And Thank You For Watching

by Mark Austin

  It was Maddy’s school housemistress, Andrea Saxel, who decided enough was enough. I took a call from her at home one day, and she told me very directly that she was extremely worried about Maddy. She knew the signs and believed that my daughter was in the grip of anorexia. Maddy needed help and quickly.

  I immediately made an appointment with our local GP and drove over to the school to pick her up. When I arrived, she was in Mrs Saxel’s office, tearful and frightened. But, as I was to find out, not frightened enough to pull herself out of it. That, by the way, was mistake number one: ‘pull yourself out of it’ is not a demand that sits well with an anorexic.

  We drove in silence to the GP, who was understanding and sympathetic. She weighed Maddy and then asked me if she could speak to her alone. I have no idea what was said between them. What I do know is that within a couple of weeks we were sitting in front of an eating disorder specialist at a local hospital in Farnham, and the news wasn’t good.

  She had spent about an hour with Maddy before we were called in, and it was all very matter of fact: ‘Maddy is very unwell and my diagnosis is anorexia nervosa. It is not dangerous at the moment, though it could become so. But I am hopeful that with the right treatment she can make quite a quick recovery. It won’t be easy though. I have to warn you.’

  My wife Catherine – an A & E doctor − knew how serious this was, but kept calm and asked quite detailed medical questions. I was determined that I could shake my daughter out of it and make her see sense. That was mistake number two. There was no question of ‘making her see sense’. By now, sense to her was not eating; sense to her was to take as much exercise as possible. And sense to her was that we, her parents, were now the enemy.

  We wanted to make her do what she implacably did not want to do. She did not want us or the specialist, or anyone in that unit, to be in her life. She was, in short, on a very rapid path to self-destruction.

  The specialist had talked about the ‘right treatment’. It was to prove the beginning of a very steep learning curve. Talking about the right treatment was one thing. Being able to access it, or even identify what it should be, was something else altogether. Maddy was given an appointment once a fortnight where she would go in and get weighed and talk to a nutritionist if one was available. They would give her a meal plan and advise her on how to cope and start eating again. That was it.

  It was to make very little difference. Maddy – or rather this demon called anorexia that now possessed her – was absolutely determined to limit her intake of food to just a few calories a day. Calorie counting and food avoidance became the dominant theme of her life. Very quickly she became horribly thin, adamantly uncommunicative and intransigent.

  Mealtimes became a battleground, arguments became ever more bitter and our relationship became toxic, if you could even call it a relationship. I was shut out of her life. It was poisonous and terrifying. I was convinced I was watching her slow, inexorable death.

  She was there, but she was gone. It is the only way I can describe it, really. She was alive but she was dead. Dead inside. Wasting away. The daughter we loved so much had left us to be replaced by an emaciated, ghost-like figure we could never recognize as Maddy. And it all happened so quickly. One moment she was a vibrant, strong, energetic and beautiful young girl. The next, she had begun the rapid, dangerous descent towards self-destruction. That’s what anorexia does.

  I didn’t understand it at first. Cancer I understand. Diseased cells multiplying, spreading, invading and destroying. But this was my daughter wilfully destroying herself by not eating, or at least by not eating enough. At first, I thought it was crass, insensitive, selfish and pathetic. Until I began to understand. And I deliberately say ‘began’ to understand, because even now, several years on, I don’t really understand. Not fully. Not really.

  I remember once that Maddy seemed to relent. We were having breakfast one day and she asked if I wanted porridge. I jumped at the chance and said I’d love some. She wanted to make it and I watched her pour the porridge oats into a saucepan of water rather than milk. I urged her to put some milk in and she relented, but she only put in the bare minimum. I noticed a jar of clotted cream in the fridge and thought that if I got the chance I would pour it all in without her knowing. I didn’t get the chance, of course. She was protective and watchful. This was porridge on her terms, and nothing would change that. In the event it was a small victory, but it didn’t last.

  Maddy seemed hellbent on self-destruction and it broke my heart. The daughter I thought I knew became remote, conniving and filled with cunning. She would do anything to avoid eating. She would lie and lie again, and then explode with rage if we challenged her. She was abusive and vile, and seemed possessed by something she could not control – or worse, did not want to control.

  She showered me with contempt. I couldn’t say anything to her about it because she was in total denial. As a parent, you have to make a decision, and I made the wrong one. I decided to go on the attack. I told her she was being ridiculous. I told her to get a grip and grow up. And I told her to ‘just bloody well eat, for Christ’s sake’.

  I drew a parallel to the appalling plight of family friends who had a young daughter who had passed away from leukaemia. ‘She didn’t make a choice, did she?’ I said. ‘She was desperate to live but despite all the medical help available, she couldn’t. That is a tragedy. But you, you are doing it to yourself.’

  On one terrible night, as she lay on the kitchen floor in front of the Aga, I said something I bitterly regret. She was refusing to get up for dinner and was curled up there for warmth. Anorexics get so cold. Maddie was only interested in a cup of hot tea. I told her she was going to kill herself and then I said it: ‘And if you really want to starve yourself to death, just get on with it.’

  ‘If you really want to starve yourself, just get on with it.’ Was I really saying that to the daughter I loved?

  And here’s the worst thing about it. For a moment, for one ghastly split second I think I actually meant it. I was exasperated and at my wits’ end. I wanted the whole dreadful situation just to go away.

  She didn’t respond at all, which only made things worse. Within moments I wished I hadn’t said it. But it was too late. I still don’t know what she thought about hearing her father say that. I am not even sure she remembers. I hope she appreciates now it was me talking to anorexia and not Maddy.

  But I began to think this was going to destroy me as well as her. The fact remained I was her battering ram. Everything I did and said was wrong. I couldn’t bear it.

  What I failed utterly to grasp was that she was seriously mentally ill and could not see a future for herself. Not grasping that was a big mistake. Once you accept it is a mental illness and should be treated as such, it is somehow easier to accept. Without understanding that, you forever think it is simply a case of getting food down her neck. It is so much more complicated than that, and I did not appreciate that.

  Things worsened, and we tried to get her into the local eating disorder unit as a day patient. They didn’t have any places. We were desperate. We were totally failing to treat her or help her at home. My wife was becoming ill herself from the stress of it all. Imagine being a doctor, a job you’ve chosen because you want to help and care for people and make them better. And yet you can’t even help your own daughter. You can’t treat her. Imagine that. That is what my wife went through. She struggled to cope. In fact, she couldn’t cope. Neither of us could.

  Maddy urgently needed help and treatment. But what treatment and where? We hit problems right from the start. The main problem, it seemed to me, was that she needed rapid, early and significant medical intervention. But she couldn’t get it because she wasn’t acutely ill enough to warrant a hospital bed. She wasn’t thin enough to trigger admission to a full-time eating disorder unit. And, at eighteen, she wasn’t young enough to qualify for children’s mental health treatment.

  Just think about that. Not ill enough. One would have t
hought that enough was now known about the predictable path of anorexia that the most sensible and economically sound response would be quick and intensive intervention by trained doctors and psychiatrists. But the fact is there are not the resources for that. Her GP was a lifeline, but the best we could get early on were fairly regular outpatient specialist appointments that came and went with no real apparent improvement.

  Maddy would say exactly what the specialist wanted to hear, would somehow find ways to boost her weight just before appointments and then starve herself again afterwards. And because she was eighteen, we had no legal power to make her go anywhere for treatment or do anything. We had no access to her medical records unless she gave express permission. At one stage I was told she would have to be an inpatient in a local adult facility, being treated alongside very ill, long-term mental health patients with severe problems. That would have been disastrous.

  It was hopeless. And here’s the thing. If our family, with an A & E doctor and a pushy journalist who can quite often get things done, starts to crack and fall apart, what hope is there for other families battling the system? What hope for single parents? What hope for those unable to afford private medical help? ‘No hope’ is the answer as it currently stands.

  It quickly became clear that the only option was private inpatient treatment. It costs thousands of pounds a week. So the fact is it is out of reach for the vast majority of people in this country. We had health insurance, but the money quickly runs out under most schemes; it would only cover a quarter of the four to six months that we were told was the least Maddy needed. But, fortunately, we had the money. We would make it work.

  The unit did its best, but this was a very expensive regime of forced feeding, no exercise (you could only climb the stairs to go to bed at night), accompanied toilet visits to prevent patients throwing up the food consumed, and monitored sleep to make sure they didn’t exercise while in bed.

  It was probably what Maddy needed, but it was a disaster. She was put in a cramped dormitory with eight other girls, all of whom seemed intent on bucking the system somehow and taking in as little food as possible. They would also exercise in the beds, keep the windows open so they would shiver, and constantly go to the toilet, where some of them locked the door and, out of sight of the nurse supposed to keep an eye on them, would jog on the spot in the loo for several minutes. It was crazy. Maddy actually deteriorated there, or at least her mental state certainly did.

  We could see Maddy becoming more and more depressed and we decided it was the wrong place at the wrong time. She resisted it and hated it and threatened to kill herself. There had already been one recent suicide there and we didn’t want another. I told the people who ran the unit that I would be taking her out. It caused huge problems. A senior doctor was summoned and he told me it would be highly irresponsible to do so. She was too thin and too weak to leave their care. I phoned my wife to tell her that they were insisting Maddy stayed. She wanted her home. The doctor then threatened to section Maddy. That would have involved calling the police and going through a legal process to detain her; and that would be on her record forever and have implications for the rest of her life. It was not going to happen. I gathered up Maddy’s things, put them and her in the car and we fled.

  On the journey home, Maddy was weak and looked very unwell. I worried it was a huge mistake. I even thought about taking her straight to A & E. In the end, I decided to take her home. Catherine had set up a monitoring system in Maddy’s bedroom and had moved a mattress alongside her bed. It resembled a hospital emergency room. Catherine would sleep there until it was safe to leave her. She would check her heart rate regularly. The real danger at that time was heart failure. Her organs were slowly giving up on her. We felt alone and vulnerable and abandoned − and this is with a doctor in the family. How on earth other parents cope, I simply do not know.

  The impact of all this on families is devastating. As a father I remember feeling lost, excluded and reviled. I didn’t grasp the issues of body image and weight control and I found them difficult to talk about. I floundered, and in the process, I think, ended up poisoning her against me still further.

  And all the while, Maddy was shrinking away. She was painfully thin, constantly pale and cold, so cold all the time. Her arms and legs became stick-like, her face gaunt, her eyes hollow. Her skin was blistering, her bones were increasingly brittle. Her body was closing down. We were watching her slowly die and we could do nothing about it.

  We soon had a breakthrough of sorts. The day patient unit at the local hospital in Farnham finally had a place for her. She would be picked up by ambulance in the morning, have breakfast and lunch under supervision at the unit and various sessions of counselling. She would be home for dinner and at weekends. It didn’t make much difference at first. Maddy would eat very little at home because she was forced to eat substantial meals at the unit during the week.

  She also began getting up early and disappearing for walks. Initially it would be twenty minutes or so, but eventually she would be gone for a couple of hours. Morning after morning she would do this. I would get up at 5.00 a.m. and go into her room to persuade her not to go. I locked doors and hid keys, but she always found a way out. She started going out earlier and earlier – 4.30 a.m., 4.00 a.m., then 3.30 a.m. She would go whatever the weather. She would walk in rain and bitter cold. I remember waking one morning with thick snow covering the garden. Her footprints marked the route she had taken. I will never forget seeing that. It was 5.30 a.m. and my sick, frail, desperately thin daughter was crossing some field or walking along some wooded path, all alone, vulnerable and consumed by this terrible thing called anorexia.

  I never imagined for a moment I would write about this. I have covered war, atrocity, famine and natural disasters the world over, and I am paid to find the words to describe what I witness. But when a crisis comes crashing headlong into your own family, when the life-and-death struggle is your own flesh and blood? No thanks. Too close. Too raw. Too uncomfortable. Too exposing. Too self-important, even. This we kept quiet about.

  But the truth is I can’t keep quiet about it, and I won’t keep quiet about it because something needs to be done to help the victims of anorexia. As a country, our response is bordering on the pathetic. It is a mental illness like all the others. And, almost uniquely, it is a mental illness that can directly kill.

  And Maddy was continuing to weaken. She had developed bone marrow failure and was covered in sores as her skin was breaking down. She hadn’t had a period for months. Her body was ceasing to function.

  I was presenting News at Ten each night, trying to concentrate on what I was supposed to be reading but in truth thinking only of Maddy and whether she would survive the night. She was five and half stone, down from nine and a half. Things were bleak.

  Then, mercifully, and almost from nowhere, things began to improve. The work being done by the nurses and key workers at the day unit was beginning to pay off and have an impact. It was tough when it had to be, gentle and cajoling at other times. It was run by good people who cared and it probably saved her life.

  Maddy had also made a decision. She wanted to get better. It was the first time she had said that and meant it.

  Maddy spent a year there, slowly regaining weight, but that wasn’t the end of it. Afterwards she was left with debilitating depression. Even though she put weight back on, she didn’t think she would get better. It frightened her. But, gradually, she did.

  Looking back, Maddy traces the beginning of her recovery to a key worker and counsellor called Debbie. Debbie had told her at the end of one session that Maddy had three choices. She could either just carry on as she was and never get better. She could give up altogether and just die. Or she could make the choice to get better and recover. Maddy says it was a pivotal conversation and she vowed to try to get better.

  We’d found a place run by the NHS that happened to be local to us and where she finally began to improve. We were lucky, so lucky to
find it, and she was lucky to get a place there. It has limited resources but at least it exists. But my point is this: what happens to those who don’t find a place like that? And why are there not more places like it? Most sufferers, it seems to me, are left to fall through the cracks in an inadequately resourced and financed system.

  This was tragically illustrated in a Channel 4 documentary Maddy and I made after her recovery. We told the awful story of Lydia, a girl the same age as Maddy, at the same stage of the illness but who failed to find any significant treatment at all. While Maddy was being treated at Farnham in the day unit, Lydia was effectively abandoned. She had the misfortune to live in Norfolk, where the provision for eating disorders was poor. She was being seen, when possible, by a psychotherapist who was overworked and sometimes couldn’t fulfil appointments. Following two cancelled appointments and one brief phone call, she disappeared one afternoon after saying she was going for a walk. Her body was found at the foot of Hunstanton Cliffs. It is a desperately sad story. It made Maddy very angry.

  In an interview for the documentary, she confronted the health secretary, Jeremy Hunt, put the Lydia case to him and said, ‘It’s supposed to be a National Health Service not a National Lottery.’ It was a fair point. The provision of care for eating disorders in the UK is a lottery. And very few win it. We found case after case of young women, and men, who were failed by the system. In fact, you can’t really call it a system. There is no system. It is patchwork, ad hoc and inadequate.

  Mental health problems in teenagers is the epidemic of our age. And despite promises, successive governments are not treating it like an epidemic. More than 850,000 children and young people have been diagnosed with mental health problems in the UK, and how many more have had no formal diagnosis but still suffer, often in silence, unwilling to share their despair?