“Share my story. Scream it from the fucking rooftops. And know that I love you” Jessie Eastland Seares

Jessie will be turning 21 in a couple of weeks but those who loved her are left to mark that day without her.

Born in Brighton in early December 2002, Jessie was just 19 when she died 18 months ago, on 17 May 2022.

Jessie loved her birthday, and her Mum, Kate, remembers how planning for her birthday usually started the day after the last one. She liked the Christmas tree to be up in time for her birthday in early December.

Before she died Jessie had been planning to return to Paris with her parents on her 20th birthday. Jessie had fond memories of visiting as a younger child and she’d fallen in love with the Eifel Tower. Family holidays each year took them to various places in Europe, and regularly to Devon and Cornwall.

Jessie is remembered as a kind, generous, funny, impulsive, strong, colourful, inspiring, unique and unforgettable activist and young woman. She is also remembered by her friends for her capacity to care for others, even in the darkest of times.

Jessie’s Dad, Andy, described Jessie at her funeral with these words:

“Our dear baby, Jessie, had such a powerful personality that just emanated from her in waves and was extremely infectious and impactive, on everyone she met. She could light a room up in a second, or on occasions, darken the mood, as she struggled with her mood, health, and severe anxieties.

She was so very intelligent, artistic, creative, insightful, funny, cute, sweet, serious and yes, sometimes, quite dark and desperate”.

Jessie loved to go for a drive in the car with Andy, using it to educate her Dad about music. She loved a range of music across genres. Jessie loved scrolling through her Spotify and YouTube playlists.

Kate remembered happier times at Jessie’s funeral:

We gave her the best childhood we could, and she was loved so much. Jessie was Cub of the year and proudly displayed her trophy. She loved dancing lessons and got to take part in a group performance.

She enjoyed holidays, home and abroad, family visits, music, violin lessons, going to parties, theme parks, farms, animal parks, the Pier) especially the tuppenny falls – the amount of plastic crap we won there, only to be put in a box and never see the light of day again!), restaurants, going out for brunch.

I am grateful for those memories and all the photos we have to remind us of the happy times.

Jessie, Andy and Kate were clearly a very tight family unit.

Andy remembered:

She was so loving and thoughtful in many, many ways. She cared so deeply it was often scary for her to think she may lose us. If we were even five minutes late to get to her, she would panic, thinking that we had had an accident.

On the other hand, she seemed so free at times, and the worries disappeared, albeit briefly.

Jessie was Autistic. Andy is Autistic too. He suggests that the deep connection they shared was strengthened through their shared autism, that he often understood Jessie’s logic and shared her thought processes.

Kate describes Jessie as a master-masker. She explains that her parents did not know the extent of Jessie’s struggles to appear ‘normal’ and cope with scary voices by the end of primary school.

Jessie suffered from anxiety and hated loud unexpected noises such as emergency vehicle sirens. She was highly sensitive and was later diagnosed with ADHD and Sensory Processing Disorder, depression and disordered eating.

She also, like so many other young autistic women, was misdiagnosed with Emotionally Unstable Personality Disorder (seemingly the modern day equivalent of hysteria).

Jessie was an earnest child, preferring the company of adults to children her age. She was clumsy and struggled to run, eventually being diagnosed with hypermobility as a result of Ehlers Danlos Syndrome.

Jessie was colourful and vibrant with an enormous capacity to love and care for others. Her mum remembers that she’d regularly give her pocket money to homeless people and she adopted a dolphin called Rainbow.

Jessie’s love of colour was often reflected in her appearance. Andy would help her dye her hair in various colours, and she couldn’t wait to tell people “Daddy did it for me”.

Jessie’s health deteriorated significantly in 2017 and over the next five and a half years she was inpatient in various hospital and community care settings. Andy and Kate remember driving for hours for a visit with Jessie when she was in Wales, Kent, London, Dorset, Hampshire, the New Forest and East Sussex.

In 2018 Jessie was one of the people featured in an undercover expose of the ‘care’ provided by The Priory: Teenage Mental Health Uncovered.

In 2020 when Jessie turned 18 her care was transferred from CAMHS to adult mental health and social care. Jessie lived in Brighton and therefore fell under Sussex Mental Health Partnership Trust.

At the time of her death Jessie was an inpatient on Caburn Ward, a unit for people with acute mental health problems at Mill View Hospital, Hove.

In January 2022 The Telegraph reported that 369 patients of the Trust had taken their lives following treatment in the previous 5 years. They reported that the Trust had been issued with 15 Prevention of Future Death Reports.

Since then there have been further inquests of young women who have died after receiving care at Mill View Hospital, including most recently Rachel Garrett.

Jamie Roberton from Channel 4 shared a couple of weeks ago that a mental health nurse employed by the Trust was caught on police bodycam footage saying Rachel, who was on the edge of a cliff, did not “have the guts” to take her own life. She died moments later.

Andy and Kate raised concerns about the care Jessie was receiving in the community and following her admission to Mill View. They hope that the inquest may answer the many questions they have about what happened to Jessie, including the way her physical health needs were treated.

Andy told those gathered at Jessie’s funeral, that she would tell him that he was the “best Dad ever”. Jessie clearly loved her parents deeply and knew that they had done everything humanly possible to help her.

I’ll finish this post with Jessie’s words. They’re an extract from a note that Kate found on Jessie’s phone after she died:

I’m sorry. I’m so fucking sorry. I can’t believe I’ve done this to all of you. I know I’m loved, but I feel like nobody cares.

Mum, you are special. You don’t give up like me, ok? I love you. I’m sorry I couldn’t be here to see you truly thrive. You do me a favour, ok?

Share my story. Scream it from the fucking rooftops. And know that I love you.

Jessie’s inquest starts on Monday 20 November. It is due to last two weeks. Senior Coroner Penelope Schofield sits with a jury.

5 comments on ““Share my story. Scream it from the fucking rooftops. And know that I love you” Jessie Eastland Seares”

Sharo says:

Sadly the similarities between Jessie and my child are scarily similar. Born the same year, both autistic, both misdiagnosed with EUPD, both failed by West Sussex Partnership NHS trust. The only difference being my child was found just in time, still a slight pulse detected, placed in an induced coma and a long slow path to recovery. Yet still blighted by that wrong EUPD diagnosis , its used against her to deny her treatment for physical issues as there is still so much negative treatment for young women who in reality have autism and adhd but are wrongly burdened with the EUPD millstone around their necks. Carrying it through life with all efforts to thrive and move on , thwarted at every interaction with nhs services (as the notes are read and repeatedly they come to the wrong conclusion) . All because a psychiatrist chose to do a 45 minute consult, purposefully ignored her family regarding an imminent Autism assessment and ADHD symptoms and simply not following protocols of the DSM . The unconscious bias against those wrongly burdened with an EUPD diagnosis is yet another punishment on the road of repeated failings by those whose job it is to “care”. There is a national tragedy fir those who struggle to get this horrific label removed from their records and those that perpetuate this should hang their heads in shame. There are too many lost and damaged lives due to these rushed diagnosis’, not just the patient but also their families are put through pure torture fighting for the right care for their young women.

Jacqueline Madders says:

Hi I am Jacqui madders.
I am now 69x
Most of the years since age 24-29 in hospitals.
I now help others and campaign.
The failures are catastrophic particularly with the lack of understanding of EDS . Hormones and other physical conditions that create MH symptoms.
Let’s get together/teamwork,

Emma Ricketts says:

We met Jessie in East Sussex. My daughter was there too. Also misdiagnosed eupd. Its just SO hard to get the right support for young autistic/ adhd adults. I’m SO angry that the eupd label is put on and once thats on its so hard to remove. I’m thinking of Jessies parents during this awful time.

Natasha Baldrian says:

As a mother of a 16 year old daughter who is still waiting to be assessed, but clearly neurodivergent, to read this is, terrifies me. These unnecessary deaths should not be happening. It is absolutely appalling…
I remember Jess at primary school, a highly intelligent, quiet, sometimes awkward, but always polite little girl. She was a pleasure to teach, as despite her obvious intelligence, she was kind and sweet.
It hurts my heart that she is no longer here because of the systems shocking failings.
This cannot be allowed to continue.

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