Parents of Saltdean teen vow to campaign in her memory

An inquest jury concluded that “systemic failures” led to the death of Jessie Eastland Seares who was found unresponsive with a ligature around her neck at Mill View Hospital in Hove.

The 19-year-old was found by staff during an hourly observation in the early hours of May 17, 2022.

Despite a doctor and paramedics performing CPR Jessie, from Saltdean, was pronounced dead at the scene.

Delivering a narrative verdict, the jury at the inquest at the Leonardo Hotel in Stroudley Road, Brighton, said “systemic failures” in health and social care caused Jessie emotional distress that led to "regular bouts of self-harm" and ultimately her death.

Jessie was autistic and had a history of complex physical and mental health issues and self-harm.

Jessie Eastland Seares with her dad Andy and mum Katherine (Image: Submitted)

She had been diagnosed with dyspraxia, Ehlers Danlos Syndrome, ADHD (attention deficit hyperactivity disorder), sensory processing disorder, depression and anxiety and disordered eating.

Jessie had been detained at the Caburn ward, a unit for people with acute mental health issues which forms part of the Sussex Partnership Foundation Trust, under Section 3 of the Mental Health Act since March 4.

Shortly before her death she had been living in temporary, emergency-supported accommodation, but then was admitted to the Royal Sussex County Hospital for physical issues, weeks before she was admitted to the Caburn ward.

Throughout the hearing the jury heard there is a lack of community provision for the care and treatment of autistic people nationally, which often leads to many experiencing unnecessary and inappropriate admission to inpatient facilities and A&E attendances.

Following the conclusion handed down on December 1, coroner Penelope Schofield said she will be making a prevention of future death report to the Secretary of State for Health and Social Care, saying that the lack of facilities available “contributed to Jessie's death” and that changes need to be made.

It was heard that East Sussex County Council had struggled to find a suitable permanent placement for Jessie to meet her needs.

The local authority said it had approached 30 providers but to no avail.

Jessie’s parents Andy Seares and Katherine Eastland spoke of their devastation at their daughter’s death and their determination to enact change.

The pair raised concerns throughout Jessie’s life about her treatment and need for personal care.

“We are absolutely devastated that after fighting so hard and for so long to get the right care for Jessie, that the issues and concerns we raised time and time again ultimately contributed to her death,” they said.

“Jessie was a courageous person who struggled with her physical health and was not understood by authorities.

“Because of her high level of intelligence, she was often deemed to be far more capable than she was and that meant that services failed to take her needs seriously. While we know that she was in considerable pain and distress, the very people who were supposed to help and support her often suggested she was simply attention-seeking.

“Multiple services saw us as parents to be ‘managed’ rather than working in partnership with us and sadly we know this is a very common experience for parents and carers in similar situations. Even throughout this inquest we felt that the local authorities continued to disrespect us rather than learn from their own failings.

“We have lost our precious child and nothing will ever bring Jessie back.

“However, we will continue to work with other families and organisations, including SPFT, to demand effective care provision, especially for autistic girls and women, and to hold this failed system to account.”

Andy and Katherine drew attention to the 2022 LeDeR report, which seeks to investigate and learn from the avoidable deaths of people with a learning disability and autistic people in England, which was published during Jessie’s inquest.

“Mental health has been a third-class service for decades,” they said.

“Leaders know exactly what is needed but things are getting worse not better. The Transforming Care programme has failed.”

The family’s lawyer, public law expert Chris Callender from Sinclairslaw, said that a lack of appropriate services for people with complex physical, neurodevelopmental and mental health needs means that people with similar needs to Jessie would be failed.

“It is imperative that action is now taken to improve the care that is available to people with complex neurodevelopmental, mental and physical health needs,” he said.

“That means a properly funded system, with training and adequate remuneration for staff and suitable accommodation for these vulnerable people.”

Jessie’s family were also supported by the charity INQUEST at the hearing.

Luana D’Arco from the charity said: "Jessie was a young autistic woman with complex physical and mental health needs, in need of specialist care and support.

“Her story and those of so many other young women, must be the wake-up call that leads to proper change and investment in appropriate person-centred, individualistic mental health and autism support.”