Here is my first and very rough draft introduction for my next book: When anorexia came to visit: Families talk about how eating disorders invaded their lives. So, if you're interested in knowing what this new book is about, the following pretty much sums it up. (It's still a draft and I need to check my facts and sources, but it'll give you a good idea.)
At the beginning of October 2009 I took my 15 year old “big, burly” rugby-playing son, Ben, to see the GP.
Over the summer months he’d been cutting back on his food, reducing his fat intake and doing excessive amounts of exercise. He’d cut himself off from his friends, was becoming obsessed with cooking and baking, and appeared to be getting more and more depressed. When his grandmother visited in mid-September, not having seen him for several months, she remarked on how thin and pale he looked. Because my husband and I had been with Ben all summer long we hadn’t noticed the dramatic change. We knew Ben was behaving weirdly and that he was losing weight, but we really thought he’d shake it off once he was back at school and on the rugby pitch.
But things got worse rather than better.
So I took Ben to see our GP.
Something at the back of my mind told me that Ben could be developing an eating disorder, but this seemed really strange to me. After all, as far as I knew, boys didn’t get eating disorders, especially rugby-playing boys like Ben. Also, he’d been brought up in a loving, stable environment. He was extremely happy at school, was very bright and popular with everyone. All this flew in the face of the kind of teenager that I believed developed anorexia. And, anyway, weren’t anorexics skeletal? Like the girl I used to see at the gym who everyone used to whisper about.
Ben didn’t want to go to the GP. He didn’t think anything was wrong with him and he made sure the GP knew this. It took several more visits before we got Ben referred for treatment at CAMHS (Child & Adolescent Mental Health Services), and only then when the school nurse insisted we get a referral. The GP never mentioned what help was available. Indeed he never diagnosed Ben as having an eating disorder.
Every family I have talked with for this book has described this period in exactly the same way. Initially the eating disorder emerges so gradually you scarcely notice anything, especially when you’re with your child all the time. And anyway – boy or girl – you just don’t expect your normal, happy, level-headed child to get anorexia.
Around the time that you begin to get sufficiently concerned to take your child to see the GP things suddenly take a turn for the worse. And the deterioration is so rapid at this point that you can scarcely catch your breath. By this stage it’s as if your child is transforming by the hour, not by the week or month. Eating gets worse or stops altogether, exercising goes stratospheric and, mentally, your child morphs into someone you don’t recognise. It’s almost as if your child has become “possessed”, which is why we always referred to Ben’s anorexia as the “anorexia demon”.
At this point it is vital that your child gets into treatment immediately. Thankfully most of the families I talked to were fortunate enough to wait no more than a week or so before they saw a specialist. With some, it was just days, especially those children whose downward spiral had rapidly made them so sick they ended up in hospital.
Also, thankfully, our own story from this point onwards seems atypical. Ben was referred to CAMHS on the 11th November 2009, five or six weeks after I first took him to see the GP. By now he had lost approximately one quarter of his bodyweight. But herein lies another niggle. In the UK children’s heights and weights are rarely, if ever, measured after babyhood. So there are usually no records for comparison. Ben’s class at school had worked out BMIs in a PSHE lesson at some point when he was 14 or 15, so this is the BMI I was going by. But the GP had no records of Ben’s adolescent weight or height. And, because Ben didn’t look skeletal and was in complete denial that there was a problem, I suspect the alarm bells weren’t going off. Also, our GP might have been unaware that – yes – boys do get eating disorders.
Meanwhile Ben was continuing to insist that he didn’t have a problem, smiling and saying calmly: “I’m fine. I really don’t know what my mum’s worrying about.” On the final visit to the GP he got so agitated that he stood up, swore and walked out of the surgery.
During the compiling of this book I talked to a local GP to get an idea of how much awareness UK GPs actually have of eating disorders. She told me that, as a medical student at Cambridge, she’d probably had two lectures on eating disorders as part of a psychiatry module. She told me that, as far as she was aware, medical students receive no further organised training but that “if you have an interest then you will look it up”.
Also, as far as she was aware, there wasn’t a GP in our (city suburban) practice that had “done psychiatry”.
She added: “As a GP you just see what crops up. I mean, we’re a middle class, educated GP practice so we might see more eating disorders in middle class well educated girls (and boys) than, say, somewhere with a different demographic. But I don’t know how many eating disorder patients we see or if anyone particularly specialises in it. I do know that we don’t see eating disorders very often; GPs’ time is so pressured that, as a GP, you tend to read more about what you see more of. But if ever I had anyone with an eating disorder and I felt out my depth then I would do more reading on the subject.”
The thing is, as a parent, you expect your GP to be clued up on what they’re dealing with. So if they’re not picking up on something as being urgent, as was the case with Ben’s diagnosis, then you automatically assume they must be right. After all, they’re the professionals. I remember wondering: Am I imagining it? Is it all in my mind? Am I just being the “over-protective” mother?
I expected the CAMHS appointment to come through pretty quickly. In the event it was another three weeks before a letter came through. I immediately called CAMHS to make an appointment only to be told we’d be put onto a waiting list for an assessment – and that it could mean a wait of anything from 18 to 22 weeks. Meanwhile it was as if Ben was disappearing off a cliff. I was terrified.
“Good God, he got seen faster when he broke his nose in rugby!” I remember telling my sister. “18 to 22 weeks is around five months!” I looked back to where we were five months earlier in June. With an eating disorder a lot can happen in five months. “In June we didn’t even know Ben was getting sick!” I told my sister. “Look how far he’s gone downhill since then. Imagine what another five months could do to him? And to us? What if Ben spirals even further downhill?”
But, apparently, there was nothing anyone could do. It was a case of waiting – or going private.
In a fit of desperation we brought in a private therapist who did her level best to stop the rot. But I remember thinking that it was a bit like trying to plug the hole in the Titanic with cotton wool. Ben just spiralled further and further into the abyss.
Then at the end of January 2010, his pulse plummeted to a dangerously low 29bpm and he was rushed into the cardio ward of our big city hospital. It was my lowest point so far. As I looked at my pale, thin son lying there, hooked up to machines, tears streaming down his face as they attempted – and failed several times – to take blood samples, I really thought my son was going to die.
Nowadays I know that Bradycardia (abnormally low pulse rate) is one of the many symptoms of anorexia. I also know that sudden heart failure is one of the biggest causes of deaths from anorexia. But, despite this, the clinicians on Ben’s ward seemed unaware of this link, preferring to attribute this “unusual” spike in Ben’s pulse rate to the fact that Ben was very sporty. Yes, Ben was very sporty by this point. But only because the illness was driving him to exercise like mad, virtually round the clock. Not once did anyone in the hospital suggest that Ben needed to be rushed into treatment for his eating disorder.
The first thing I did when we got home was to phone CAMHS and insist that Ben was seen right away. I was so desperate on the phone that they got a psychiatrist to call me back. She arrange for Ben to be seen within the week.
So, some four months after I’d first taken Ben to see our GP, we were sitting in front of CAMHS.
Thankfully, as I have said above, it looks as if our story is a-typical. I did wonder if it was because Ben is a boy, not a girl, and the medical profession simply didn’t expect boys to get eating disorders. But I’ve talked to families of boys as well as girls, and we still appear to have waited the longest for treatment.
Another thing families assume is that, once treatment starts, their child’s illness will be fixed quite quickly.
Unfortunately recovery from anorexia can take months, sometimes years.
What the following accounts do show, however, is that when you have a highly knowledgeable and coordinated treatment team that’s pulling out all the stops to free your child from anorexia, with clinicians that realise that parents are a vital part of the mix, not an irritating or expendable appendage, recovery appears to come sooner rather than later. It is also important to have a treatment team that focuses on the need to re-feed first and foremost, and to insist that the child eats everything that is put in front of them rather than allowing the child to get by with “safe” foods. “Tough love” also seems to work better than the “softly, softly” approach. By this I don’t mean bullying; just gentle but firm encouragement and a refusal to allow the eating disorder to win – because, given half the chance, the eating disorder will try to consume your child.
But of course the following is only a small snapshot of families’ experiences in the UK; other families’ stories might be different. Also, this isn’t a study of which treatment methods work better than others, which is why I haven’t gone into this in too much detail in the paragraph above.
What this book is, however, is a vehicle to highlight the need for swift diagnosis and intervention for eating disorders in adolescents – and for an informed, coordinated approach to treatment. It also highlights what families are going through at home. After all, unless their child is in hospital, they are with their son or daughter round the clock. The clinicians only see them for 60 minutes or so a week.
Also, parents know their child better than anyone else. The sheer strength of the parental instinct should never be dismissed lightly. Parents should always be taken seriously and included in their child’s treatment.
I am a mentor on the Around The Dinner Table Forum, run by the global eating disorders charity FEAST (Families Empowered and Supporting Treatment of Eating Disorders). Many of the families in this book say this forum was a lifesaver for them. A regular question on the forum is: “How do I get my child to eat?” You have been given an eating plan and you know what you need to get your child to eat in order to put on weight. The trouble is, your child refuses to eat. Some children even threaten to run away or kill themselves rather than eat.
One of the mums I talked to eventually managed to persuade the CAMHS dietician to come into her home and show her how to get her daughter to eat. They gave her a few simple tips on what to do, but it made all the difference. So much so that she believes that, had she been shown how to do this sooner, it could have saved the NHS months of costly inpatient treatment for her child.
When you realise that your child is developing this terrifying illness one of your first instincts is to learn as much as you possibly can. I always say that my university degree was a walk in the park compared with the cramming I did on eating disorders in those dark days as Ben plummeted into the illness and we began treatment with CAMHS.
The result is that we parents often know a heck of a lot about the illness and the latest evidence-based treatment which is being rolled out across the world. Some of us have attended conferences where we’ve listened to the Great and the Good of the Eating Disorders World share their knowledge with us. We also have a limitless supply of knowledge that comes from our FEAST and ATDT network across the world, made possible by the power of the Internet.
In other words, we parents are a force to be reckoned with and need to be taken seriously by the medical profession. We need to be listened to and we need to be as much part of our child’s treatment team as the psychiatrist, psychologist or dietician. The medical profession needs to realise that, in many instances, we probably know more than them. This is clearly the case at GP level, for instance, and in other non-psychiatric specialisms.
Another thing this book does is highlight the signs of an emerging eating disorder. None of the parents in this book expected their child to develop an eating disorder. It was always something that “happened to other families”. Many of us held the outdated beliefs that anorexics come from dysfunctional families. Thankfully these days we know that anorexia is a biological brain-based illness. In some cases, it is also thought to be heritable. Interestingly, a number of the accounts in this book describe relatives who have also suffered from an eating disorder.
The point is that when you don’t expect your child to get an eating disorder you are not watching out for signs. And anorexia can develop so gradually, sometimes for months or even years before any unusual signs begin to show. By the time the penny drops your child’s illness can be quite advanced, which is why this book places emphasis on what families were seeing and what, in hindsight, turned out to be clear signs of an emerging eating disorder.
Finally, as its name suggests, CAMHS is a service for children and adolescents. All too often when a child reaches the age of 17 or 18 they are discharged from CAMHS and either passed onto Adult Services or left to fend for themselves because they are considered to be “recovered”. At this stage vital continuity of care can be cut, sometimes with devastating results. Many of us will have read accounts in the media of young people who were discharged from care at the age of 18 and, because they were now adults, were permitted to make their own decision as to whether or not they received further treatment. Young people have died as a result. Never forget that anorexia has the highest mortality rate of any mental health condition; the charity BEAT says that research shows that one in five eating disorder sufferers will remain chronically ill (Steinhausen, 2002).
The accounts in this book show that outstanding coordination and teamwork can achieve positive results. One account demonstrates how, even when the child was in hospital, her local CAMHS team visited the hospital to keep up to speed with proceedings, as did her GP and even her schoolteachers. This way seamless continuity of care could be ensured once she was discharged from hospital. And it worked. That family’s story is a success story.
So it makes sense that a young person is treated by the same team throughout the entire duration of their illness. Age should not be taken into account. Lives are at stake, as are valuable NHS funds which are being wasted.
And no family wants their child to suffer from an eating disorder longer than they need to.
So how is my son, Ben, today? Ben was discharged from CAMHS, aged 18, after 26 months of treatment. He was discharged because he was 18 but also because his psychiatrist was leaving. He wasn’t referred onto Adult Services.
Curiously he was virtually the same weight on the final day of CAMHS as he was on the very first day, so I knew that we still had some way to go to get his weight back up to its pre-anorexia levels. Ben’s food intake had changed dramatically; by the end of CAMHS treatment he was eating a perfectly balanced diet which, I believe, helped to improve his mood and heal his brain. But there was still a string of outstanding issues in addition to the sub-optimal weight, primarily extreme social anxiety and the ever-present fear of getting fat.
Over the next 12 months he and I worked on these issues together. It’s been slow progress, but we are getting there. If we’d have had strong, no-compromise clinical support in getting Ben back to his pre-anorexia weight and working on the outstanding cognitive issues, then I believe we would have got there quicker. But so many young people are permitted to remain at a sub-optimal weight and I, and many others, believe that recovery can never truly happen unless the patient is fully weight restored.
And, once a patient reaches 18 and is legally permitted to choose what they do next, there is very little that the family can do except continue to encourage their child and hope that they will eventually fully recover to lead a one hundred per cent anorexia free life.