Marie McManus wants to show me the final photograph taken of her daughter Pip. It was 9 December 2015, and the 15-year-old is standing on the platform of a railway station five minutes’ walk from the family home. In the CCTV image, Pip is wearing a red hoodie and looking up the track to see if her train is coming. But she’s not going to get on it.

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Everything about what happened to Pip McManus is shocking. The terrible way she died; the extent of her illness; the inadequate response of caregivers to her medical condition, which was cited by an inquest jury as a contributory factor in her death. But perhaps what’s most shocking is that her parents, Marie and Jim, were fobbed off and belittled time after time by staff of the very healthcare system they so desperately hoped could help her. For the McManuses, it was like watching Pip die in front of them in slow motion, across three years of hell.

“Our big fear, all along, was that she was going to become just another statistic,” says Marie. The McManuses desperately hope that their story can change what happens to the Pips of the future. “We’ll never know if her death [she was hit by the train] could have been prevented,” says Marie, “for the simple reason that no one ever really tried to prevent it.”

The McManuses live outside Stockport, in a house that Jim, a builder, works on in the spare moments when he isn’t working on someone else’s house. He and Marie, who’s on leave from her job as a healthcare assistant in a hospital, have three older children. Pip, who was their youngest, was born in the first month of the new millennium.

They were a happy, close-knit clan, and the siblings got on well. Amid the normal hurly-burly of family life, no one paid much attention when Pip, who was then 12 and had always been tomboyish, started saying her chin looked too fat. Nor did Marie think anything of it when, on a few occasions, she discovered Pip’s packed lunch uneaten in her schoolbag. She had found it difficult settling into her secondary school – but so do many kids. It wasn’t until Christmas that alarm bells began to ring. “She was obsessing about food,” says Marie. “She wouldn’t have butter in her mash, she only wanted protein, and she wasn’t eating anything sweet.”

Facebook Twitter Pinterest Jim and Marie McManus. Photograph: David Sillitoe/The Guardian

Despite Pip’s protestations, Marie took her to the GP. By this stage, her family and friends had noticed she was losing weight. The doctor, though, seemed unconcerned. “He said, we’ve got a lot of children these days who are obese,” remembers Marie.

But Pip was nervy and constantly on edge; she couldn’t relax or sit still, and it was obvious to her family that something was very wrong. In January 2013, Marie took her daughter back to the doctor: she’d lost more weight, and Marie explained that Pip was now exercising obsessively the entire time (“We’d even hear her doing star jumps in her bedroom”).

Again, the doctor wasn’t worried; so Marie called in a dietitian friend to talk to Pip about her eating habits, and the importance of being a healthy weight.

A month later, they were back at the doctor’s. Marie, by now, was petrified: “I’d look at her sleeping at night and think, ‘She’s going to die.’ She was like a rag doll, and a terrible colour.” For the first time, at this consultation, Marie heard the word anorexia. But there was no talk of hospital admission; instead, Marie was told to “see what you can get down her”, and put in touch with the local Camhs (child and adolescent mental health services). She remembers thinking, as they left the surgery: “We’re going to lose her.” When they got home, Pip seemed confused, disoriented. She refused a milkshake, and when she tried to pour cereal from a packet, it ended up all over the table.

As Marie and Jim recount Pip’s story, you get a palpable sense of their frustration that, time after time, the medical staff failed to take seriously a problem that seemed to them both blindingly obvious and deadly serious. Their instinctive feeling was that their daughter was in danger – yet the people who could help her would not acknowledge that danger. “Imagine if your child had the symptoms of a life-threatening cancer, and doctors kept refusing to take it seriously,” says Marie. “That’s how it felt to us. If it had been cancer, we’d have got the help we needed.”

There are many elements to Pip’s story, but perhaps one of the most important is that as recently as two years ago, this child with a life-threatening medical condition was ignored because mental health is not prioritised in the way that physical health is.

I thought, they’ll put a drip in, they’ll give her fluids. They’ll make her better Marie McManus

The next day, Marie took Pip back to the GP once again. This time, arrangements were made to admit her to Stepping Hill hospital near the family home in Stockport. “I thought, they’ll put a drip in, they’ll give her fluids. They’ll make her better,” says Marie.

But Stepping Hill is a general hospital, and Pip was in a paediatric ward. It fairly quickly became apparent to Marie and Jim that she was not getting the specialised care she needed there. “They didn’t seem to really know what to do with her. We were always asking, is there any more help? And they would say, she’d need to have had three emergency admissions to be referred for more help. We were shell-shocked by what we were up against,” says Jim.

One important thing to realise about anorexia, Marie points out, is this: the eating disorder means that the patient doesn’t want to get well. “If it had been cancer, Pip would have wanted to get well. But with anorexia, the disease makes you want to have it.” So while at home, she ate virtually nothing, in hospital Pip managed to eat a minimal amount of food so that she could go back home – and there, she felt she’d be able to resume her obsessive low-calorie diet and manic exercising.

After a month or so in hospital, Pip was discharged home, into the care of an outpatient team from Camhs. “Someone would come round to watch her eating, once a day,” remembers Jim. “But they’d arrive late. And there were lots of silly rules, like Marie couldn’t be in the kitchen at the same time as her, and she had to eat her meals at set times.” For Marie, the regime felt as though she and Jim were being blamed. “I thought we were being classed as crap parents. I felt they thought we were useless. One psychologist told me that Pip wouldn’t engage, and we were all wasting their time.”

Once again, the McManuses felt trapped: they knew their daughter needed urgent help, and they increasingly felt that no one in the Camhs team was specialised enough to provide it. In May 2013, having lost weight again, Pip was readmitted to Stepping Hill. Soon after, the breakthrough the McManuses had waited for seemed at last to have arrived: their daughter was moved to an inpatient unit for young people with anorexia, Galaxy House in Manchester. “By this time she was a bag of bones, and using a wheelchair,” says Jim. Marie remembers how shocked the consultant was by Pip’s appearance. “She was dying. But at least she was with people who were proper specialists, at last. I thought: this is the help we’ve been waiting for.”

For a while, it seemed it was. But anorexia is a Catch-22 of medical conditions: the patient recovers physically, but psychologically may want to relapse. Pip was discharged home in October 2013, but soon started to lose weight again. The family struggled through the winter of 2013-14 – everyone was feeling the strain. Pip was now attending a special school. She was still exercising obsessively (“her feet were in tatters from all the walking she did,” remembers Marie), and she felt guilty about the effect her illness was having on everyone else – Jim’s work was suffering, and there were economic implications. “She felt she’d given us all these problems,” says Marie. “It was heartbreaking.”

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In August 2014, Pip collapsed and was taken back to Stepping Hill. Her parents were desperate to have her sectioned so she could get the treatment she needed; but yet again, what seemed so palpably clear to her family still seemed to be eluding the doctors. “I remember one doctor saying if she was sectioned it could hamper her chances of getting into the US in the future,” says Jim. “I couldn’t believe what I was hearing.”

It took 10 days to get the section. By then, she had been admitted to the Royal Manchester children’s hospital, where a nasogastric tube was fitted to give her nutrition. Again, the McManuses were made to feel they were part of Pip’s problem. “We were told we could only visit for two periods of two hours a day,” says Marie. “I thought: she might die, and can I not be there if I’ve already been in for four hours?” This was the antithesis of holistic, family-centred care; at one point, Marie was asked if she had brought chewing gum, which Pip used as a laxative, into the hospital.

That September, when Pip was transferred to the Priory Hospital Altrincham , a specialist inpatient mental health unit for young people, it felt to Jim “as though we’d won the lottery”. At last, he remembers thinking, this is the beginning of the end of the nightmare. “We thought, ‘finally she’s with proper specialists’. We met doctors who had empathy and proper understanding of this very complicated condition.”

Tragically, though, the help the Priory offered was too late. Although she put on weight, by the time she was discharged in December 2015, Pip had already been talking about killing herself. Five days after she returned home there was a row about whether Pip could go to the gym. She walked out of the door – and never came back.

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Marie and Jim say they’ll never stop feeling guilty about their daughter’s death – despite knowing they fought for her all the way. “They have been let down just as much as Pip was let down,” says Jane Smith of Anorexia & Bulimia Care. “What’s most shocking is that Pip’s case is not an isolated one – I hear from many families who say their child’s anorexia isn’t taken seriously early on. The National Institute for Health and Care Excellence guidelines say early intervention gives the best chance of recovery – but many families, like Pip’s, are turned away, often several times, when they first seek help,” she says. “GPs can’t be specialists in everything, but no child should be losing weight, and there should be a big red flag for any child who is.”

Too many people, medical staff included, still trivialise anorexia as “the slimmer’s disease”, says Smith, and treatment centres are an NHS Cinderella. But anorexia has the highest mortality rate of any mental disorder – and 20% to 40% of those deaths are because of suicide. Its victims are most likely to be people just like Pip – children and young people, most often girls, imprisoned in the vortex of terrible mental ill health, and in desperate need of specialist help.

Pip didn’t want to die. She wrote to her family about how much she wanted to grow up and have a life. But, she went on: “I can’t fight anorexia any more. I have tried so very hard, but it has won me.” The tragedy, for her family, is that it didn’t have to be that way.

• The McManuses are raising funds for anorexiabulimiacare.org.uk at justgiving.com/fundraising/The-Pip-Foundation

• This article was amended on 12 June 2017 to correct a reference to the Priory Hospital Altrincham, from the Priory Hospital Cheadle Royal as an earlier version said.

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here.

