said that Jessie felt rejected and misunderstood by her friends and peers. She was sensitive and picked up on others anxiety, especially adults around her moods.

She became very anxious about almost everything.

Kate told the court that when Jessie’s secondary school applied for an EHCP (an Education, Health and Care plan) for Jessie:

East Sussex County Council declined to even undertake an assessment. This was odd given that Jessie at this point had been detained under section in hospital.

Jessie’s parents appealed that decision and after a short meeting the local authority apologised and rescinded their decision. The resulting EHCP had very little impact on Jessie’s life, Kate told the court, as little of it was delivered.

We felt very much that we had been left to cope on our own to keep our child safe and alive. We felt that services were reluctant to help us. They placed an unfair and unsustainable burden on us as parents, especially Andy.

In addressing the mental health treatment that Jessie received, Kate told the court that she struggled to understand how mental health units were therapeutic. She said staff spent a lot of time in their office on the wards and the units were often noisy and scary environments.

In hospitals, I felt Jessie was chastised for her autistic behaviour.

Kate said that if Jessie started to work well with a staff member, they’d often be moved on to work with someone else to protect them. She said it seemed to her that staff would use restraint, physical or chemical, or isolation to manage patients, rather than less intrusive methods.

It felt that the staff were not sufficiently trained and experienced to support Jessie with her complex needs.

Kate told the court she felt there was a disconnect between mental and physical health services and Jessie’s needs were unable to be met in one place.

Jessie and we were regularly caught in the middle of services fighting with each other over who was, or was not, responsible for her care.

Kate described spending hours in accident and emergency departments waiting for assessments to take place with staff who struggled to support patients with autism, learning disabilities and mental illness. Kate told the court that she would stay with Jessie and would be left responsible for her care.

She told the court that she struggled to understand the approach of East Sussex County Council social services. She described care plan formulations as inconsistent, often reactive to a crisis and not involving Jessie and her parents. She described the council’s decision to place Jessie in independent living as “unrealistically optimistic”.

We could not understand the logic other than it cost less. Jessie could not cope in these environments.

Kate told the court that support in independent living relied upon agency care staff, who were often working multiple jobs and would fall asleep on shift. She described an apparent lack of assessment by agencies of the suitability, skill, experience or training of the staff they employed.

She said that some of the approaches by services appeared to punish Jessie for being unwell, leaving her feeling under pressure to stay incident free. Kate told the court she felt that caused Jessie further distress and harm. She described wards that did not always feel safe, with a lack of staff and resources. She felt some staff were inadequately trained and sometimes lacked compassion.

Kate told the court of numerous reports commissioned to assess Jessie’s mental and physical health, often setting out plans of how to meet her needs.

Many of the reports we found to be accurate and excellently prepared and presented, but then, too often we felt the conclusions were ignored and few of the actions ever delivered.

Jessie had a Hospital Communication Passport, and Kate recalled a Matron who rolled her eyes at her when she asked if she’d seen it.

Kate finished her evidence by telling the jury:

I believe Jessie’s death was preventable and would not have happened had she had understanding, kind and supportive care. It feels like many things need to change to stop these tragedies happening.

Too often services are divided so that they cannot treat the whole person. It feels like lessons from reviews are not being implemented.

From my experience the voice of the carers and cared for are not being heard. Time is spent managing us so that we bother them less.

I experience flashbacks every day about my experiences with Jessie.