Ayla Haines was just seven-years-old when her mother Jane noticed she was developing differently to other children her age. She started displaying signs of obsessions and compulsions and would harm herself by picking at her skin. Her fixations were so strong that she spent an entire Boxing Day convinced she had harmed another child at her school, despite no evidence of this happening.
As she moved into her teenage years these compulsions intensified, and as with it did the severity and frequency of her self harm. The physical harm Ayla was inflicting on herself amplified and she refused to eat, developing anorexia and at one point while hospitalised plummeting to a tiny five stone.
Over the course of a decade, Ayla’s situation was so desperate that in continued efforts to harm herself or take her own life she swallowed a toothbrush, razor blades, developed a bald patch from constantly banging her head and bit at her own flesh. In one year alone, Jane says the hospital where Ayla was staying reported over 80 incidents of self harm and 100 instances of risk behaviours.
Ayla was passed from hospital to hospital throughout her adult life, each claiming that her needs were too complex for them to deal with. Many of these were hundreds of miles away from home with family struggling to visit regularly due to there being no suitable facilities in Wales.
READ MORE: The sadness, anger and flickering light of hope in a Welsh town that faces life or death
READ MORE: Knife crime in Cardiff: The scourge of the city as told by those who have lost everything
While under the case of adult services, her mental and physical state deteriorated so much that by the time she reached her early 20s she was sectioned under the mental health act. After stints at hospitals in London and Cardiff she was then admitted to the Northamptonshire Assessment and Treatment Unit (ATU) where she spent five years more than 200 miles away from her home in Carmarthen, in west Wales.
Ayla sadly died at Parkland Ward at St Bernardâs Hospital in London on April 20, 2022 aged 29 – after taking her own life.
Now, to honour her daughter’s memory, Jane has decided to speak out about the failings she believed led to Ayla taking her own life, including misdiagnosis, what she sees as punitive treatment and a lack of suitable facilities to treat such conditions in Wales.
Jane believes her daughter had autism, which could have been detected from a young age, and had this been diagnosed and managed her treatment would have been very different. Jane says this diagnosis was constantly refused by clinicians despite offers of pro-bono assessments. “She started self harming around seven-years-old, but I became aware of differences between her and her peers prior to that,” said Jane.
“Initially because she had asthma and eczema and things, those took priority. And even with those sorts of differences she was happy initially, but then as her peers grew you could see she didnât grow in the same way. It was called Asperger’s then and so I read a bit about that and thought that ties in with Ayla to a degree.
“But at that point in time, I was aware she could make eye contact and things like that, she could show empathy. Now theyâve since realised girls present differently to boys and I wonder had she been assessed for autism at a young age would her life have been a lot different.” She says that during her whole time in treatment both her and Ayla asked to be assessed for this diagnosis, and the failure to do so ultimately led her to taking her own life.
Jane says that Ayla started to deteriorate when she was under the care of adult services and when she was labelled as having a personality disorder and not autism. She said that while Ayla would eat somewhat at home, when she went into a hospital on a voluntary basis for her mental health they were not equipped to deal with anorexia which led her to become more unwell.
“We had a bit of a regime at home where she was passionate about karate so it was likeâ if you want to train, you’ve got to eat a sufficient amountâ So then while there at the hospital she was like ‘oh great I havenât got to eat’ and then by the time she realised she didnât want to be there she needed tube feeding because she had deteriorated to such a huge extent.”
Jane says it was then that Ayla was deemed unsuitable to return home and was sectioned and transferred to the Priory Hospital in London. She says that her daughter’s mental health deteriorated further here due to what she believes was putative measures – she claims leave was restricted should Ayla self harm which further impacted her mental health.
“Just to give an example of the number of incidents of self-harm. When she first went into hospital as a voluntary patient to our local unit, I think over a six month period, there were five incidents of self-harm and she wasnât aggressive and her risk to others was zero.
“Come 2020, her eighth year under care and seven of those had been punitive therapy, there were 146 risk behaviours, 81 incidents of self-harm, 42 incidents of aggression. And then there were other things like verbal aggression.”
The distance from home was also an issue for the family, who were unable to visit regularly. “It was horrific. Even before going into hospital ,Ayla didnât do well even staying at friends houses. She didnât fare well staying away at all so it was horrific, I know the first night in the Priory she had to be injected and restrained.
“She mustâve been so frightened, 200 miles away from home and we were just powerless to do anything. We couldn’t attend meetings, when she was in the local unit we went to ward rounds with her. We were there to support her of course and we would go to her six monthly meetings but we couldnât go to her weekly ones.”
Jane said that the distance further affected Ayla’s mental health as she would put pressure on herself to be well for visits. “The pressure on her, especially while away, to be well when we were visiting was immense.
“There were times when we were 20 minutes away and we had a call to say she was unwell and the visit was cancelled and she felt that immense pressure. So there was a yearâs period where we didnât visit at all, it was too much for her.”
After the Priory were unable to manage Ayla’s needs and the programme broke down, she spent time at Ty Catrin in Cardiff, before being moved 230 miles away to St Andrew’s Healthcare in Northampton.
It was while at St Andrews that Jane said her family saw Ayla’s self harm deteriorate further and the would constantly cause injury to herself.” She had to wear a helmet on her head. She had two protective sleeves on her arms because she would bite.
“She had the staff with her in the day, four in the night, and sheâd still manage to head bang and things because she was so desperate.” Jane says that in the 10 years Ayla was in the hospital they never saw her without a member of staff, and yet despite this she was still able to harm herself.
“I remember she was 2:1 at one time and their [members of staff] snoring woke her up so she realised they were asleep and bit her arm which required her to have 10 stitches.” Jane says that this poorly cared for and as such that Ayla developed gangrene which had to be surgically removed.
It was around this time that Ayla swallowed a toothbrush that became lodged in her intestine and remained there for three to four years. There was also permanent disfigurement to her head due to constant head banging. Her weight was so low she was tube fed.
Despite Ayla’s obvious distress, Jane says that her daughter never lost her compassion and was just as concerned about her family – in particular Jane and her grandmother to whom she was also close.
“All credit to her because sometimes she would be sad but she never complained about her situation. She never held it against me that I agreed to section her. She was so compassionate towards other people and wanted to know how you were.
“There was so much thoughtfulness, I remember her saying âyou donât know the half of it mumâ. Her personality hung in there right to the end.”
Jane says that the visits would vary and sometimes they would play cards, or sometimes Ayla was too ill to be seen. She said that she was often in tears on the drive home having to leave Ayla. “At times she looked so ill, you could even smell the illness at times, and youâd have to leave her there like that, I almost cried the whole way home.”
In February 2020 St Andrews was placed into special measures and Ayla’s ward closed. She was moved to the Parkland Ward at the Orchard in London where Jane believes the care was better suited to Ayla’s needs but that it was “too late” and the effects of seven years of putative treatment were irreversible.
“After the other places, when she went to the Orchard, which offers a relational approach, in a six month period you’re looking at ten incidents of self-harm and two incidents of aggression. So that sort of highlights that this punitive therapy doesnât work, she literally got worse and worse and worse. I always say it was a shame she died there really as that’s where she was getting the best care”.
Jane says that while at the Orchard Ayla was allowed to have open windows, no head helmet or sleeves and silent alarms which had a profound effect on her mental health and behaviour. She said that while the initial positive impact and the family had “hope”, Ayla was having regular psychotic episodes and in her journal wrote she would never go home.
“I felt awful because we had been promising her that she would come home and I think thatâs when she went downhill when she realised she wasnât going to be coming home or closer to Wales and an assessment for autism.”
Ayla made a further attempt to end her life in February 2022 and was admitted to intensive care. On returning to the Orchard in March it was suspected Ayla fractured her skull by banging her head so hard, and in April sadly successfully took her own life.
Jane described that when two policemen knocked on her door to tell her of Ayla’s death she was shocked, even though due to her long deteriorating health they had anticipated such devastating news many times over the years.
“We were regularly expecting that phone call, every time someone from the ward called we thought this was it. When they came I kept saying I couldnât believe it even though we had half been expecting it all those years. It was sad that she died there at The Orchard because the quality was so much better and she had been improving”.
An inquest opening in May 2024 found that failures to record observations, as well as a failure to follow protocol following missed observations, inadequate handovers, and extenuating pressure on staff, are the significant contributory factors to Ayla’s death.
Now, over two years since her death, Jane who has no other children, says she wants to speak about how she believes her daughter was failed in order to raise awareness to others and so that her “suffering was not in vain”. Speaking of her grief she said:
“To me they key failings were within the lack of specialist treatment for anorexia, the fact the therapy was punitive, being sent far away from home and the overuse of medication.
“Wales has some really good policies in place for mental health and for autism. So they do know what needs to be done. They just don’t implement any of that policy.
“I do not understand why the treatment Ayla needed could not have been made available on the NHS in Wales which would have negated the need for Ayla to be sent so far away from home. Ayla was deprived of the opportunity to receive treatment nearer to her home, her family – her support unit. As a family we did everything we could to support Ayla, but she was seriously failed by a system that was meant to care for her.
“Youâre so powerless and youâre watching your child being tortured really and youâre powerless to do anything about it. Itâs horrific, and it still is horrific. Itâs not just the death , it’s thinking what they put her through and what was inflicted upon her.
“At her funeral I said I would continue to campaign because I donât want her suffering to be in vain. For the sake of other parents, people going through it.”
For confidential support the Samaritans can be contacted for free around the clock 365 days a year on 116 123.
EMEA Tribune is not involved in this news article, it is taken from our partners and or from the News Agencies. Copyright and Credit go to the News Agencies, email news@emeatribune.com Follow our WhatsApp verified Channel
