Jessie

After a long, difficult labour, Jessie was born via emergency C-section, on the 6 December 2002. She had jaundice and a very prominent sunken chest. The doctor called this ‘pectus excavatum’ and that it was nothing to worry about. We later learned that this was a key indicator of connective tissue disorders, including Ehlers Danlos Syndrome. From a toddler, Jessie really struggled to walk and had an unusual gait, with severe in-toeing. Jessie fell over whenever she tried to run. She tripped over her own feet. These concerns were discussed and are noted in Jessie’s child developmental records. There was no professional interest shown in this issue. I was told that she would ‘grow out of it’ and that I ‘was worrying too much’. Jessie needed her buggy until years after her peers did. This was not just for mobility, but for feeling safe in crowds. We got some funny looks because she was tall for her age. Jessie would scream at loud noises, especially at emergency vehicle sirens. She startled easily, often crying when people made her ‘jump’. Jessie was a very early speaker, although she was difficult to understand and took a while to master ‘normal’ speech. We often had to ‘translate’ for her. Jessie could draw recognisable images, many months before her peers. Her nursery noted that she tended prefer adult company rather than her peers. This was still the case after she started school, where she would avoid play times with peers, and stay in to help the teachers whenever she could. Jessie’s planning for her birthday usually started the day after the last one. It was a massive thing for her, and we felt a lot of pressure to make it perfect. Jessie was a very earnest child, with a passion for animals, Lego, and as she got older, Minecraft, Dr Who and Sherlock. She was extremely creative, artistic and made intricate models from cardboard and tape. Even things Jessie enjoyed, could also be anxiety-provoking for her. Her physical difficulties were getting progressively worse over time, and she often asked to go to hospital. Jessie never once said she enjoyed school, even in reception, but her teachers loved her. More than one teacher said if they could have a whole class of Jessies, they would be happy. Her internal world was however exhausting to cope with. We never appreciated the struggles she had just to appear ‘normal’ on the outside as Jessie was a master-masker. We also did not know about the scary voices and hallucinations she was experiencing. Jessie was always focussed on food. She was a joy to take out and was able to go to restaurants and behave almost like an adult from when she was a toddler, provided we had drawing materials. Jessie also loved to go a McDonald's, Costas, Wetherspoons or KFC, country pubs, sushi bars… the list goes on. Her love of food was also extremely varied and adventurous when she was much younger. Sadly, this became increasingly restricted, after she developed long-term gastric issues and battled with body image issues. Jessie went to many birthday parties and other social events, but would struggle to socialise with other children. She was very honest – not understanding that ‘society’ does not always see telling the truth as a good thing. I tried to ‘manage’ her friendships and arranged lots of social activities and play dates/sleepovers, but this got harder as the children got older. Some parents were unhelpful and discouraged their children from playing with Jessie, because they thought she was too intense, or they thought male children should not have a female close friend. This had a hugely damaging effect on Jessie. No one seemed to understand how emotionally challenging it was to support Jessie. She said things that people thought were too mature, around sexism and racism. Jessie could quickly ask to leave social events, and wanted to hide away from others, or cling to us. She started hiding under blankets when she became overwhelmed. We would see unusual and unexpected ‘behaviours’ at these social events or at school parents’ evenings. We found this confusing and frustrating and did not understand. It seemed out of character to her usually ‘mature’ behaviour, and these were key indicators of neurodiversity, but they weren’t recognised or acknowledged by professionals. Jessie never played or spent time in her bedroom alone, at any age. I arranged many play dates, but often the friend would come and find me, and say that Jessie was playing on her own or not including them. She and always saw herself as the equal of adults. Jessie would stand up for people she didn’t even like, if she felt they were being treated unfairly. 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, 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 just about managed to cope in primary school, with a lot of support from us, and her behaviour was excellent, although all her annual school reports refer to her being ‘sensitive’ and ‘serious’. Jessie even challenged the sports teacher about girls not being allowed to play football in the football court at break times. There were worrying issues at the end of year 5 (aged 10), when Jessie went through puberty. Jessie started to struggle to go to school and her mood took a significant downturn. She was already picking up on the pressure about SATs so the school arranged for her to see a counsellor. We later discovered that Jessie had disclosed to the counsellor that she was hearing voices and seeing terrifying things. This important information was never shared with us. Had we been aware, we could have sought help years earlier - an example of ‘professionals’ not believing Jessie. After the statutory weighing at school in year 6 (aged 11), Jessie was told (not by us) that she was overweight, when she was not. She started starving herself, which was the start of more serious eating issues which were never taken seriously. She also struggled with certain textures of food or food ‘touching’ other food on her plate. As soon as Jessie started Secondary School, she experienced bullying on the school bus. She was reluctant to go to school. We did not feel confident about the school’s response to the issues that she faced. Jessie performed well academically, so was one of their top students. She started to ask not to go in when there was a lesson with a teacher who she felt was did not care about her. We did not allow Jessie any access to social media until she was 13, even though many of her peers had access for years before. Once she had a smartphone, we had no idea that she was accessing damaging content online, including self-harm images, ideas and triggers encouraged on websites. She found ‘pro-Ana’ content too. Jessie had a great sense of humour and was the most bright, brilliant person. She could light up a room with her smile, and make people laugh, even in the hardest of times. Jessie was infinitely kind, caring and compassionate and had a really strong sense of injustice. She would always stand up for the underdog, but as time went by, seemed unable to stand up for herself. She was a real activist. Despite this, friendship issues started a downward trajectory in year 8 (aged 13) and Jessie felt rejected and completely misunderstood by her friends and peers. She was sensitive and picked up on the anxiety of others, especially adults, around her moods. She became very anxious about almost everything. When the school applied for an EHCP, East Sussex County Council declined to even undertake an initial assessment. This was unacceptable, given that Jessie had already been detained under MH section in hospital. We appealed this decision, and after a short meeting the authority resiled and apologised. Sadly the EHCP had little impact on Jessie’s life as little of it was ever delivered. We were left to cope on our own to keep our child safe and alive. Services were reluctant to help us. This placed an unfair and unsustainable burden on the us as parents. No mental health units Jessie was in were appropriately therapeutic. We witnessed that staff spent a lot of time locked in their office, rather than being present on the ward. Patients and visitors were required to knock on the office door, to ask for their belongings or help. The units were noisy and scary environments. In hospitals, Jessie was chastised and punished for her autistic behaviour. Staff would use restraint or a chemical cosh or forced isolation, rather than less intrusive methods of appropriately supporting patients. Most staff were not sufficiently trained or experienced to support Jessie and the other patients with their needs. We found it difficult working with many of the ‘professionals’ involved in Jessie’s care. We weren’t believed or taken seriously or perceived as too demanding. We were told that our expectations for Jessie getting the right care, ‘were too high’. There was a massive disconnect between mental and physical health services. Jessie had mental and physical health needs, but it was not possible to receive the right care in one place. When detained in psychiatric hospitals, her physical health suffered or needs were not met, such as her Ehlers Danlos Syndrome. There was little understanding of autism throughout the services we dealt with. Often, we were directed to learning disability services as “autism” and “learning difficulties” are lumped together. This contradicted evidence that the majority of autistic people do not have a diagnosed learning disability. Jessie/we were regularly caught in the middle of “services” fighting with each other, over who was responsible for Jessie’s care. During Jessie’s many crises, assessments took hours or even days to appear. We often ended up in A&E departments, which were clearly not the right place. The staff struggled to support patients with autism, learning disabilities and mental illness. One of us would stay with Jessie overnight with nowhere to sleep, and left responsible for her care. We struggled to understand that approach taken by ESCC social services. The decision and formulations of care plans were not consistent, often reactive to a crisis and did not involve consultation with Jessie or us. In the course of time, social services decided to place Jessie in independent living, which was unrealistically optimistic. We could not understand the logic, other than it cost less. Jessie simply could not cope or be kept safe in these environments, and this relied upon agency staff who were often doing two jobs, and were working nights when they were already exhausted. They would often fall asleep on shift. There appeared to be little assessment by agencies of the skill, experience and training that staff had. Some of the approaches by services punished Jessie for being unwell. Planned outings, family visits and food were withheld, in response to incidents of self-harm. Jessie felt under immense pressure to stay “incident free”, which in cause Jessie further distress and harm. The wards that we visited, did not always feel safe. We would be told about a lack of staff and resources. Some staff were not adequately trained and lacked compassion. Jessie really loved to go for a drive in the car. She would play such an amazing range of music, from across genres, including many bands I had not heard of. She knew so much about music, and taught me so much too. She loved just scrolling through her many playlists, on YouTube or Spotify. Often music and phones were banned in units and outings restricted. During Jessie’s life, numerous reports were commissioned to assess her mental and physical health needs, and set out plans as to how to meet those needs. Many of the reports we found to be accurate and excellently prepared and presented. But then the conclusions were ignored and few of the actions ever delivered. Jessie had a Hospital Passport and a Communication Passport which contained important information about her needs, medication and other matters affecting her care. Sadly, hospitals were just not interested in the passport. One matron rolled their eyes at me when I asked if they had seen it. Whilst at Mill View, Jessie started making jewellery and this gave her a sense of purpose, so for a few weeks she had less distress. This was suddenly taken away when her observation levels changed. This had a distressing impact on her. 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. Jessie never grew out of her love for cuddly toys and always took one with her, even as an adult. She was still very child-like, but this was never accepted by many of those responsible for her ’care’. 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 lost our precious child on the night of the 16th/17th May 2022. 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. Jessie was a courageous person who struggled with her physical health and was not understood by authorities. One finding which the family felt was very relevant to their own circumstances read ‘We also found a clear association between access to appropriate care and reductions in premature death, suggesting that, when the right level of care is provided, the level of risk goes down . . . ‘ Mental health has been a 3rd class services for decades. Leaders know exactly what is needed but things are getting, worse not better. The Transforming Care programme has failed. We welcome the Jury’s findings and feel they got a real sense of who Jessie was, of all her difficulties, and the fight as parents that we have had with health services and East Sussex County Council, since 2016. Jessie was often misunderstood and badly treated since she was 14. This added layers of traumatic experiences to her young life, exacerbating her anxiety, and resulting in complex PTSD. Jessie’s physical pain and conditions were often brushed aside or simply ignored, especially since she turned 18. Mental health units just do not have the right accommodation, equipment, skilled staff or interest to support people with physical disabilities and illnesses. It is so utterly disappointing that both Brighton & Hove City Council, and East Sussex County Council, completely failed to deal with safeguarding enquires appropriately, and in a timely manner. This had a significant detrimental effect on Jessie’s wellbeing, and on the family, as she was being abused and neglected by care staff in the community. We call for the practice of using unregulated agencies (which are then able to avoid accountability) to care for the most vulnerable, to be banned. The way we as parents have been treated since 2016, by services who are supposed to be there to help and support, is inexcusable. There is no need for the arrogance and dismissive attitudes we saw demonstrated time and time again, by some social workers and their managers. Instead of parent-blaming, they should be looking hard at their own actions and damage they are causing to families, who want to work with them and are desperate for some compassionate support and help. The multiple, repeated, systemic failures in Jessie’s care definitely led to her death. Jessie was our beloved, loving, caring, bright, funny, creative, and intelligent daughter. She wanted to eventually work and help in the care sector. We miss her every minute of every day. Her death has left us devastated. Our lives are changed forever, but most of all Jessie lost her life unnecessarily and avoidably, at such a young age. Jessie never got to reach anywhere near her full potential, but she was still able to touch the lives of so many people. This world was too much for my darling girl, but is certainly a much better place, for her having been in it. Jessie’s vibrancy, enormous capacity to love and care about others, and her kindness were always there in the darkest of times. She regularly gave her pocket money to the homeless people in town. 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.