I’ve been prompted to write our story since the #HelpFaithHeal campaign, which is desperately trying to get a young girl the treatment she needs. From our Twitter campaign, Sarah Marsh, a journalist for The Guardian, wanted to help, publishing this request for people to provide their experiences of eating disorder treatment here in the UK. Please complete it if you have any experiences to share!
The following is our story, as sent to The Guardian:
My now adult daughter, who’s almost 26, has suffered from Depression and Anxiety since she was around 11. To my shame, I didn’t recognise that at the time – she hid it well. Admittedly I was a bit distracted then as her dad and I were going through a bad time, and then he was diagnosed with cancer and had to undergo intensive chemotherapy treatment. That pulled us together for a while, and the chemo saved his life, but sadly our marriage failed a year or so later.
When she was 11, as all the above was going on, she turned vegetarian. I didn’t know then that this was most likely the first sign of food restriction; the first sign of an eating disorder.
By the time she was 14, family circumstances and my full-time job in Eastbourne meant that I had to move from the Rye area, meaning a change in secondary school for her at a very vulnerable stage in her life. I knew that this would be hard for her as she was always an anxious, highly sensitive child, whereas my younger son was very sociable, quickly settling into his primary school.
Within weeks of starting at her new school in September 2006, I could see the weight loss begin. At first I didn’t worry – it’s just a way of being accepted by new friends, isn’t it? And family kept complimenting her on her weight loss. Not that she was ever overweight in the first place! I soon learnt that those compliments just fuelled the eating disorder.
It transpired later that a girl was encouraging my daughter to throw her lunches away. Not that she needed much encouragement! This girl turned out to be a controlling bully, but the school dealt with the situation well in the end, separating them, whilst trying to support my daughter with her illness.
By Christmas, I was really worrying. The weight loss was rapid. Her patterns had changed. Instead of bathing early in the evening and getting into her PJs before supper, she started bathing after supper, spending a long time in the bathroom. My instincts were on fire – I was really worrying! What was happening to my beautiful daughter? Her mood had changed, she was low and snappy, and appeared scared of certain foods.
So I talked to a friend who, coincidentally, was an eating disorder therapist. She told me I had to wait for my daughter to want to eat, which was the worst advice I could have been told! To be fair to her, she did say that it may be different for children as she worked with adults. But that’s bad advice for adults, too, it turns out.
I know now that when you have a restrictive eating disorder like Anorexia Nervosa, you never ‘want’ to eat. You must be cajoled, gently and lovingly, but firmly, and with strong boundaries in place and consequences for not eating. If only I’d known that then. It gets harder when they turn 18. Instead, I kept trusting the ‘professionals’, even when they kept letting us down.
My daughter was finally diagnosed the following March 2007, by which time she was 15. The only way I could get her to the GP was to find an ‘excuse’, because she refused to go otherwise, saying nothing was wrong. The excuse soon came. By mid-February her skin and eyes turned yellow from the strain on her liver from the lack of food, purging, and rapid weight loss.
Our GP was wonderful. He admitted that he didn’t know much about eating disorders and immediately referred her to CAMHS – Child and Adolescent Mental Health Services. Back then, appointments happened fairly quickly, depending on where you were in the UK. These days it’s worse, and is a postcode lottery. The knowledge around treating eating disorders was, and still is in many places, extremely lacking.
Some of the staff at CAMHS were okay, others didn’t have a clue and could be very insensitive. But they were quite responsive then, whereas these days they are pushed to the limit and don’t have the resources, let alone current evidence-based knowledge, to help distressed families quickly enough. It’s even worse in AMHS – Adult Mental Health Services.
I was told by CAMHS: “You know how to feed your daughter, just feed her!”
If only it were that easy. I didn’t know how to feed this version of my daughter! They turn into screaming monsters at mealtimes as if possessed. It’s more like a war zone. My normally kind, honest, gentle, loving, sweet, talented girl was a demon. But no one tells you that! You think you’re the only one going through this hell, and don’t have a clue about how to handle your child. In fact, this is a very typical manifestation of someone with an active eating disorder.
Over the years of my daughter’s treatment, I’ve noticed how parents – mothers especially – are often dismissed as being neurotic and over-controlling. Most of us are not! Anyone will tell you that I’m far from neurotic or controlling. Thankfully for my daughter, I’m actually quite strong and level-headed – she probably wouldn’t be alive today if not for my strength and determination, but more of that later.
We’re not neurotic, we’re scared! We don’t know what to do. We need help to feed our very sick children. Anorexia Nervosa has the highest mortality rate of any mental health illness – we can see our children dying before our eyes. Of course we’re terrified! And that terror probably appears to strangers, even mental health professionals who should know better, as us being neurotic.
It was far worse after she turned 18. The clinicians in AMHS (with one exception) treated me with disdain, seeing me as being over-protective. At one stage, when my daughter was about 23, we were offered a few sessions of Systemic Family Therapy. After the first session, I realised what they were doing – trying to find out how co-dependent our relationship was, and trying to stop me from ‘interfering’ in her life. For crying out loud! My daughter was severely ill! Taxpayers’ money was wasted on those sessions! If it wasn’t for me watching over my daughter, albeit from a distance (she still lived in Eastbourne and I’d moved to Oxfordshire when she was 18 to get work), she would have died years before.
It was AMHS who said she could live on her own when she turned 18. They encouraged her independence, and her eating disorder thought that was fantastic – no more mum hassling her to eat! If it wasn’t for them, maybe she’d be recovered now. But no. They insisted that as she didn’t want to move to Oxfordshire with me, she would be eligible for certain state benefits and could live on her own with their support. Really?! She almost died two years later because of that ridiculous decision. This is where laws need to change!
I had to move because I needed to get a job, and I couldn’t find anything in the Eastbourne area. But I noticed there were plenty around the Thames Valley area. I could no longer afford to pay the rent or bills at home because I’d had to give up my job when my ill daughter was 16; I’d run out of annual leave, and I needed to take her to many appointments, and I had to feed her three meals and three snacks a day. And sit with her afterwards for an hour to distract her and prevent her from going to the bathroom.
Attending school was not possible by then, but she was given schoolwork to do at home. She was schooled when she was an in-patient in London, too, which meant that she managed to achieve some of her GCSEs despite being very ill. My daughter was always very conscientious about her schooling, wanting to do well and working hard to achieve good grades.
When she was first ill, my boss at the time was fantastic – he allowed me to take my daughter to work so that she could have meals and snacks when needed. But soon it all impacted my job – the strain on me, the time away, and not being focused enough on work because she demanded all my attention. I left and applied for every Benefit possible to care for her full-time. Most of which stopped when she was 18 – both the benefits and being ‘allowed’ to care for her. Great. I had to find a job. Now what will happen to her?
Anorexia takes away your life, basically. You’re living in a war zone half the time. My poor son felt left out; almost all my attention was on her. When she was in hospital, it was easier – I could spend time with him to make up for the times I had to focus on her. But the whole thing took its toll on him, and he ended up moving in with his father.
My children’s relationship was badly damaged by the illness. My son felt it was her fault, finding it difficult to understand at that young age that she was ill, and that eating disorders are not a choice. After he moved in with his dad, just before I had to move to Oxfordshire, both their relationship and ours suffered. I desperately wanted them both to come with me, but couldn’t persuade them. It’s only in the past couple of years that he has finally ‘forgiven’ her for being ill, and he is now a very kind, thoughtful and supportive brother to his sister, who is still ill with her eating disorder after being failed so badly by mental health services over the years.
There have been many failures, including an incident in St George’s, London, that ended up with two nurses being sacked because they dragged my daughter and another girl from the dining room, along the corridor into another room, and called in two security guards to help them force a tube into the girls when it wasn’t necessary for either of them at that stage. Here are two more awful incidents:
Failure One of many
A year and a half after my daughter – or rather, her eating disorder – decided to live alone thanks to adult services saying she’d be fine, her nan died, my ex’s mother. They were very close and it hit her hard, which triggered a decline in her eating. She had been managing, just, to eat what she felt she needed, but within that time had turned vegan. Another form of restriction! After her nan died, she struggled to eat properly and started walking far more (excessive walking and exercising is another eating disorder behaviour), losing weight, eventually needing in-patient treatment in an eating disorder unit in London for a couple of months, supposedly to kick-start her into eating more. That was in November 2011.
Her consultant then was the highly-regarded Professor Janet Treasure, well-known globally in the eating disorder world. I was thrilled! But sadly, even she couldn’t help my daughter to fully recover, because once again, the laws failed us – my daughter was able to discharge herself after only a few weeks. By then, she had agreed to move in with my partner and me; I thought I could help her recover, even though I had a full-time job. I handled that all wrong, but thought I was doing the right thing at the time! If only I knew then what I know now…
We gave notice on her flat, and she moved in with us just before Christmas. Not surprisingly, once here she kept saying that she’s an adult, I couldn’t help her, she could do it herself, and so on. Being out at work all day didn’t help, and I hadn’t yet discovered F.E.A.S.T. and other wonderful online support groups that have helped many families over the years to help their loved ones recover.
Our GP kept me in the loop as far as the laws allowed her to. By September 2012, my daughter’s weight had dropped dangerously low again. Our GP told me that she had referred her for assessment for in-patient care in Oxford, and I had to get her there.
The day came, and my very reluctant, miserable, moody, and extremely underweight daughter got in the car. On the way, she told me I couldn’t go in with her, and that there was no point anyway as she was moving back to Eastbourne, that her dad had found her a flat without my knowledge. I was furious! And so upset! And terrified. To cut a long story short, she basically ran away. Moved to Eastbourne. Mental health services in Oxfordshire couldn’t do anything to stop her. I couldn’t do anything to stop her. And six weeks later she almost died.
This is where the major failure comes in. I had been calling AMHS in Eastbourne for weeks to find out what they were doing to help her, and all they said was that she wasn’t answering her calls. I told them to go to her flat. They said she wouldn’t answer her door. Eventually, after another visit when I’d seen how frail she was, hardly able to walk, I rang them first thing the next morning from work saying they HAD to get someone there. Many phone calls later, and after I’d had an incredibly rude woman from the so-called specialist ED services shouting at me that they’d done all they could, I made her hear me. She listened to me only when I said that my daughter was on the point of collapse and death, and I’d hold them accountable. Most of the large office I was working in at the time heard me say that too!
The next morning, I drove hell for leather down to Eastbourne to meet the two doctors and the social worker who would Section her, which turned out not to be necessary. I walked into her flat – the door was unlocked! – to find her slumped on her sofa. She was quickly assessed and rushed to A&E, where she was moved to ITC. They saved her life, just. I was told, as they were trying to get glucose into her, and as she was trying to fight them weakly off even then, that if they couldn’t get it into her she would slip into a coma and they wouldn’t be able to get her out of it.
That was the worst time of my life. I spent three weeks by her side in intensive care, after which she was eventually medically stable enough to be transferred to The Priory Hayes Groves, which did a far better job of getting my daughter to a safer weight than any other ED unit had. And even that was still nowhere near good enough to engender a solid recovery.
Oh – and for the record, I lost that job too because of my time away, as I needed more time off to get over the stress and exhaustion once my daughter was safely in The Priory. That’s why I’m now self-employed so that I can spend time with my daughter when she needs me. Which she does, often. I am so grateful to my partner for his solid support throughout this hellish journey, as I couldn’t do this without him.
Failure Two of many
Another major failing by AMHS happened two years later when she’d been back in Eastbourne for about 18 months after discharge from in-patient care.
In early 2015, I noticed that my daughter was putting on weight. By this time, I’d found an excellent private therapist who specialises in eating disorders. I have to pay privately because there are no NHS therapists in Eastbourne who are up-to-date with evidence-based treatment. None! And from what I’ve learned through the incredibly knowledgeable online eating disorder support groups I’m in, very few in the whole of the UK.
Thankfully, my daughter’s Community Mental Health Nurse in AMHS was happy to communicate with our private therapist to support my daughter together, as the nurse admitted to not having enough eating disorder knowledge. The nurse was the one person in AMHS who I respected, and who included me as much as she could.
Things seemed to be improving, at last. Except that whenever I was with my daughter, her diet was still very restrictive. How was she putting on this weight? Secretly, it turns out, and by chewing and spitting – another dangerous eating disorder behaviour.
Until I found out what she was doing, things seemed good. Her personality started to return, her sharp wit and sense of fun. The fats in the food she was eating were healing her brain! At last! But the secret eating was a worry. She would not admit that she was eating more, albeit chewing and spitting, and the team (nurse and therapist) and I had to tread very carefully about confronting her. Shame is a huge thing for people with eating disorders, and we didn’t want to trigger her into a slide again.
The Eastbourne AMHS psychiatrist was my daughter’s community consultant … not that he saw her much. Once a year for a review if she was ‘lucky’. The Community Mental Health Nurse reported to him, but frankly, I had more faith in her than I ever did in him. In April 2015, we had a review meeting. I attended with my daughter’s permission. So, what does Dr Dickhead, as we nick-named him, do? He congratulated my daughter on putting on ‘so much’ weight, saying that now they can discharge her! She looked like a rabbit in headlights. I was seething! He should know better than to phrase things in that way!
I said, ‘But hang on, she’s hardly eating anything in front of me; she’s still eating a very restrictive diet! Something’s not right here…’
Dr Dickhead snapped at me rudely, ‘Well, she’s clearly doing something right, look at her!’
At which point my daughter ran out of the room in tears. This is NOT how you speak to someone with an eating disorder who is not recovered, whose state of mind is still very disordered, and who hates herself for feeling so ‘fat’, even though she wasn’t. She looked good, looked a ‘normal’ weight, but her mind was far from it. This quick exchange triggered her into a full relapse, lasting well over a year.
To compound the issue, at that time a rash was developing on her face and neck, and her blood results showed elevated levels of B Vitamins. Being a relatively uncommon side-effect of Anorexia Nervosa to have higher than normal levels of Vitamin B12, I had researched and found an article about this to show to Dr Dickhead. He was not interested, tossing the printed article aside and dismissing her rash as nothing.
Her GP eventually referred her to an NHS dermatologist, who couldn’t figure out what was going on and, in turn, referred her on to a private dermatologist. This woman did her research and discovered that my daughter had Pellagra, being a lack of niacin, and a rare secondary symptom of Anorexia Nervosa that’s more common in poor countries where proteins are hard to come by.
So, Dr Dickhead, what do you make of that? Obviously, my daughter never wants to see the man again. And neither do I. He should be struck off. Google him and you’ll see more stories. I put in an official complaint, but it was never properly resolved.
The Problem with Eating Disorder treatment…
… is that the NHS and the NICE guidelines are far too fixated on BMI. Yes, weight is important, and food is medicine – all foods! Fats, sugar, carbs – the lot. Do not talk to me about cutting out entire food groups or you may see my head explode. The UK may have an obesity epidemic, but my God, we have a rapidly rising epidemic of restrictive eating disorders too. In some people, obesity could well be a form of an eating disorder. The message needs to be ‘Everything in Moderation’! But I digress.
The minimum ‘healthy’ weight is set far too low. Research shows that recovery can only be achieved with a BMI of 22 or over. My daughter was discharged from her last in-patient stay at a BMI of 17, even though her consultant there wanted her to get up to 20 at least, but funding would not allow that.
Most treatment providers are far too focused on weight rather than state. State of mind is the ultimate measure of whether someone is recovered or not. The UK’s treatment needs to get up to date with current evidence-based treatment models, as practised in UCSD, OCP, and many other good treatment centres in the US. With the right treatment, full recovery is possible.
Instead, the UK’s treatment gets people up to a certain functioning point and then leaves them there in purgatory. Just where my daughter still is, all these years later. Except she’s hardly even functioning, not even well enough to work.
The UK is in desperate need of far more specialist eating disorder hospitals spread around the country, and more specialist clinicians trained to current evidence-based standards of treatment. The Government must urgently get behind this and inject a huge sum of money into mental health services in general, and eating disorder treatment specifically.
I’ve seen a huge increase in British parents joining support groups in desperation because of the lack of adequate care or facilities. Our loved ones are being failed, and I blame the Government. The NHS is a wonderful institution, but its mental health services are at breaking point.
Hunger Lies Deep 