Latest news with #anorexia
Telegraph
11 hours ago
- Health
- Telegraph
‘I'm living proof why assisted dying Bill is wrong'
On Thursday, Ailidh Musgrave, 28, was discharged from mental health services. Just six years ago, the picture was very different. In 2019, Ms Musgrave was so sick with anorexia that she is sure she would have not only met the criteria for assisted dying, as set out in the Bill MPs are debating on Friday, but she would have jumped at the chance for medical assistance to end her life. 'If I'd known that there was a Bill out there like this, I would have done my absolute best to access it in order to take my life, because I couldn't see a way out,' she told The Telegraph. The potential impact of Labour backbencher Kim Leadbeater's assisted dying Bill on people with severe eating disorders is one of the key concerns that could see MPs reject the plans. The Terminally Ill Adults (End of Life) Bill, under which terminally ill adults expected to die within six months would be able to seek medical assistance to end their lives, initially passed by 55 votes in November. It could become law if enough MPs back it in an historic vote on Friday. However, the vote is said to be on a 'knife edge' after a series of controversies, including on issues relating to conditions like anorexia. Ms Leadbeater has claimed the so-called 'anorexia loophole' – a gap in safeguards that means sufferers could qualify for assisted dying on the basis of life-threatening malnutrition – has been closed. At a press conference on Thursday, the MP for Spen Valley told The Telegraph she believed her support for an amendment from MP Naz Shah, which would ban eligibility based solely on a voluntary refusal to eat or drink, addressed the concerns. 'In terms of amendment 14, my understanding was that that was why it was tabled, so that's why I supported it,' she said. But in the final 24 hours before the vote, experts said this claim was incorrect. Dr Annabel Price, the lead for assisted dying in England and Wales at the Royal College of Psychiatrists (RCPsych), told The Telegraph: 'If the Bill were to proceed, it is essential that it excludes the physical effects of mental disorder as the basis for eligibility. 'Malnutrition caused by anorexia nervosa, for example, has been deemed as a terminal illness under similar pieces of legislation in other jurisdictions.' The RCPsych, along with eating disorder charity Beat, has for months urged Ms Leadbeater to back an amendment that would prevent patients from qualifying on the basis of life-threatening physical complications stemming from a mental illness. But she has refused to do so. On Thursday night, Tom Quinn, director of external affairs at Beat, told The Telegraph: 'Eating disorders should never be treated as terminal – without changes to this Bill, there's a danger that they will be. 'While we acknowledge that the Bill is not intended for the use of patients with eating disorders, there is a risk that some patients with eating disorders may qualify as being terminally ill based on physical symptoms of malnutrition such as kidney and heart failure.' Mr Quinn said that unless a clear amendment was passed to exclude eligibility based on the physical consequences of mental illness, 'the anorexia loophole is not closed', and the charity remained 'very concerned about the risks the Bill would present to those with eating disorders and urge MPs to oppose it.' Ms Musgrave, who is autistic, began suffering from a severe eating disorder aged 13. In 2019, she had also just been diagnosed with a connective tissue disorder, which made it harder for her body to digest food, and had given up hope of recovering. By this point, she had been in and out of hospital for years and was now struggling to access further treatment. 'I think 26 hospital placements rejected me in the 20 weeks that my team was looking for a bed because my needs were 'too complicated'. I think that the interaction of physical health, the eating disorder and the autistic diagnosis, it's a lot of people to untangle and manage. I think with what I was living off, I would not have, I would certainly not have lasted six months to live,' she said. Ms Musgrave, from Birmingham, was finally admitted to a general psychiatric unit which could not provide specialist eating disorder treatment, and in May of that year moved to a general hospital ward where she continued to lose weight. 'I'll be honest, I think it's down to my mother coming in every day to try and encourage me to eat what little that I would, that actually kept me alive, but barely kept me alive. I had a very low BMI,' she said. 'My mum knew I was desperate to die' The combination of her physical condition – Ehlers-Danlos syndrome – and over a decade of suffering from anorexia, left her feeling hopeless, and she is sure that if Ms Leadbeater's bill had been an option, she would have gone for it. 'It was my ninth admission. I didn't have any qualifications, I had no friends, I was fully dependent on my mum, and I was very, very high risk to myself, and just did not see the purpose of life, if it was this torturous,' she said. Ms Musgrave added: 'My mum said to me later in recovery, that she actually could understand why I was desperate to die, seeing me in the condition I was in, the state that I was, she understood that it would have been kinder and less painful than living every day as I was, and that must have been so hard for my mum to say after having fought for my life and my care for so many years.' She is speaking out now in the hope of reaching undecided MPs who may not be aware that the Bill could make it legal for people suffering from severe anorexia, as she was, to be given lethal drugs by doctors to end their lives. In June 2019, Ms Musgrave was eventually transferred to a London specialist unit where she was sectioned under the Mental Health Act, meaning her treatment was mandated by doctors. She stayed there until May 2023. 'I think the only reason I'm alive is because, actually, they never gave up. I didn't always get the right support,' she said. 'Reasonable adjustments weren't made, but the fact is that they obviously saw something in me that showed them there was hope, and so they didn't let me go. They weren't going to give up, they weren't going to discharge me. They weren't going to say: 'You're hopeless, you're too complicated'. They stuck by me until I walked out of those doors two years and two months ago, and today [Thursday], actually, it's a very emotional day. I've just been discharged from my psychiatric team.' Tearfully, she added: 'I'm proof that you don't need to give up on someone, and that if you sit with them, that they can have a life that they never imagined that they could have. And I have that, I have a life I never thought possible. 'I never could believe it, but it's real and it's true and it's happening, and it's so sad that people may never get that chance because they are so under the control of anorexia that they feel the only option is to legally access assisted suicide.' 'The law was our daughter's only protection' Lesley and Neal Davison, from Cheshunt, Waltham Cross, can be more sure than most parents of eating disorder patients that their child would have tried to make use of Ms Leadbeater's Bill. The couple lost their daughter Megan to suicide in August 2017. She suffered from a dangerous combination of Type 1 diabetes and a serious eating disorder. This condition, previously referred to as diabulimia, and now known as T1DE, sees sufferers intentionally restrict the insulin they have to self-administer in order to control their weight. Just days before she took her own life, their 27-year-old daughter asked her care team for help getting a referral to Dignitas, the euthanasia clinic in Switzerland. The response she got back, her parents claim, was not that it was wrong because her condition was treatable, but that her care team would not be able to do it because they would be breaking the law. Her parents are adamant that the only thing protecting their daughter from accessing assisted dying was healthcare providers' fear that they could face prosecution, and are speaking out now to warn MPs of the dangers inherent in this law change. 'There is absolutely no doubt in our mind that if she had had the option of taking assisted dying, she would have taken it,' Mrs Davsion told The Telegraph. 'In fact, when she was asking her therapist: 'Can you put me together a dossier so I can go to Dignitas?' The answer was, 'You know I can't Megan, it's illegal'.' She added: 'That was her only protection – no exploring why she felt the need to make such a request. So if this Bill is passed would that request be granted, with the same lack of investigation?' Ms Davison was an articulate, intelligent woman who obtained a degree in psychology and wanted to be a teacher. Her father told The Telegraph: 'Megan asked us, in a suicide letter, to help the people that were dealing with this condition she was leaving behind, and in our retirement, that's become our job.' Ms Leadbeater argued during Thursday's press conference that other safeguards in her Bill would make it 'virtually impossible' for eating disorder patients to qualify for an assisted death – or if they did, that they would die before the process was complete. 'I just think that is not going to happen. There is no world where that is going to happen. And tragically that person will also die before she goes through that process [of approval for an assisted death],' she told reporters. That assurance will not be a comfort for families like the Davisons – and it may not be enough to persuade MPs.
Daily Mail
3 days ago
- Entertainment
- Daily Mail
Controversial biohacker Bryan Johnson sparks outrage with bizarre 'thinspo' post about dieting
Millionaire biohacker Bryan Johnson is known for his strict diet and exercise routine - but he is now under fire for his latest post in which he encouraged people to throw out food. Johnson, 47, has become infamous for his multi-million dollar quest to reverse his age - heavily restricting his calorie intake to only eat whole foods and consuming over 80 supplements in order to remain young. In a recent post to X, formerly known as Twitter, he told followers: 'Throw it in the trash. You're not hungry.' Johnson's post was met with both outrage and mockery - many comparing it to a 'pro anorexia' Tumblr post of the past. 'Nothing tastes as good as skinny feels,' one user joked in the comments, referencing an infamous quote made by supermodel Kate Moss in a 2009 interview. 'I haven't eaten in four days but my night time erections are off the charts,' joked another, making reference to one of Johnson's many youth-seeking treatments. 'He's writing 2014 tumblr thinspo posts now,' someone else wrote. 'Wasting food to be thin? Is this economy? Honey no. I will live off my children's leftovers like a middle aged, obese raccoon if I have to. I don't care,' declared another. 'Anorexia encouragement play? Interesting,' another person replied Johnson previously revealed that he wakes up at 5am every day and goes to bed at 8.30pm in order to maximize his sleep. He eats his last meal of the day at noon, sticks to a 2,000-calorie vegan diet that includes broccoli, cauliflower, and walnuts, and gobbles down 80 vitamins and minerals a day. The biohacker also previously revealed he injected himself with his son's blood in a bizarre attempt to de-age himself. However, at the beginning of the year he announced on social media that he's moved to a 'total plasma exchange' instead. This involved removing all his blood, separating the plasma, and replacing it with a solution of five percent albumin and IVIG (intravenous immunoglobulin), which provides donated immune system antibodies. Back in 2023, he first spoke about tracking his erections at night, revealing at the time that he wears a small device on his penis while sleeping. This measure of sexual function, he said, could help predict other health outcomes like cardiovascular fitness. The California-based biohacker, who made $800 million after selling his company Braintree, has spent million of dollars attempting to reverse his physical age. Johnson's post was met with both outrage and mockery - many comparing it to a 'pro anorexia' Tumblr post of the past Johnson has spoken many times about his mission to spread his 'Don't Die' philosophy and is determined to break the 120-year ceiling of human life expectancy. He claims he now has the heart of a 37-year-old, the skin of a 28-year-old, and the fitness of an 18-year-old after adopting the highly-regimented program in 2020. The tech mogul has also previously spoken about his skincare routine, admitting that he tries to minimize the time he spends in the sun by only venturing out in the early mornings or in the evenings when the UV index is low. He is also a self-confessed sleep fanatic, claiming he has the world's best sleep score and achieved 'perfect sleep' for eight months. He goes to bed and wakes up at the same time every day, making sure to get his nine hours. Johnson - who hosts summits across the world in an attempt to spread the word on expanding longevity - has spent the past four years establishing his anti-aging protocol called Project Blueprint.
BBC News
6 days ago
- Health
- BBC News
'Skinnytok' ban too late, says woman who deleted app for health
A woman who struggled with anorexia said she had to delete TikTok to protect her health after "skinnytok" flooded her feed with "damaging" weight loss advice. If you have not heard of it, "skinnytok" is a controversial side of social media where people promote weight loss tips focused on restrictive eating with the aim of being "skinny". TikTok recently blocked the search for the term but Eve Jones, 23, from Cardiff, said, despite it being a step in the right direction, it "scratches the surface" on a larger issue - which people can find a way said it continued to restrict videos and blocked the search as it became linked to unhealthy weight loss content. Despite the ban, many videos promoting "skinnytok" which do not use the hashtag are still available on the app. As someone who has been in and out of hospital since the age of 13, Eve said the search ban was "too late" as the messaging is already out there. Eve has removed herself from the platform as she said users promoted "detrimental and disordered" eating and she was worried about the impact it is having on younger people."It's almost a compulsion to watch it. There is a self-damaging part of eating disorders where you try to access this," Eve said."Once you interact with one post like that, your feed is flooded with it so quickly."Letter accents and numbers can also be used to disguise damaging hashtags, Eve said, so content was still "very easy" to access."I'm lucky to be in a position where I have had my treatment and I how to avoid my triggers, but people on the other side of this won't be aware of that." The trend has seen a resurfacing of diet culture compared to that of the 2000's, with supermodel Kate Moss's "nothing tastes as good as skinny feels" frequently quoted as a source of controversial quotes include: "You're not a dog, you don't deserve a treat."Eve said she blocked certain words from her social media feeds, including TikTok and X, but the videos still appeared. Many users insist people should avoid consuming the content if it is harmful, Eve said, or come off social media, but she argues it is not that simple. "Anyone who is actively searching 'skinnytok' is either not going to recognise what they are doing is unhealthy, or they are not going to seek help about it," she said. The word skinny has become a buzz word online, Eve said, with many promoting extreme weight loss under the guise of having "healthy" self control and willpower. "There is a lot of denial in having an eating disorder" Eve said, adding that people often were not aware the content is damaging. Her anorexia spiralled from clean eating she believed was healthy. "The videos are encouraging people to take up habits I spent the last seven years trying to overcome," she added."I don't know if I have a friend who hasn't struggled with their food at some point, even if it's not a diagnosed eating disorder, it's affecting a lot of girls on social media. "I personally don't think anyone needs to know what someone eats in a day, it's a comparative thing."Eating disorder charity Beat surveyed people with eating disorders in 2022 about their experiences online and 91% of respondents said they had encountered harmful content which could fuel eating disorder thoughts and 2024, popular TikTok user Liv Schmidt was banned from the platform over her controversial weight loss posts, with many viewers reporting her account for "triggering" language. Known for "what I eat in a day" and "skinny girl essential" suggestions, Ms Schmidt was accused of "rage baiting" to boost her profile views. Tilly Short, 21, from Cardiff University, champions body positivity but said it was concerning as a lot of teenagers relied on social media for information. There is a constant pressure online, Tilly said, and despite trying to adjust the way she interacts with content so it does not appear on her feed, she said it was "almost impossible" to avoid. "You should take everything you see on social media with a pinch of salt. A lot of content creators are not qualified, they are not health professionals." Research from University College of London found people aged 10-24 who used social media sites were potentially at risk of developing image concerns, eating disorders and poor mental health. Alexandra Dane, lead researcher, said social media platforms enabled young people to constantly compare their appearance to others, which can "encourage young people to view themselves as objects that should be judged based on their appearance". Ms Dane described it as an "emerging global public health issue" and called for more recognition, funding and research to ensure the education and early identification of at-risk individuals. Tom Quinn, a spokesman for eating disorder charity Beat, welcomed the ban of the "skinnytok" but said TikTok and other social media platforms "must now take steps to ensure their platforms are free of all harmful content". Mr Quinn said people would often find workarounds to content blocks and there will still be damaging content that is not under the hashtag. "While social media will never be the sole and direct cause of an eating disorder, we know it can make things worse for those already at risk," he said. "It's important to note that some people who create this kind of content may be unwell themselves, so it isn't intended maliciously." TikTok said the platform offered a number of well-being resources as well as "strict rules against body shaming and dangerous weight loss behaviours".It added: "The platform regularly reviews its safety measures to address evolving risks."We continue to restrict videos from teen accounts and provide health experts and information in TikTok Search."If you or anyone you know have been affected by any of the themes raised in this article, help and support is available on BBC Action Line
The Independent
12-06-2025
- Health
- The Independent
Campaigners urge MPs to vote down assisted dying bill over anorexia ‘loophole'
People with anorexia could be allowed to die by assisted death under a proposed Bill, more than 250 campaigners have warned, urging MPs to vote down the legislation when it returns to the Commons. A letter to MPs, signed by 268 people who have suffered with eating disorders, warned: 'If this bill had been law during the years many of us were struggling, we would have used it to end our lives.' Campaigner Chelsea Roff, founder of eating disorder organisation Eat Breathe Thrive, warned that the Terminally Ill Adults (End of Life) bill contains ' dangerous loopholes that have enabled suicidal women with anorexia to die by assisted death' in other countries around the world. Only those diagnosed with terminal conditions would be covered under the assisted dying legislation, proposed by Labour MP Kim Leadbeater. But anorexia - which is primarily a mental health condition - can lead to lethal physical symptoms, including malnutrition, which campaigners say makes it difficult to entirely exclude it from the Bill. There are also concerns over the recent use of the term 'terminal anorexia', a diagnosis that has been used by medical professionals to describe patients who they do not believe can recover. The term – which has been widely criticised - was introduced in a case series published in the Journal of Eating Disorders, which described the deaths of three individuals with anorexia. The authors argued that those diagnosed with this condition should be 'afforded access to medical aid in dying in locations where such assistance has been legalised — just like other patients with terminal conditions'. It comes after a recent study found that individuals with eating disorders have died by assisted death in three US states - California, Colorado and Oregon. The legislation in each of these states limit eligibility to individuals diagnosed with a terminal illness. But pro-assisted dying sources said the definition of terminal illness in the bill is most similar to the laws in Australia, where there have been no cases involving eating disorders. The letter urges MPs to vote against the Terminally Ill Adults (End of Life) Bill as it returns to the Commons, warning that, in its current format, it is not safe for those affected by eating disorders. 'Eating disorders are amongst the most deadly mental illnesses', the letter warns. 'Despite eating disorders being a treatable illness, too often people are being failed by the system. Many people with eating disorders wait months and even years for treatment; they have to fight for access to basic care and support.' Labour MP Richard Quigley, whose own child has been in and out of hospital with anorexia for the last four years, echoed these warnings. While he said he is not opposed to assisted dying in principle, he argued that mental health care in the UK is not yet good enough to ensure the legislation is applied safely. 'Anybody that's experienced services will know that CAMHS (Child and Adolescent Mental Health Services), only scrapes the surface. 'You might get six sessions of therapy... but the system seems to be designed around pushing you out back into the world, rather than putting their arms around you until you're fully rebuilt. And sufferers end up relying on each other, which isn't the best form of treatment', he said. But despite his concerns, Mr Quigley also said he is glad the country is having a conversation about assisted dying. 'It is one of those very emotive issues. Everybody who wants it to take place has got a very harrowing story about somebody they've seen die under difficult circumstances. And everybody that doesn't want it has got an equally harrowing story of somebody that survives two three years after', he said. 'But from personal perspective, both eating disorders and mental health, it's very very difficult to make it fit. There's too much evidence from other countries that already allow assisted dying showing that people with mental health issues - and especially eating disorders - can elect to end their lives early.' Anorexia is a psychiatric disorder that can lead to severe physical deterioration and is known as the most lethal psychiatric disorder – with suicide being the second leading cause of death in anorexia. Individuals with anorexia are up to eighteen times more likely to die by suicide than their age-matched peers. 'With any other illness the patient wants to work with you. But with eating disorders, they actively work against you', Mr Quigley said. 'I'm just very much worried that we don't understand mental health well enough for it to be included in this bill, but I don't know how you'd exclude it. That's the problem', Mr Quigley said. A number of amendments were proposed as part of an attempt to ensure people with eating disorders were excluded from the Bill when it was at committee stage, but each of them were rejected. Labour MP Naz Shah, whose amendment was rejected last month, is tabling two amendments at the bill's third reading, one which will exclude people who have voluntarily stopped eating or drinking from the bill, and another which will exclude people are taking 'any action intended to bring about a state of terminal illness'. While sources close to Ms Leadbeater said she would be supporting the first amendment, both Ms Shah and eating disorder campaigners are clear this would not be enough to prevent those with eating disorders from being included in the legislation - as the decision to stop eating is not a 'voluntary' one for those with eating disorders, it is the result of a psychiatric condition. Ms Roff said she fears that, without appropriate amendments, a 'person with anorexia, in a moment of despair, might be given a lethal prescription rather than the treatment [they] desperately need.' 'That would be a terrible tragedy, mirroring what we have already seen happen in at least sixty known cases abroad, including three U.S. states where assisted death is only legal for terminally ill people. A third of these women never reached their thirtieth birthday', she said. A spokesperson for Ms Leadbeater said: 'It's an old story. This issue has been debated at great length in Committee and Kim is now supporting Naz Shah's amendment 14 that excludes from eligibility somebody who has voluntarily stopped eating or drinking. 'This, along with the existing safeguards in the Bill, would rule out people with anorexia falling under the cope of the Bill. 'To be eligible a person must have 'an inevitably progressive illness or disease which cannot be reversed by treatment'. Anorexia is not inevitably progressive and can be reversed.' But Ms Shah told The Independent: 'I have no idea what the amendment will actually be, and [Ms Leadbeater] is only accepting one, not the other, therefore I can't support the bill. The process is ultimately flawed'. She said it is 'categorically untrue' that the bill excludes people with mental illness.
RNZ News
11-06-2025
- Health
- RNZ News
Teenager starves to death alone in emergency accommodation
Photo: Warning: This story discusses eating disorders and disordered eating, and contains disturbing content. The parents of a teenager who starved to death alone in emergency accommodation believe that multiple agencies failed in their care. Their only child was able to keep them at a distance on the grounds they did not accept the teen was transgender - an identity the parents say the teen later abandoned. However, the couple allege that while attentive to their child's gender identity, various care professionals failed to adequately respond to the threat from a long-standing eating disorder. The 13-year-old girl in the photo, whom RNZ is calling "Vanessa" at the parents' request, is dark-eyed and dark-haired like the teen's mother. Vanessa looks shy about having the photo taken. It's the kind of photo any proud mum might have on her phone ... the next photo is not. It's of naked, skeleton-like remains, shrouded in the black nylon of a police body-bag. That photo was taken on the day in January 2023 that the teenager was found dead in a locked motel room, about an hour from the parents' South Island home. Vanessa had just turned 17. The last time Vanessa''s parents had heard from the teen was two days previously: a message at 7pm to the mother, Catherine*. "She texted me 'Mama, I love you'. "She didn't want to see us because she didn't want us to know how bad it was, the anorexia," Catherine says softly. "But you can see she suffered." Catherine and her husband are still waiting for a date for the coroner's inquiry into their only child's death. There is no doubt of the immediate cause of death: cachexia (extreme wasting), due to anorexia nervosa, according to the post-mortem report. The teenager weighed 30kg, which was 17kg less than she weighed as an 11-year-old. However, the parents believe it was the lack of adequate oversight by multiple professionals in health, education and social welfare in the last few months of Vanessa's life, which allowed that death. All the government and community agencies involved - Health NZ, Oranga Tamariki, the Ministry for Social Development, the Education Ministry, Presbyterian Support and the Salvation Army - have expressed their sympathy for the family, but said they were unable to comment as the case was still before the coroner. Vanessa was an extremely bright, sensitive, cheerful pre-schooler with a lively curiosity about the world. An only child, born to her parents late in life, Vanessa was "dearly hoped for, least expected", Catherine said. However, the family's happy, ordinary life was shattered when Vanessa was sexually molested at the age of five by an older child at school. The Rape Crisis counsellor who helped the family through the ghastly aftermath warned her parents that puberty was often a trigger point for children who had suffered trauma. "And that's exactly what happened to Vanessa. She was nearly 12, just at the start of puberty, when anorexia hit." Over the next five years, Vanessa would be hospitalised 10 times. Catherine said Vanessa would starve herself to the point where it threatened to damage the teen's heart. "She was overwhelmingly fixated with exact measurements, calories calculated, over-exercising, drawing disturbing and macabre images, hiding food in her room." Vanessa sought out pro-anorexia websites, connected with like-minded people via the Discord app and tried to hide the weight loss. "She used to drink litres and litres of water before a check-up when she knew she would be weighed. We turned the water off, but then she would go drink from the neighbour's hose." Vanessa became increasingly argumentative, and even violent towards them, Catherine said. Several times they were forced to barricade themselves in a room and call the police. "When you are very hungry, you are angry all the time. When she had these explosions, we wondered where she got the energy from." A psychiatrist from the local Child, Adolescent Mental Health Service (CAMHS), in a report dated December 2017, noted Vanessa "resists the idea that she has an Eating Disorder". "She has various rationalisations for her eating patterns and weight loss. She would like to contest the ridiculous nature of having to gain weight and eat in prescribed ways with anyone who would enter that debate with her." Vanessa continued to insist the obsession with weight and diet was "normal" and "all teenage girls were similar". The teen also suffered from obsessive compulsive disorder (OCD) and was diagnosed with autism at 15. The parents believe the "black and white thinking" that is characteristic of autism intensified her anorexic ideation. Vanessa exercised obsessively - running on the spot in her bedroom or the bathroom, according to one medical note. "During admission in hospital, mother said that despite being hooked up to an IV line with her mother lying on the bed beside her, Vanessa was doing sit-ups." While continuing to deny she had an eating disorder, Vanessa would become "oppositional and defensive" when her behaviour was challenged, the clinician wrote. In January 2019, when she was 13, a Family Court judge put Vanessa under a compulsory treatment order, at the recommendation of her doctors. "This was a huge relief to us," Catherine said. "This court order was the only barrier between her and her death. The only thing stronger than her obsession [with not eating] was her fear of going back to hospital. She hated it so much." In a letter to the judge, her father described his fears for her life, which (as he now notes) "seem sadly prescient": "Before you, you see my beautiful, vibrant, inquisitive daughter, with an intelligence well beyond her tender years. What you cannot see is the year or more of anguish, hopelessness and tears that began when our warm and wonderfully ordinary family life was turned upside down by the arrogant, manipulative and destructive mental illness called Anorexia Nervosa." Since its onset, Vanessa had "practically never eaten of her own volition", he wrote. "That her death may well be a painful and premature one is the bitterest and most crushing possibility. What parent could ever envisage such a hell?" Some things were going well for Vanessa. School work was easy, Catherine said, and she was years ahead of her peers in maths, sciences, computer programming and other subjects. She met a boy. At high school, she was also introduced to the concept of gender diversity and at some point in 2021 became non-binary. Vanessa adopted a gender neutral name ("V") and pronouns, which were used by staff and students. However, Catherine said immediately after a messy break-up with the boyfriend, Vanessa started identifying as a boy. At home, the arguments were now about gender identity as well as food, with Vanessa/V accusing the parents of being transphobic. "She tried to 'educate' us by sharing influencer videos. She said she must be right because all the health professionals and online articles agreed with her." Some clinicians quickly affirmed V's boy identity. However, Catherine said the teen's long-term psychiatrist was sceptical. "The psychiatrist advised us that Vanessa was using the transgender identity as a mask for her continuing anorexia - that Vanessa was saying the reason she didn't want a curvy, female body was not because she was suffering from anorexia, but because she was really a boy. "The psychiatrist recommended not affirming Vanessa's transgender identity." The school clashed with the parents over their refusal to buy the teen a boy's uniform. "The Dean rang, said we were being ridiculous, and gave Vanessa special permission to wear her own trousers at school, thus undermining both us and the psychiatrist who had known Vanessa for five years." In year 10, Vanessa enrolled with Te Kura, the Correspondence School, as V. Because all their child's schoolwork and social life were now online, it became difficult for Catherine and her husband to limit computer use. "Vanessa didn't have a phone yet. There were rules about handing in the computer at a certain time each night but it was a battle every day." Vanessa/V left home in March 2022. In an email to the psychiatrist, the father described an escalation in "ritualistic" behaviour and highly-restricted eating, abusive language and paranoia in the lead up. On 8 March, he had asked to check the computer. "It rapidly escalated into a battle over the device ... very quickly we both realised she had something to hide (hence the screaming and determination to hold the computer). "Although we retreated downstairs to a locked room, she kept screaming and violently kicking the door." They called 111. While they waited for police to arrive, their neighbour watched over Vanessa from a safe distance. "She reported that Vanessa was screaming, kicking and head-butting the wall before running inside." The police found a hammer stashed in a bedroom and the teenager hiding in the roof cavity. A check of the computer later revealed Vanessa/V had been using the Discord app and viewing (with other users) disturbing material. On 13 March, the teenager moved in with the family of an ex-classmate. Vanessa/V was referred to Oranga Tamariki and a caseworker arranged for the host family to receive an Unsupported Child Benefit. The parents were asked to write a letter to Work and Income confirming they could no longer have Vanessa living at home. "Vanessa seems receptive to this idea, probably not least because she now has practically unlimited use of a computer," her father noted drily to the psychiatrist. Then on 7 April, the court lifted the compulsory treatment order at the request of the CAMHS. "Her psychiatrist said to me, 'Let's give her an opportunity'," Catherine said. "And I was like, 'To do what? To die?'. Because we knew that she would just stop eating. "My daughter wrote in her diary the only reason she kept eating was because she didn't want to go back to hospital." That month Vanessa/V was also discharged from CAMHS, which had been treating the anorexia and other mental problems. The reason given to the parents was that Vanessa was "not engaging", Catherine said. "Of course she wasn't engaging. She was a teenager with a serious eating disorder." Vanessa texted her parents that if they would not accept her as a boy, it was better they did not see each other at all. "We were devastated. We didn't know where to turn or what to do. I couldn't sleep or eat. "Her father became introverted and silent." They had no contact until August, when Vanessa caught Covid and texted her mother. Catherine dropped off some supplies and after that they kept in touch everyday by text. "We were so relieved that Vanessa was now talking to us again that we didn't press to see her. Slowly we began to rebuild our relationship." At the same time, Vanessa's relationship with the host family broke down. Family Works, a service run by Presbyterian Support, found the teenager emergency accommodation. Catherine said Vanessa continued to keep them at a distance, but allowed them to supply various items, by dropping them off at an agreed location. Catherine said it was not only the 16-year-old who excluded them from her life, but also the small army of professionals in health, education and welfare agencies, who had assumed responsibility for their child's care. "Vanessa, and everyone who was supposed to help her, accepted the belief that we her parents, in not agreeing that she had become a boy, were uncaring bigots who deserved to be cut off." Some of the caseworkers involved did not even know about the history of anorexia, Catherine said. She did manage to see Vanessa in November 2022, at the motel where she was living. "She had a self-contained apartment with her own bathroom and kitchenette. "She was pleased and surprised to see me but was very emaciated." The motel manager told RNZ that she and V became very close in the three months they lived there - but she was not aware the teen's health was deteriorating. "V was very anorexic when they came and continued to be so." But because the teen always wore a puffer jacket and baggy clothes, it was hard to tell whether things were better or worse, she said. "My concern was for that sad child. "My main concerns were 'Can I help this person become more resilient? Can I help them find happiness? Can I help them get hold of life somehow and enjoy it?'." The teenager repeatedly assured her they were "eating OK", and social workers from Housing First (run by the Salvation Army) regularly visited clients at the motel. "To be honest I knew very little about anorexia, but I now know that people with anorexia are very good at covering what they are doing or not doing." V frequently went food shopping and discussed food, there was "always food in the fridge". "We only discovered afterwards that lot of food was returned to the shops and money refunded." At Christmas, she gave V dinner and "treats". "As far as I know, no-one else visited. We were the only ones who gave V any presents for Christmas or their birthday." She described the teenager as "absolutely delightful". "They couldn't make eye contact but weren't averse to physical contact. "V would frequently ask me if it was alright to have a hug. "The only time they got upset with me was when I suggested that at some point, they had to learn how to do some things for themselves because they would be living independently in the future, and they didn't want that. "That scared them, they wanted to stay here. "V told me this was the safest they had felt for years, here with us." The last conversation she had with V was two days before they died, when she tried to get V to make their own bed. "I refused to do it because I was trying to encourage them to do more things for themselves. "V said to me 'L, do you hate me?'. And I said 'No, I love you, that's why I'm asking you to make your own bed'." She found out later that V had persuaded another guest to make it for them. "That guest is pleased the last thing they did for V was something kind." V's death was a tragedy, she said. "They were a lovely person - we laughed and chatted, it was a pleasure to know them and I'm just really happy that - at least for the time they were here - they enjoyed themselves, they felt safe, they were comfortable." Vanessa's parents both saw her for the last time on 1 January, 2023 - but only at a distance. "She was wearing a puffer jacket in the middle of summer. She wouldn't let us near to see how thin she was, using the excuse 'You don't accept I'm a man'." However, her parents said subsequently, Vanessa phoned her father and then her mother to say she was "seriously questioning the 'gender identity thing'" and wanted them to know she was indeed their daughter. They were hopeful their child could be returning to them, but that was not to be. In an email to V's GP, the Family Works team leader said the teenager had dropped "a significant amount of weight" since she had last seen him in early December. "His weight loss alerted several staff members in the office. I spoke with V about his health and encouraged him to make an appointment with his GP to ensure he is getting the appropriate support." The teenager reported feeling tired from exercising and "overwhelmed" due to autism. "He fell to the ground at one point saying his legs were so tired, when I dropped him at home, he lifted his legs to get out of the car. He stated he has enough food and is eating well, as well as sleeping okay, however this is not obvious in his physical appearance." The worker said she was "breaching his confidence" because she was so concerned for him and wanted to alert the doctor. A GP appointment was booked for the next week - by then, however, the teenager would already be dead. "I do not understand why no-one called an ambulance that day," Catherine said. "How can it be that a child collapses in front of all these people [at the Family Works premises] and no-one calls an ambulance?" It was the height of summer and temperatures were sweltering. Catherine later heard the teenager had asked the motel manager for a walking stick and a hose to drink water from the tap without getting out of bed. "The manager said she thought it was weird but did nothing about it. I asked her as calmly as I could 'A minor asks you for a walking stick and a hose to drink water from the tap - are you not going to anything about it?'. "She got angry with me and said 'We are a motel, not social services'." The motel manager told RNZ she did not recall any mention of a walking stick, but the comment about the hose pipe had been taken "out of context". "V often made odd requests. With hindsight it possibly meant more than it sounded like, but it wasn't uncommon for certain requests that were unusual." Catherine said Vanessa last left her motel room on a Thursday. Saturday was her parents' wedding anniversary, and they decided to go for a drive in the country and were out of cellphone reception for a few hours. After that final text on Saturday night, Vanessa could not be contacted. "She would always text back because she knew I got worried. So we were worried." On Monday, Catherine rang the motel, but the manager said if it was not a "professional call", she could not put it through. So Catherine rang Vanessa's GP, who organised "a welfare check". When Catherine rang the motel again, the phone was handed straight to a police officer. "I knew immediately that Vanessa had died." When they arrived at the motel, there was a stench. Vanessa was lying in bed with her laptop propped up on her lap, dead two days. "At the scene, the Police corrected us when we used Vanessa's name and insisted on using a male name and pronouns," remembers Catherine. "I was so distressed by this." Vanessa's parents believe the teenager's death was the result of the removal of the protections of the Compulsory Treatment Order nine months previously. Catherine said it appeared there was "wilful blindness" on the part of those professionals, who were so focused on affirming Vanessa's gender identity, but did not pay the same attention to the eating disorder which would kill her. Their crushing grief is made worse by the knowledge that so many chances were missed. "Acknowledging and reporting her deterioration would have been a simple matter. Had they done so, our treasured daughter would still be alive." *Names have been changed for privacy reasons. Health New Zealand National director mental health and addictions service enhancement Phil Grady: "On behalf of Health New Zealand, I would like to extend our sincere condolences to this family for their loss, which we recognise has had, and continues to have, a profound and long-lasting impact. "As the matter is still before the Coroner, it is not appropriate for us to comment further at this time." Oranga Tamariki Deputy chief executive tamariki and whānau services Rachel Leota: "The death of any child is devastating for their family and community, and I would like to acknowledge the grief this young person's family will feel. "As this matter is still active before the coroner, we are unable to comment further at this time." Ministry of Social Development Group general manager client service delivery Jayne Russell: "Because your questions involve matters before the Coroner, we are unable to comment." Ministry of Education Spokesperson: "First and foremost, I want to express my deepest sympathies to you, Catherine, and your family for your loss. I cannot begin to imagine the pain of losing Vanessa. "Because this is an active case before the Coroner, we are unable to comment. I understand how difficult it must be for you and please know that our thoughts are with you, and we appreciate your understanding." Presbyterian Support Tumu Whakarae Tauiwi (Co-CEO) Barry Helem: "I am not able to provide any comments regarding an individual client. Presbyterian Support contractually cannot provide personal information as all client case notes are held by the Ministry of Social Development Youth Service Support Unit. "It would also not be appropriate to comment while this tragedy is under active review by the Coroners Court. "Our service is contracted to the Ministry of Social Development to assist young people to access the Youth Payment benefit. Part of a young person's obligations in receiving the benefit is to engage in education where clients have a choice of which area of study they wish to pursue. Our Youth Coach roles are not social worker positions; however, staff often advocate for clients and refer to other agencies/organisations if clients require other supports such as; a client's GP, transitional housing providers etc." The Salvation Army Regional housing manager: "In regard to your query relating to Vanessa, The Salvation Army has supported countless New Zealanders over the years in their housing situations, and we always complete regular assessments as well as care and support procedures for tenants, often in collaboration with referrals from other organisations we work alongside. "We are bound by strict guidelines under privacy legislation and professional social work ethics to protect the dignity and confidentiality of those we support, regardless of whether they are named publicly or not. Even with assurances that a person will not be identified, questions that pertain to individual cases risk breaching those standards. For this reason, we are unable to comment on specific individuals or their circumstances." If it is an emergency and you feel like you or someone else is at risk, call 111. Sign up for Ngā Pitopito Kōrero , a daily newsletter curated by our editors and delivered straight to your inbox every weekday.
