Day 1 Jessie’s inquest: Andy Seares

The second witness that the court heard from on Day 1 was Jessie’s father, Andy Seares.

Andy read his statement to the jury and he was giving evidence for well over an hour. I’ve tried to capture as much as it as I can. He described his professional background and told the court that he gave up work in 2017 so that he could care and devote himself to Jessie.

Andy told the court that Jessie had told a counsellor at her primary school that she was hearing and seeing things, but her parents were not made aware of this. Once Jessie moved to secondary school he said significant issues developed.

At the age of 13 when Jessie entered Year 9, Andy told the court, Jessie’s anxiety had clearly escalated and she self harmed on school premises. The school made a referral to CAMHS, Child and Adolescent Mental Health Services. He said that they visited the family at home, and told them that they were only able to support children with mild issues. They advised Jessie to flick an elastic band on her wrist, or use ice on them to distract herself. Andy told the jury that the CAMHS team concluded that Jessie may be autistic and they arranged for her to be assessed.

Andy told the court that Jessie’s mental health difficulties escalated quickly from that point onwards. She was visiting CAMHS at the Aldrington Centre Hove about once a fortnight, and himself and Kate would visit them for assistance and advice as they struggled to know how best to support Jessie.

In my view Jessie was depressed at this point. The CAMHS psychiatrist declined to prescribe Jessie with any antidepressants.

Andy told the jury that he’d go on to the decline in Jessie’s mental health in December 2016 (Jessie had just turned 14 at this point). He said in December 2016 Jessie’s self-harm increased significantly and it was difficult to cope with her in the family home.

We attended A&E departments regularly for help as she felt suicidal and did not feel safe. On 29 December 2016 while on a walk with staff from CAMHS, Jessie absconded. She went to the Brighton Marina wall wanting to jump. Jessie was sectioned under Section 136 of the Mental Health Act by police and placed in the 136 Suite, ironically at Mill View Hospital.

Andy told the court that the Section 136 Suite was very much like a prison. Jessie was placed in a bare room with a mattress on the floor and CCTV constantly filming.

I believe this experience made things worse for Jessie. She refused to come home after she had been there for 24 hours. She wouldn’t speak to us. She pushed us away. I feel like she did not receive the appropriate support.

Andy told the court that after Jessie was assessed by Dr Wardle at Mill View Hospital, she was prescribed antidepressant medication, which did not agree with her, making her symptoms worse. Jessie was discharged from the section at some point before 31 December, he told the court, but she remained on the Section 136 Suite as there was nowhere for her to go.

Andy told the jury that Jessie refused to come home.

This was a very difficult situation as Jessie had nowhere else to go. We were unable to make arrangements within the family. CAMHS confirmed that she was ready for discharge but could not accommodate her in the community. East Sussex County Council said that they were not able to provide accommodation.

We felt that we were being blamed for Jessie’s condition and presentation. Both authorities were trying to force us to force Jessie to come home. We felt terrible but there was nothing we could do.

After a while CAMHS and East Sussex County Council decided to place Jessie with an emergency foster carer in Hastings. Andy told the court that they could not understand how this would be appropriate and that Jessie’s parents felt she should be detained in hospital for assessment.

We pleaded with them not to do this as we foresaw that it was not going to work. We were scared that Jessie would die that night as we believed she had made a suicide plan.

Andy told the court that staff reassured them that the foster carer was very experienced with dealing with children with mental health difficulties. They later learnt that the foster carer had been given very limited details about Jessie and were not informed of how ill Jessie was. Upon hearing a loud thump at midnight the carer went immediately to Jessie’s room where she had self harmed [in line with Samaritans Guidance I’ll not be reporting details of Jessie’s self harm].

Andy told the jury that Jessie was transferred to Conquest Hospital at about 2am on 1 January 2017, but they were not informed of this until 11am the next day when they contacted social services to see how things were going for Jessie with the foster carer. Jessie’s parents rushed to her bedside, where staff reassured them that they would not allow Jessie to leave because she was far too ill. The court heard from Andy that Jessie was assessed and detained under the Mental Health Act. When they went to collect Jessie’s belongings from the foster carer they told him that they would never have agreed to take Jessie in if they’d known the full picture about how ill she was.

This event marked the start of a five and a half year struggle and battle and fight with East Sussex County Council, the hospital system [didn’t catch] … to get the right support for our daughter, which we never achieved.

Andy apologised for the length of his statement before continuing. He told the court that on 2 January 2017 Jessie was transferred to the Priory Hospital in Ticehurst, East Sussex, where a nurse told them that Jessie presented as very obviously autistic.

This, he said, contradicted the views of CAMHS. He told the jury that Jessie refused to see her parents. They remained in contact with the hospital daily and after a week or so Jessie started to eat and drink, and she liked some of the patients. After a couple of weeks Jessie agreed to see her parents and they visited two to three times a week from then onwards.

Andy told the court that they noticed Jessie was copying what other patients were doing and was learning new ways to self harm. As Jessie’s self harming escalated she was moved to the high dependency unit at the hospital. Jessie was prescribed new medication which helped her to feel a lot better and she was formally diagnosed as autistic at Priory Ticehurst.

In August that year Andy attended a meeting where staff announced that Jessie was ready for discharge. Andy told the jury that neither staff from CAMHS or East Sussex County Council has been consistently attending the reviews with the hospital and there was no community support plan in place for Jessie’s discharge. He said there was no education, training, meaningful activities or aftercare in place for Jessie and she clearly could not return to her high school.

We were shocked about the sudden change of plan. Jessie was returned to our home. We were very surprised by her discharge.

Andy said that they did not know what processes should have been followed to prepare for Jessie’s discharge but they had no support at home and her mood started to go downhill very soon after she was discharged, and her self harm and suicidal ideation escalated.

Andy told the jury that they asked for support at home from CAMHS as they felt unable to keep Jessie safe.

Unfortunately our calls for help led to disagreement and protracted arguments. Things became difficult at home and Jessie ran away.

Jessie would self harm, her sleep was erratic, Andy told the court that she needed 24/7 supervision. Jessie would take herself to A&E as she did not feel safe.

On 23 October 2017 Jessie was placed in Chalkhill Hospital in Haywards Heath. Andy said that the ward felt very regimented and rigid. Patients were expected to be up by 08:30 and were not permitted to return to their rooms until 10pm. When they visited they were restricted to one visiting room, her parents were not allowed to see Jessie’s room or have a sense of her living space.

We learnt that the other patients and their parents called the hospital Chalk Hell.

Andy told the court about an occasion where Jessie suffered a seizure, collapsing and urinating on the floor and unable to get up again. The staff would not help Jessie as they had decided she was faking the seizure. Jessie used her mobile to call an ambulance and when they arrived, the staff refused to allow the paramedics access.

As far as we were aware this was the first ever seizure she had had. This event caused our concern about the training staff received to look after autistic patients.

Jessie needed rest time during the day which was not permitted at Chalkhill. Andy told the jury that it was not a suitable environment for Jessie, due to her sensory processing disorders and autism. Jessie told her parents that she was placed in isolation to encourage her to comply.

Andy told the court that he became aware that the unit did not want Jessie to remain there due to her autism, and they were making moves to send Jessie to a psychiatric intensive care unit (PICU) in the north of England. Once he knew the name of the unit, Andy contacted the hospital who were unaware that Jessie was autistic. Her referral was not accepted by them as they believed a PICU would “be a harmful environment for an autistic child”.

Jessie’s parents suggested a return to Priory Ticehurst who eventually, Andy told the court, accepted her readmission. Jessie willingly returned to Ticehurst but reported lots of issues to her parents, such as children being dragged by their hair, and children left headbanging for hours without support. Andy said that they had thought that Jessie must have been exaggerating about the events, but it turned out an undercover reporter was working at the hospital and filming, and in April 2018 they were contacted for theirs and Jessie’s consent for her to feature in their documentary. They all agreed and Andy told the court, everything Jessie had said was true, further undermining their confidence that psychiatric services could provide appropriate care for children.

Whilst Jessie was at Ticehurst for the second time the CCG commissioned Dr Judy Eaton to undertake an in-depth autism and occupational therapy assessment and a Pathological Demand Avoidance analysis with Jessie.

Dr Eaton produced a report and support strategy. Sadly we found that Ticehurst would not use the assessment or cooperate with Dr Eaton.

Andy continued, telling the court that the hospital requested Jessie’s parents attend a meeting on 8 March 2018, which they believed to be a care update meeting.

At the meeting the ward manager confirmed that they do not support children with autism. She told us that they would never accept an autistic child again. She informed us that Jessie was to be transferred to a psychiatric intensive care unit within the hour, in Bury, near Manchester.

Andy described their complete shock. They objected to the transfer and were told they had no choice. They had made plans to spend time with Jessie after the meeting and instead had just an hour to say goodbye. Unsurprisingly Jessie was extremely distressed and upset.

Andy told the court that they were later informed Jessie had been dragged into an ambulance late that night, she was restrained and arrived at Cygnet Bury at around 3am.

We felt that this was entirely inappropriate and caused her trauma. In the morning of 9 March 2018, a psychiatrist from Cygnet Bury called us to ask why Jessie was there.

He observed that she was not violent and presented with her autism and challenging behaviour. He strongly advised that we should request that she is transferred out of the unit.

He was concerned that there were violent males on the ward and he advised that Jessie would not be safe.  He suggested that we collect Jessie. We drove to Bury the following day.

Andy told the court that they stayed for two nights in a bed and breakfast and visited Jessie on the restricted two hour visits that were allowed. Jessie was only at Cygnet Bury for 4 days, before she was discharged into her parents care and came home.

When they complained about this event, Jessie’s parents were told that Cygnet Bury had not been provided with all of the details about Jessie by Priory Ticehurst. Priory Ticehurst denied that and said they had provided all the details. Jessie’s parents requested a formal review by NHS England and received an apology.

We were now certain that Jessie needed a specialist placement with staff who understood and could support people with autism, post traumatic stress disorder and the resulting behaviours that challenge.

Andy told the court that Jessie was at home for about two weeks, which was very difficult. There were several trips to A&E due to Jessie’s self harming and suicidal ideation.

Jessie often felt unsafe and wanted a place where she would get the support needed.

Andy was in touch with the South East NHS England Specialist CAMHS Manager, Paul Savage. He made a one off arrangement for Jessie to be admitted to a partially decommissioned ward at Cygnet Hospital in Godden Green. The hospital was intending to reopen having been closed due to safeguarding difficulties.

Andy told the jury that Jessie had a very good relationship with the ward manager, who he described as ‘lovely and tried hard to care for Jessie’. He said that Jessie appreciated her genuine care. The hospital employed a large number of agency staff and there was an inconsistent approach to care. Staff often fell asleep when on duty and without support, Jessie continued to self harm, especially at night.

Andy said that a Cygnet psychiatrist called Dr Paul Monks suggested a move to a low secure hospital called Kent House in Orpington which was run by Priory. Andy told the court that they didn’t know how a low secure hospital operated as security wasn’t low at all, in fact it was quite high “like a prison”. Dr Nelson, a psychiatrist at Kent House, said she knew of a medication that would really help Jessie and that “she had been able to turn around similar complex autistic young people”. They agreed Jessie’s next move on that basis.

Jessie moved to Priory Kent House on 1 June 2018 and Andy said that she was in there for 10 months. Andy told the jury:

We did not find the staff easy to work with. The security was very high and we were not permitted near the living areas. Visitors were not allowed to take mobile phones, watches or anything into the hospital. The children were only allowed four pieces of toilet roll at a time, and many did not have their own clothes. We met with Jessie in a cold empty room with just a couple of chairs. We were not allowed to take anything into that room.

Dr Nelson prescribed the medication she had promised, which Andy said did seem to help Jessie. Jessie was given leave to stay in a family visit bungalow on site and her parents were able to take her to Bromley and other places in Kent for trips out.

Jessie told us about issues relating to the abuse of patients, especially from the night staff. Jessie disclosed she was threatened with exorcism by night staff. She told us that some of the children were being told that they had demons and were possessed by evil spirits. Jessie later revealed that she was also sexually assaulted on that ward.

Andy told the court that at the time they were in discussions with East Sussex County Council about a placement for Jessie on her discharge. They were keen to follow what Dr Judy Eaton had suggested, that Jessie attend Southlands School, a specialist residential school in Lymington Hampshire for children with autism.

We thought this was a good idea as Jessie had been out of education since 13 years of age. We hoped this would let Jessie feel cared for and supported, with something to do.

Andy told the jurors that after considerable pressure funding was put in place and Jessie started at Southlands School on 22 April 2019. Jessie liked most of the staff and initially things appeared to go well. He said they had knowledge and skills around supporting autistic boys, but he felt less so with autistic girls, and some of those placements had broken down. Andy said that Jessie was pleased to be out of hospital.

The psychiatrist at the school wanted to change Jessie’s medication, which her parents were concerned about, worried that it would be disruptive and impact on her placement.

After the psychiatrist told Jessie that she might become infertile because of the medication, Jessie stopped taking the medication immediately. We were assured that Jessie would not lose her placement.

A few days later, Jessie [self harmed] and was admitted to Poole Hospital. Southlands School refused to take Jessie back as they could not meet her needs.

Andy told the court that social services did try to offer the school additional support but they would not accept any additional help and closed Jessie’s placement. Jessie was distraught.

Jessie was placed on a geriatric ward at Poole General Hospital, where she remained for 6 weeks in August 2019. Andy told the court that the staff there were good and caring, and Jessie had positive support from the local CAMHS team. Hospital management did not want a medically fit, young, dysregulated teenager charging around the place, and everyone was agreed it was not an appropriate place for Jessie.

East Sussex County Council commissioned Wrixon Care to provide bed watch support to Jessie while she was at the hospital and Andy told the court that some of the staff were caring despite not being trained to support autistic young people.

Poole Hospital management were exasperated with the delays in moving Jessie on. We agreed to take Jessie to Centre Parcs in Longleat in September 2018 for a minimum of two weeks. East Sussex County Council were still working on finding a placement and they agreed to send a mental health nurse to help us.

We collected Jessie from Poole Hospital and took her to Centre Parcs. The mental health nurse supplied was from an agency and she really did not like Centre Parcs. She liked London but did not like Center Parcs. She was unable to communicate effectively with Jessie. We were providing support to Jessie and the nurse as well. She only stayed for a week.

Wrixon Care joined for the second week and provided much needed support. Kate joined us at weekends, as she was working during the week. This period was not without very challenging issues, but I mainly have very good memories.

Andy told the court that after the two weeks at Center Parcs ended East Sussex County Council had still not sorted accommodation for Jessie so she was transferred to an emergency placement near the Brecon Beacons in Wales. This was a sports activity centre and Andy said that the activities and ethos were not appropriate for Jessie at all, but “overall Jessie said this was the favourite place that she stayed at”. Jessie stayed for six weeks before being transferred to a Fairways Property in Gosport on 4 November 2019.

Jessie was in a house on her own in Gosport with one carer who was on duty 24 hours a day.

She was a long way from home. We thought the plan was not going to work. We felt that Jessie was not ready for semi-independent living. She could not cope on her own.

We felt that one carer would quickly become exhausted.

One worker left after just a week.

Andy told the court that he provided a lot of support to the manager, who found it exhausting looking after Jessie. Andy regularly visited and took Jessie out and Jessie returned home for some weekends.

On the 27 December 2019 we were asked without any notice to pick up Jessie immediately as they were closing the home. The manager felt it was unsafe for her workers and for Jessie, who needed 24 hour care, ideally two to one care. Unfortunately there was nothing that we, nor the other services could do, at such short notice.

Jessie was transferred to a Children’s Home in Southampton on 28 December 2019. Jessie told her parents she was being bullied and she did not like the staff.

On 30 December 2019 Jessie was admitted to Southampton Hospital as she wanted to be seen by the mental health team. Jessie refused to leave hospital and return to that home.

Andy told the court that he contacted East Sussex County Council who confirmed to him that they intended to transfer Jessie to a property in London provided by an independent living provider, called Netpex. Andy felt it would not meet Jessie’s needs.

She arrived at night with Wrixon staff. The property had electrical failures and was not ready to be inhabited. She was transferred to another Netpex home in London for that one evening. 

Jessie was returned to the property the following day. We went with her and found the property was dirty, dangerous, and uninhabitable. Wrixon Care staff refused to support Jessie there, to even settle her in the property as they felt it was unsuitable and unsafe. The taps did not work and there was no hot water. No boiler working.

We were left to decide what to do.

Andy told the court that in discussion with a manager from East Sussex County Council it was agreed, whilst another plan was worked out, they would bring Jessie home with Wrixon Care staff supporting them. He commented that because it was Christmas time, they had to deal with the emergency duty team, and it was impossible to get anything else arranged.

Andy told the court that from 4 January 2020 their home became an unofficial care home. They were assured within a couple of weeks Jessie would be rehoused. Jessie did not feel safe at home. She had intrusive thoughts and hallucinations and thought she would do something bad to herself or her parents. There were two staff from Wrixon Care at their home from 8am until Jessie fell asleep at night.

Andy described how Jessie’s physical health and mobility were deteriorating. On 17 January 2020 he brought her a wheelchair. He told the court the situation at home lasted around six months and that their home was no longer their home. He described how some of the care staff did not respect their home or how they lived, and they were cleaning up after carers. Jessie remained seriously unwell with suicidal ideation and self harm. Kate became unwell and was admitted to hospital with a serious infection and could not face returning home afterwards, staying in a bed and breakfast for a number of weeks to try and recover.

I found this hard as I was now coping with Jessie and with the carers on my own. Jessie missed her mother. We were all almost at rock bottom.

Andy told the jurors that some of the carers refused to support Jessie in the bathroom and on one occasion Jessie had a seizure in the bath and he had to burst into the bathroom and drag her from under the water.

Myself and another care worker had to remove the water from Jessie’s lungs.

There were many other traumatic events.

Andy told the court that East Sussex County Council moved Jessie to supported living accommodation close to their home in June 2020. This was in Lewes, with Wrixon Care providing support. He described Wrixon Care as being “generally ok but not specialists in autism”.

Jessie’s health deteriorated and she ended up back in Chalkhill Hospital in August 2020. She was placed in the Section 136 Suite with Wrixon Care staff providing two to one care. Jessie was kept in an isolation room for eight weeks.

Jessie was sleeping on a plastic mattress on the floor and only eating off a tray on the floor. We raised these concerns with the Care Quality Commission. After pressure, a proper bed and a small table was provided.

Andy told the jury about Court of Protection proceedings that were brought in August 2020 when East Sussex County Council applied to the High Court for a Deprivation of Liberty Order for Jessie. He said he did not recall the local authority discussing this with them, but he remembered Wrixon Care managers saying that they needed to be able to restrain Jessie to stop her from absconding, and to keep her safe.

He told the court he was broadly supportive of the courts decisions, Jessie was very much against restrictions, Wrixon Care felt they didn’t go far enough.

When Jessie turned 18 the local authority applied to the Court of Protection to continue the restrictions, but when Wrixon Care ended their care package, the council struggled to find care providers who would work with those restrictions in place. They therefore decided to remove the restrictions in May 2021.

Andy said that Wrixon Care felt unable to manage Jessie without the authority to restrain her and they were wanting more support from mental health services. They were not happy to return Jessie to the supported living accommodation in Lewes.

In October 2020 additional support was agreed to be provided by a mental health nurse, employed by IMC Locums. Andy told the court that Wrixon Care and IMC Locums clashed about how to provide care, and this confused Jessie. She found three to one support too much. It was unclear to Andy what value the mental health nurses were providing.

As Jessie approached her 18th birthday (in December 2020), adult social care at East Sussex County Council became more involved. They informed Andy that they thought Wrixon Care were unable to provide suitable long term support.

On 15 December 2020 Jessie was admitted to hospital following an overdose.

Wrixon Care staff returned Jessie to her home and then stopped providing support without notice. Andy told the court that he understood that decision was made as Wrixon felt unable to provide a safe service, and the arrangement in place was causing them reputational damage.

Andy told the court the sudden termination by Wrixon Care created a crisis for Jessie.

The local authority then contracted IMC Locums to take over the support that Wrixon Care had been providing. Andy told the court that East Sussex County Council did not discuss the change in care plan with them.

I have carefully reflected on the care provided by IMC Locums and in contrast to Wrixon Care in my view they did not understand Jessie or her needs. They did not organise prescriptions, which required me to obtain emergency medication. They were unable to undertake even basic tasks like changing light bulbs or hoover bags. They didn’t deal with any rubbish or recycling. They were unable to cook for Jessie or provide her food. They didn’t take Jessie anywhere. The house was often dirty and unclean. I took responsibility for almost everything. The carers had arguments between each other. I had to buy bin liners, toilet rolls, washing powder, cloths etc for everyone. I had to take Jessie to all appointments or for outside activities. I needed to visit Jessie daily, almost daily.

Andy told the court that the placement broke down and Jessie was admitted to the Royal Sussex County Hospital for just short of two weeks, before being transferred to Langley Green Hospital in Crawley on 11 February 2021.

Andy said they were told Jessie was going to the psychiatric intensive care unit, Amber Ward, but when Jessie arrived she was placed into the Section 136 Suite because there was no bed available. They were then informed that the psychiatric intensive care unit was not the right environment for Jessie. She remained in the Section 136 Suite for over 3 days before being moved to Coral Ward.

Andy told the court of some of Jessie’s experiences at Langley Green, including being allowed out unaccompanied with another patient, being encouraged to get drunk, Jessie had her belongings stolen and did not know whether she’d been sexually assaulted. It was left to her father to take Jessie for HIV testing and sexual assault investigation because Langley Green wouldn’t support it. Andy received an apology from the ward manager about the incident. The patient was later charged with assault and theft but Jessie was informed by the police some months later the patient had died.

Whilst Jessie was in Langley Green a discharge plan was being developed with Sussex Empowered Living who were due to take over Jessie’s care in the community.

The plan was that Jessie would move out of the hospital on 8 July 2021 to live in a flat in Kemp Town. Jessie signed a tenancy agreement. We bought lots of furniture, which is still in our garage at our house, even now it still is.

There was a lot of planning and hope.

On 7 July 2021, Sussex Empowered Living cancelled this agreement.

On the day before the move Jessie had a seizure in the Sussex Empowered Living offices and as a result, they decided they could not take Jessie.

Jessie was distraught. We asked Langley Green to put Jessie on suicide watch.

Andy told the court that night IMC Locums did not turn up at Langley Green to provide Jessie with support and she self harmed.

After the discharge plan broke down Jessie’s parents met with Leon Gooding, who was Head of Mental Health at the council. He said he was concerned Jessie had not received any therapeutic support for her trauma. He suggested she be admitted to a Personality Disorder Clinic. Andy told jurors at the same time Langley Hospital suddenly suggested Jessie’s primary diagnosis was Emotionally Unstable Personality Disorder. They back tracked when Jessie’s parents challenged that and confirmed her primary diagnosis was Autism, however they refused to remove the EUPD diagnosis from her records.

Andy said that this greatly distressed Jessie.

They arranged for assessments by various personality disorder clinics all of whom refused to take Jessie because she was autistic and had considerable physical health issues.

On 5 August 2021 Jessie was moved to Woodlands Hospital in Hastings, as there was nowhere else for her to go, Andy told the court. He said that communication between the two hospitals was extremely poor. Woodlands Hospital did not have a room for someone with a wheelchair and so Jessie was refused her wheelchair on the ward on the “basis that she did not need one”.

Andy said that Jessie’s psychiatrist, Dr Warner, seemed interested in Jessie’s care and listened to her wishes and feelings. Jessie liked her.

Dr Warner increased one of Jessie’s medications and said that she thought Jessie was presenting as having chronic fatigue syndrome and fibromyalgia.

Dr Warner told us that she was concerned about prolonged hospital stays without adequate discharge plans.

Dr Warner did not agree that Jessie needed a stay in a personality disorder unit. I recall that Dr Warner and Leon Gooding had a huge argument about this difference of opinion during a meeting.

Andy told the court that Jessie came home for a weekend visit on 23 August 2021 and refused to return to Woodlands Hospital. Andy took her to a hotel in Eastbourne for the night as the local authority could not help them.

I presented Jessie to Adult Social Care the following day as a homeless person as Woodlands Hospital had by then discharged Jessie when she did not return.

East Sussex County Council found temporary accommodation for Jessie in a house in Brighton.

Andy told the court that unfortunately it was to be staffed by IMC Locums. He said it was in poor structural and internal repair, on a main busy road with no parking, but it was better than a hospital.

He said that there was no transport for Jessie and the staff did not take her out. Andy said many of the staff had poor English and did not understand autism.

As before, IMC Locums staff thought they were only there to provide support when Jessie asked for help. They did not see themselves as carers. Most would not or could not cook meals for Jessie not even scrambled egg. This put me in a very difficult position, as Jessie needed personal care and support with cooking and meals. I went into the property for a minimum of 7 hours a day, usually for around 5 days a week. Kate provided support on the other two days.

Andy told the jurors that Jessie took over two rooms upstairs in the house, one she used as her lounge and the other, a bedroom. She had to use a commode as there was no toilet upstairs.

On a number of occasions, I found Jessie lying in a urine-soaked bed. I would change the bedding, empty the commode and support Jessie in the bath. It was not safe for Jessie to bathe on her own due to seizures. Jessie did not have the motivation to wash herself and suffered joint pain and fatigue. She often wanted her hair washed and dyed.

I witnessed numerous arguments between IMC agency staff, and on occasions with Jessie. It is my firm belief that Jessie was both verbally and, sometimes, physically harmed by the staff. 

We made numerous complaints and raised serious concerns with East Sussex County Council and IMC Management but we feel our concerns were not taken seriously.

Andy then showed a number of photographs to the jury of some of Jessie’s injuries and the condition of her living accommodation.

Andy went on to say on one occasion they found an IMC nurse was smoking cannabis in the house, which they reported.

He moved into the house and it took four weeks for us to get him out. In the time it took for him to go, we believe that he was unkind and abusive toward Jessie. He used the home as his own. He did his own cooking, usually fish which Jessie couldn’t stand the smell of, used the shower and towels, and used the washing machine for his own clothes. This made Jessie just retreat to her rooms on most occasions because she was scared.

Andy told the court that in November 2021 a female staff member joined the team and for the first time the house was being cleaned. She told Andy she felt the other staff were neglectful and abusive and several IMC staff members were removed from Jessie’s care package following her joining.

Andy listed failings of care in that placement such as staff sleeping at night and Jessie leaving the house despite being on 2 to 1 and getting to the sea with suicidal intent. The police returned Jessie to the house and staff did not report it, Andy said that IMC management said they were not aware of it.

It was at this point that IMC staff reported to East Sussex County Council that Jessie kissed me when I arrived and left the house. The workers thought that a father should not kiss his adult daughter, or hug her, nor support her with bathing. Jessie would not allow some female staff she didn’t trust to bathe her. She would ask me to do it or her mum.

On 17 January 2022 at Hill Rise Centre, Newhaven, I drove Jessie to a one to one session. At the end of the session, Ruth Nathan, a Lead Practitioner invited me into a meeting with Jessie. She told both of us that there was a suggestion that we were having a sexual relationship. I was informed I should not bathe Jessie and was warned not to provide care for Jessie.

Jessie became extremely distressed. She started smashing up the room. The police arrived at the centre and we were all interviewed. We were informed by the police that the allegations by the carers were not being pursued. The police indicated to me that they were concerned about the way in which this whole situation was handled.

Andy told the court it was about this time that Simon Hellyer of Sussex Partnership NHS Trust informed Jessie’s parents that their expectations of care for Jessie were far too high. He told them to stop complaining or they would lose all the staff.

We were confused by his advice in the context of approximately fifteen safeguarding referrals that had been raised by ambulance teams, the police and us in regards concerns about her care and safety.

Andy told the court that they were still awaiting a change in care agency as they had been informed that IMC Locums were only temporary, as it was understood there were problems with IMC Locum’s services.

In January 2022 Jessie had an infection in her arms, and in early February 2022 she was admitted to Royal Sussex Hospital for help with gastric problems including stomach pains, vomiting and seizures. Jessie was transferred to the Infection Control Unit for approximately three weeks to treat thrombosis and cellulitis in both of her arms.

Andy told jurors that on 18 February 2022 Jessie was detained under the Mental Health Act by Dr Sparks. He said that during Jessie’s admission at the Royal Sussex staff and management raised concerns about ICM Locums staff and on 24 February 2022 they were immediately dismissed, leaving at 14:30 that afternoon without any further explanation or notice.

This caused significant distress for everyone. IMC Locum’s contract was withdrawn and we never saw anyone from IMC again, unfortunately until Mill View.

On 4 March 2022 Jessie was transferred to Mill View Hospital as it was decided that she was physically well enough. We did not agree with that assessment.

Andy told the court that before Jessie moved to Mill View he called staff at the ward on more than one occasion. He explained to them about Jessie’s complex physical health issues, her autism, her seizures and her ADHD. Andy said that they were concerned Mill View would not be able to meet Jessie’s needs but they reassured them that they could look after Jessie.

Despite this, Andy said when Jessie arrived at Mill VIew the accessible bathroom was being used as a store room for PPE and equipment and it took them two weeks to clear it so that it was usable.

Andy said that at first things seemed positive, and the staff seemed caring, and the psychiatrist removed Jessie from her section immediately on 7 March, which meant Andy and Jessie were able to go out together.

After a couple of weeks, Jessie’s presentation started to deteriorate. It started to go wrong from the 14 March 2022. Staff would not support her to go to a poly-clinic appointment which was on the same site.

I was excluded from ward rounds. I arrived at the hospital and was left sitting on a chair outside the room for almost an hour. I was not spoken to or given an explanation as to why I had been offered the opportunity to attend ward round and then was refused. I could hear Jessie was distressed in the room but did not hear what was going on. I understand now that there were arguments around medication.

Andy told the court he was refused access onto the ward on 16 March 2022 even with a clear covid test, because they had two patients now with covid. He said this caused huge amounts of distress to him and to Jessie.

On 27 March 2022 Andy and Jessie both tested positive for covid. Andy told the court that he understands staff refused to support Jessie once she tested covid positive because they wanted to protect themselves. Which caused yet more distress to Jessie, especially as Andy was not allowed in to see her.

Andy told the court that Jessie had a seizure in her wheelchair on 30 March 2022, damaging the chair. The hospital, he said, then lost her chair, so Jessie was without a self propelled wheelchair until the replacement Andy ordered arrived two weeks later.

Andy said that in April 2022 he was concerned about the number of orders Jessie was making online, with parcels being delivered at the hospital and at home. He raised his concerns with staff as Jessie had spent all her money, approximately £6k in two months.

No action was taken other than signposting her to a money advice person to advise Jessie about budgeting.

Jessie started to buy other patients presents and was buying books on mental health and autism for the staff to read.

Andy told the court about instances of Jessie self harming in Mill View. When he queried why her observations had been reduced he said he was told that they “don’t do intensive support here”.

Jessie was experiencing seizures whilst at Mill View. One of her medications was changed to a new medication, Andy said, but the new medication was not in stock so Jessie had to go cold turkey and wait over the Easter holidays until she could be given her new medication. Andy told the court that Jessie did not want or agree to this medication change.

At this time Jessie set light to a blanket, after a period of not receiving her medication. Andy told the court he was concerned about the staff response which was to suggest Jessie was violent, aggressive and an arsonist and a forensic unit was suggested on a ward round.

Andy told jurors he felt staff were trying to label him as an unsafe person and they accused him of supplying patients that he did not know, with lighters. He later received a verbal apology from the ward manager for these allegations.

Andy told the court that Jessie remained restricted in the hospital until 10 May 2022 when he was suddenly allowed out with Jessie. Jessie had requested she was moved to general observations as she had “got a job in Bristol”. Jessie had joined a job agency and been offered a role in Bristol.

This struck me as bizarre and wholly unrealistic.

The hospital staff appeared to encourage this, even though to me she plainly did not have the capability to work.

Andy told the court he did not feel that any of his concerns were taken seriously by the nurses.

On 13 May 2022 Jessie was very distressed and talking about her plans to work in Bristol, and wanting to goto Paris for her birthday that year. Jessie emailed the ward manager asking for more support because she felt the support she was getting was not sufficient. Andy said that he raised concerns about Jessie being on general observations and the nurse in charge responded “well, we will see”.

On 14 May 2022 Jessie self harmed at night on the ward. She asked Mill View staff to help her but they refused, so Jessie called 999 and had a text conversation with the 999 operator about wanting to die but having the human right to get support. Andy said that the jury have the 999 texts and can see that the doctor at Mill View only agreed Jessie could have an ambulance at 10:11pm. He told the court he does not know what really happened from there.

On 15 May Jessie seemed very down in mood, to Andy, and he told the court that she was struggling to function. On 16 May Jessie was again in distress. He described staff being late for an activity with Jessie and it then being interrupted by a social worker visit, which caused Jessie distress.

Andy told the court that throughout Jessie’s time at Mill View he was frequently left to de-escalate Jessie by himself, and he was doing that again on 16 May 2022. He told the court he left Jessie in calm spirits that day, confirmed he’d return early on 17 May 2022 to take Jessie out. She told Andy that she loved him.

Jessie died in the early hours of 17 May 2022.

Andy told jurors that after Jessie’s death, on 18 May 2022, himself and Kate visited Mill View to meet the psychiatrist and senior ward staff and they were taken to Jessie’s room.

It had been left as it was when she died. It was incredibly distressing. We were overcome with grief. Kate screamed out in anguish. There was still some blood left on the floor. A shoe, which had been there when I left on the evening of 16 May 203 was missing and was later found in the nurse’s office. We have not been given any explanation for how or why the shoe got there.

Andy finished by telling the court that since Jessie’s death he had been informed by other patients who were at Mill View with Jessie, that Jessie was terrified on the night of the 16 May 2022. That there was lots of screaming and upset from Jessie and at 10pm that night Jessie was not asleep, but was in another patient’s room scared stiff.

The coroner thanks Mr Seares for his evidence. Court then adjourned for lunch.

I’ll report the afternoon evidence tomorrow. With thanks, as always, to my crowdfunders who support and enable my court reporting. I’m no longer on social media, so if you read this far, please share this post, and its contents with people you think may be interested.

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