More than a million people in Britain are afflicted by anorexia and bulimia. But the real scandal is how long it takes them to get treated, or even taken seriously. Charlotte Philby uncovers some shocking truths about the way we deal with eating disorders

Holly set her sights on a career as a session musician after hearing a recording of Stevie Wonder's "Sir Duke". She was just 13 years old, but the moment had a profound effect, and soon after she took up private piano lessons with a local music teacher. Once a week, she would hop on the bus at the end of her road, and make the short journey across town. At first her parents were reluctant to let her go un-chaperoned, but Holly was a sensible girl, and this was a safe neighbourhood, so after some cajoling, they agreed.

Six months later, one Monday evening, Holly missed her bus. Worried she'd be late for the final run-through before her Grade 1 exam, she decided to make the 10-minute journey on foot. Two roads from her house, in a small town in Sussex, Holly was accosted and raped. Unable to cope with what had happened, she plunged into a deep depression. She suffered panic attacks and violent nightmares, and as is sometimes the case for those suffering from trauma, Holly found temporary solace in controlling what she ate. It started with the odd skipped meal, but within a year had developed into an all-consuming eating disorder.

Five years later, aged 18 and weighing not much more than five stone, she was sectioned under the Mental Health Act, and hospitalised for treatment. It was a dramatic intervention and one that undoubtedly saved her life, but in hindsight, she says, it came too late. "I'd got to a point by then where I was beyond help," she recalls. "By the time anyone properly intervened, I was trapped. Nothing my family or GP said could deter me from my obsession. I'd got to the point where as long as I starved myself, I was in control of my life."

By the time doctors did finally take action in Holly's five-year battle with anorexia, her weight was so low that she was deemed to be "at risk" – the risk in this case being death. The medical treatment she received may have saved her then, but the long-term damage is irreversible. Now 25, and working as a restaurant manager in Brighton, she suffers from osteoporosis, and has never menstruated; she pushed away her friends, failed her exams and was deprived of the hobbies, teenage crushes, and other experiences that help a person develop. She now finds it difficult making friends.

Holly believes she was failed by a health system that allowed her condition to go unnoticed for so long, and hopes that others won't suffer the same fate. But she may be disappointed. According to a recent government report, the number of girls in the UK hospitalised with anorexia nervosa has risen by 80 per cent in the past 10 years; the number of admissions among girls under 16 jumped from 256 in 1996-97 to 462 in 2006-07. It's not possible to tell from this statistic whether more girls are suffering from an eating disorder or whether it's just that more are being admitted to hospital, but either way, this is a very worrying report. And one that begs an obvious question.

If, as is perfectly clear, early intervention is the best way to ensure a positive outcome, why are so many cases being allowed to sneak under the radar until a patient is so seriously ill that they require hospital treatment? First stop, the Department of Health. Surely they can offer some insight into the state of care for eating disorders in the UK? Apparently not. When I contacted them, a spokesperson was unable to provide even the most basic of information. I was told they hold no record of how many people suffer from eating disorders in this country, and have no idea how many people are awaiting treatment.

"The only information the Government is collecting," explains Susan Ringwood, the chief executive of Beat (the charity formerly known as the Eating Disorders Association), "is at the most serious end of the spectrum, based on those gravely in need of medical attention, who require a hospital bed." Quite how the Government can assess the best route to tackle this serious and increasingly common problem without such basic information is anyone's guess.

When you consider that the Department of Health appears to have such a loose grip on the issue, it is hardly surprising to find that the procedure for dealing with eating disorders in GP surgeries is also in disarray. According to a shocking recent report produced by Beat, "only 15 per cent of patients felt their GPs understood their condition, or knew how to help them". From my own research – and the people I spoke to while writing this article – the failure of GPs to recognise and acknowledge an eating disorder has been a worrying and recurring theme. Thirty-one-year-old Aaron Asphar, a tele-sales worker from Brighton, told me he repeatedly sought treatment from his GP for anorexia and bulimia, and was told that all he needed to do was "eat a healthy, balanced meal". Natalia Rose, a 21-year-old recovering anorexic and now a Beat spokesperson, from Essex, managed to get referred for consultation with a specialist, but was told to get in touch again when she had "lost more weight".

Eating disorders are, of course, complex conditions, requiring specialist understanding. GPs cannot be expected to understand fully the intricacies of a patient's condition, or the best course of treatment – this level of diagnosis falls to the specialists. But in order to get to a specialist, one relies on a GP first diagnosing an eating disorder in its most basic form, and then making a referral for proper assessment. Clearly then, it is a big issue if a GP is unable to spot problems early on.

Steve Field, the chairman of the Royal College of General Practitioners, acknowledges the current state of eating-disorder treatment leaves a lot to be desired, but feels his profession is being unfairly blamed for what has been branded a serious shortfall in primary care. "Because of the secretive nature of anorexia and bulimia, it is often hard to work out what's going on," he explains. "The truth is that patients [with eating disorders] come to us every day of the week with a multitude of symptoms, but are rarely willing to tell us what's really happening. Even when asked about their eating habits directly, people with these conditions often keep the real problem to themselves. We want to listen and to help, but we are not mind readers and rely on people being open and honest about their problems."

GPs are expected to coordinate treatment for those they suspect have an eating disorder, but Field explains that this job has been made difficult by a lack of support. "Secondary services have been patchy over the years," he says, "and GPs have felt quite vulnerable. They haven't always had access to adequate information either." The spokesperson for the Department of Health accepts that it has needed to offer clearer instruction for GPs, and has commissioned "guidance from the National Institute for Health and Clinical Excellence on the treatment and management of anorexia and other eating disorders".

While the regularity with which GPs are failing to recognise that patients are struggling with an eating disorder might well beggar belief, it's clear that identifying a specific condition can be challenging for any doctor – not least because those suffering with eating disorders sometimes have an overlap of symptoms. For example, someone with anorexia can develop bulimic tendencies – and (more rarely) bulimia can also evolve into anorexia. Then, within the category of bulimia nervosa, there are different strands – some vomit, others purge in different ways. And besides all these, there are a whole host of rarer – "atypical" – disorders to consider.

But even if, despite the many obstacles, a patient is successfully diagnosed with an eating disorder, do not imagine that the problem ends there. Because of the enormous discrepancy between the demand for and availability of treatment services, once referred, one can still expect to find excessive waiting lists to see a specialist. Heather McCrindle, a 23-year-old mother of one from Scotland, was diagnosed with a binge-eating disorder, only to find she had to wait a year for a consultation. This is no rare event. Even fast-tracked cases can take months to get through the system.

Because of the widespread lack of data, it is impossible to be sure how many people are currently awaiting treatment, or how many people are suffering from eating disorders in the UK. Yet even a quick internet search reveals a huge community of people afflicted in one way or another. At one end of the spectrum there are the pro-anorexia (or Pro Ana) web forums, where members of a large network – consisting almost entirely of young girls – encourage each other in the quest for emaciation, often sharing tips on how to get through gruelling fasting regimes. At the other end, there are a number of heavily utilised support groups for those struggling to overcome varying degrees of anorexia, bulimia and binge-eating disorder.

Why are eating disorders so prevalent in Western society? Many are quick to blame the media, and a glance at the celebrity pages of any gossip magazine will illustrate why. Here, women's bodies, whether "too fat" or "too thin", are under constant scrutiny. The recent castigation of the American pop star Jessica Simpson – who dared to forego a two-hour-a-day, six-days-a-week personal training regime that enabled her to maintain a tiny size-6 figure, and shamelessly swelled to an unthinkable UK size 10 – is a case in point.

Janet Treasure, a professor of psychiatry and specialist in eating disorders at King's College London, has publicly condemned the "toxic" effect of this "size-zero culture". The result, she says, is "an environment in which eating disorders flourish". But this doesn't explain why some suffer and others don't. Plenty of people existing in this culture might feel the pressure, but not all of them resort to drastic action.

Susan Ringwood, Beat's chief executive, may have the answer. "We are learning much more about the causes [of anorexia and bulimia], which are complex," she says. "It seems that a number of factors need to come together for someone to be at risk. We are learning that many of the causes are hard-wired, a result of brain chemistry and genetic structuring." Such factors, combined with social pressures such as family life or global culture, raise the risk of someone developing an eating disorder. "Hard-wired factors can mean that people with eating disorders are extremely sensitive to adrenaline. This means they're in a heightened state of anxiety already, so any stressful environment that contributes to that anxiety could put them at increased risk."

Ringwood says this might help explain why those in competitive environments, such as highly academic institutions, seem prone to eating disorders. Ballet dancers, models and those with "a heightened sense of body image, for whom size is related with success," may also suffer accordingly. "We know that people with eating disorders often have a hard-wired drive for perfection, and a need to control their lives. These aren't character flaws, but for some people these traits are turned in on themselves in a destructive way. The real problem comes when someone is physically or mentally predisposed, then has added social pressures, which compounds their risk."

By way of explaining the link between size-zero culture and eating disorders, Ringwood adds: "Increasingly, these social factors are playing a more prominent part in people's lives, so to this extent we have seen an increase in eating disorders." Meanwhile, unofficially, the social preoccupation with diet and body-image has been linked with the paradoxical rise in obesity and anorexia. Perhaps because we are bombarded with confusing and conflicting messages about the dangers or benefits of any number of products and food groups – by advertisers, government bodies and frenzied media reports – we sometimes, in response, develop extreme ideas about what we eat.

There are still many mysteries and misconceptions surrounding the issue of eating disorders. For as long as they've been recognised, anorexia and bulimia have been widely considered a female affliction. Of the 1.1 million people that Beat estimates to suffer from anorexia and bulimia in Britain, 80 per cent of new cases are said to involve women between the ages of 12 and 20. But others are suffering too. When he admitted last year to a battle with bulimia, John Prescott spoke of a sense of shame and embarrassment, telling one newspaper: "People normally associate [an eating disorder] with young women – anorexic girls, models trying to keep their weight down, or women in stressful situations, like Princess Diana." While the recorded number of cases for men is much lower than women, it has been suggested that many males suffer in silence because they feel unable to admit their problem. The website Men Get Eating Disorders Too! (mengetedstoo.co.uk) features a number of personal stories from males who felt they had no other voice.

Coping with an eating disorder, whatever your gender, is difficult, and not something anyone should face alone. Holly feels she had no choice, that no one attempted to save her from a condition that, left untreated, escalated to a life sentence. Now back to a healthy weight, she is officially over the worst, but the long-term effect is tangible. "If someone had stepped in in time, I might even be living a normal life," she whispers, "but there was just too much ignorance to save me." Her voice begins to crack. "The doctors aren't the only ignorant ones," she continues. "There's this idea an eating disorder is somehow self-inflicted, that you just need to pull yourself together. Sometimes I feel like I am being asked to justify my condition. If you were me, what would you say?"

Nikki Hobbs, 18

Suffers from anorexia

Being anorexic is so closely bound with consciousness that it requires a certain level of emotional intelligence and maturity. I think mine developed in response to being admitted to hospital. I'd been unhappy and stressed for a while, and had lost weight – and while taking my GCSE exams, I collapsed, was taken to the doctor's and referred to an adolescent psychiatric ward as an anorexic inpatient. It was the worst place I could have been sent, as here I become preoccupied with food in a way I'd never been before. You're surrounded by people with a severe condition, some who don't want to get better. You not only battle with your own thoughts, but also of those who are a negative influence on you. When I left, I felt so angry and traumatised by what had been done to my body; it was like they wanted to feed me up and get me out. I wanted to get rid of everything they had done to me. Months later, I was sent to another specialist hospital as an outpatient, but had to return as an inpatient. I couldn't face that prospect, and ended up running away to stay with friends. My mum supported my decision, but had to face police and social workers who contested her. She was even officially removed as my nearest relative. My condition grew into a battle against the doctors. I'm now reluctant to seek treatment, but I can't carry on living like this. I regret so much what my family has been through, and think that if I'd been treated better, my life wouldn't be the way it is.

Aaron Asphar, 31

Suffers from anorexia and bulimia

Eating disorders are seen as a female affliction, which makes dealing with my condition particularly difficult. The first time I saw a GP, I was told that a "fit young man" such as myself just needed to eat a healthy, balanced diet, and that I'd be fine. My problem started in 2005, when I spent Christmas Day alone. I was pretty miserable, and my mum sent me a hamper of food. I had nothing to do, so I ate until I felt horribly full, then it occurred to me to make myself vomit. This became a regular thing, but with time, I became more conscious of what I was eating. Within a year, my bulimia evolved into anorexia. My weight fell to six-and-a-half stone, and in 2008 I decided to seek treatment. It was like hitting my head against a brick wall. My GP adopted a strange and patronising discourse, obviously moulded for communicating with a young girl. I was told my problem was depression; it was not acknowledged that this was an eating disorder, even when I told my doctor in no uncertain terms. There seemed to be a complete lack of understanding, like I needed to be a sack of bones to prove I was ill. I demanded a blood test and the results showed years of starvation and severe bouts of binging and purging had sent my body into turmoil. I had high cholesterol, severe metabolic abnormalities and hypocalcaemia. Eventually this enabled me to get a place at The Priory but, in my opinion, my doctor's blindness could have cost me dearly.

Heather McCrindle, 23

Suffers from binge-eating disorder

At the age of 18, I was 5ft 6in and weighed six stone. I'd always been overweight as a child and when I was 15 I put a lot of pressure on myself to get thin. It started as a regular diet, then slowly I reduced what I was eating, until three years later, I was eating nothing. I didn't think I had a problem, and the more people said how thin I looked, the better I felt. I felt so in control, like nothing could stop me. One day, I was going about my life and for some reason I ate something that my anorexic mind said I shouldn't have. Suddenly, I wasn't in control any more. Something fired off, and I knew I had to get rid of it in another way, and that's when the bulimia started. I wanted to be healthy, but in my mind it was this, or be fat again. Then I fell pregnant. Because of the morning sickness, I didn't feel the urge to make myself vomit any more. But the binges never stopped. Now I will eat as much as I can; sometimes I go out specially to buy things for a binge and eat until I feel sick. Even when I was pregnant, my doctors didn't pick up on what was happening; maybe if they had it would have made a difference. Last February, I decided to seek help, and began treatment in December. My condition went unnoticed for years, but even if it had been picked up in the final stages of my anorexia, I'm not sure I'd have accepted help. I was too far gone by that stage, and something needed to give.

Natalia Rose, 21

Recovering from anorexia and bulimia

If I had a broken arm, someone would say, "How are you?" But when I say, "I've got an eating disorder," people shy away from me. When I was 14 years old, I was violently attacked by a man. I fell into depression, and soon anorexia became my coping mechanism. I'd never weighed myself or paid much attention to the way I looked before, but suddenly it was an issue to be thin and perfect. Soon I was skipping meals and making myself sick when I did eat. No one suspected for a year. I became very cunning and hid my condition well. My parents eventually noticed that I was wearing baggy clothes, and disappearing after each meal. When my mum confronted me, I told her. It was a relief in a way, but I lost the control I'd had, as suddenly others were in charge of what I was doing. My mum came with me to my GP and explained what was happening. At first I was told to come back when I'd lost more weight. The waiting list for treatment was two years long. Instead, I was put in another group-therapy class for people with relationship troubles. I felt angry and upset, like I was stuck in this little piece of hell of mine, and there was nothing I could do. Eventually I went to a private hospital for a consultation with a psychiatrist, which was expensive but worth the money. Recovery takes a long time, and at the age of 20 I was admitted to The Priory. I was still suffering from anorexia and bulimia, and started to have heart problems. I'm now a lot better and live a happy, full life. I had to pay someone to listen and to help me, but I got my life back in the end.

Professor Janet Treasure is seeking participants for a variety of research projects into all aspects of eating disorders. If you think you could help, please contact f.bishopp@iop.kcl.ac.uk

Eating disorders: The facts

Eating disorders are serious – and potentially fatal – mental illnesses. They take the form of a persistent pattern of unhealthy eating or dieting that can cause health problems and/or emotional distress. Though eating disorders are treatable, the chances of sufferers making a good recovery are far higher if they are caught early. There are three official categories: anorexia nervosa, bulimia nervosa, and Eating Disorder Not Otherwise Specified.

Anorexia nervosa

Although probably the most commonly recognised, anorexia is the rarest of eating disorders, accounting for just 10 per cent of cases. It typically affects those between the ages of 12 and 20. Sufferers have low body weight, commonly less than 86 per cent of that expected. There are two sub-types: the restricting type, where people maintain a low body weight by restricting food intake and sometimes by exercise; and the binge-eating/purging type, where food restriction is accompanied by binge-eating and/or purging, such as self-induced vomiting and/or the misuse of laxatives, diuretics or enemas. Many people move between sub-types during the course of their illness. The long-term effects of anorexia include osteoporosis and infertility.

Bulimia nervosa

Accounting for 40 per cent of eating-disorder cases, bulimia commonly starts in adolescence and typically affects 18- to 25-year-olds. Sufferers tend to have a preoccupation with body image, and often feel this defines their self-worth. Bulimia is marked by binge-eating episodes, where a large quantity of food is consumed within a couple of hours. During a binge, a bulimic will feel a terrible loss of control, and after excessive eating will seek to counteract what he or she has consumed in one of a number of ways. Those suffering from the purging type will self-induce vomiting, or use laxatives, diuretics or enemas. The non-purging type refers to those who compensate through exercise or dietary fasting. Side effects include heart and dental problems.

Eating Disorder: Not Otherwise Specified

Potentially as dangerous as anorexia or bulimia, Ednos defines those without a full set of symptoms for either condition, but who may have aspects of both. Binge-eating disorder is a common Ednos – sufferers engage in binge-eating sessions but do not use inappropriate, unhealthy weight-control behaviour, such as fasting or purging, to counteract the binges.

For help and advice , visit b-eat.co.uk

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