Guest post: '£150m to tackle eating disorders? Here's what would have helped my daughter'

[MumsnetGuestPosts]

What makes a 'good mother'? It’s an impossible question to answer, but if we asked people to name ten things that make up a definition, I'd bet next month's salary that food would feature. It starts before birth – are we eating the right food to nourish our unborn child? Should we breastfeed or not? When to wean? Is dairy okay? What about nuts? How much sugar is too much? It's not just what we eat that is subject to scrutiny, but how we eat. Around a table with TV switched off? Good mother points. Slumped on a sofa, chewing pizzas in front of Eastenders? Bad mother points. Our children are measured from birth and their weights are plotted on charts. In the high centiles as a baby? Excellent work, you have a bouncing, bonny bundle of joy. Still in those high centiles on starting school? You know childhood obesity is a serious problem, right?

What nobody tells you is that one day, your child may decide to starve themselves to death, purposefully and deliberately. That all your worries about whether they ate potato shapes or drank too much juice will pale into insignificance, as you watch them getting smaller and paler, gripped by an illness so terrifying no description will ever convince you it's real unless you see it for yourself. Imagine your child possessed by a demon, screaming and hurling the food they once loved and devoured, sobbing at how huge and disgusting they are when you can count each bone from a distance. Years after toilet training stopped, you have to supervise them in the bathroom again, to make sure their fingers aren't jammed down their throat to vomit the food back up. Anorexia was the diagnosis given to my daughter L in 2012. She was the sensible one, the high achiever, always baking for friends, helping around the house and sorting out other people's problems. And she spent a total of 14 months in hospital or day care programmes, lost a year of schooling, come close to being sectioned and fed through a tube, and turned into a human being we scarcely recognised. Someone once told me all you needed to do was love your child and they would be fine. They were wrong.

The government's announcement of £150 million to be spent on improving eating disorder services for young people is welcome, but it’s shockingly overdue. The mortality rate from anorexia is estimated at a wide range of levels, in some studies up to 17%. Put crudely, L had a better chance of surviving Acute Lymphoblastic Leukaemia. The stated rationale for this investment is to prevent long, expensive hospital stays and speed up access to treatment. I'm trying not to be cynical, so if I had a magic wand and the £150 million, this is what I'd do:

1. Educate every person working with young people, not just mental health professionals. It isn't acceptable to sit in a GP's office with a daughter who has a BMI of 17.6, has stopped menstruating, admits to purging and be told "just don't lose any more weight, but it's probably not a good idea to try and gain weight". Everyone needs a basic grasp of eating disorders, their symptoms and how to access help. This will also help tackle some of the myths: silly, vain girls who diet too much; families in crisis cause anorexia; you can catch it from too many magazines with stick thin models.

2. Think in a joined up way about what health promotion campaigns are supposed to deliver. Irony gets no grimmer than sitting in a CAMHS waiting room, staring at a Change4Life poster trilling "Could a little less on your plate help you get more out of life?" next to a severely underweight teenager. Many restrictive eating disorders are triggered by dieting, which in turn is triggered by constant scrutiny of shape and size. The experience of being underweight can in itself cause the obsessive behaviours and thoughts which typify eating disorders. A healthy weight has a minimum as well as a maximum.

3. Proper community support. The process of ‘re-feeding’ an anorexic takes three meals, plus snacks, each of which can take several hours. A lifeline for us was the offer of home visits to supervise meals. This was only for a few weeks, but it was the best support we ever had. Health Care Assistants visiting homes and helping parents in the techniques of coaching their children to eat could be transformative - not only to the mental health of the child, but the parents, too. Many children are admitted to hospital because their parents are too exhausted to continue.

4. Set standards in referral times. If you think your child is starving to death, being told to wait a few months for an appointment is unacceptable.

So, there - I've tried to be sensible and positive, and think about practical ways forward so that others don't go through the same things as us. But on bleak days, I still want to make a bonfire of every set of bathroom scales that ever existed. I want to go back into the delivery room and demand that my daughters (L is a twin) are not weighed, ever. Today L is in a better place. She still hasn't menstruated properly for three years, meaning her bones are likely to be less dense, like Crunchie bars with much bigger holes. But she can eat without a physical fight being put up. I feel relieved that the government may finally be taking this awful disease seriously, but for me, the jury is still out.

[JennyOnTheBlocks]

i'm so sorry to read your DD went through that, and now crying for my own situation

this is particularly poignant to me right now, just back from an appt with community dietitian with DD - i'm at my wits end with trying to get her to eat (she has ASD)

i've just been told to try harder

to offer her more food, to expose her to different food

i'm a fucking chef for fuck's sake, but it's MY fault my child won't eat

[JaneAHersey]

There has been a 40% increase in youngsters self harming because of poverty since Cameron came to power. Reports that many children are so hungry they are having to turn to prostitution.

This Government has cut CAMHS funding by 2/3rds and mental health services for children and adolescents is at crisis point.

Children living poverty is now the highest ever recorded. This government are not going to fund any mental health services.

[fredfredsausagehead1]

Eating disorders ARE self harm!

I'm sorry as a sufferer I can tell you it is a terrible illness where a. Lovely, sensitive, empathetic person can shut there mind off completely to the pain they're causing those watching them suffer.

X

[EvaMusby]

JennyOnTheBlocks, I'm so sorry you're in this situation right now. Dietitians don't always specialise enough on these issues, so some end up making things worse. And parent-blaming is pretty common among professionals who are not up to date with the specialtiy.
There is an overlap between eating disorders and ASD (just an overlap - plenty of people with an eating disorder don't have ASD and plenty of people with ASD don't have an eating disorder) so if your daughter has ASD and depending on quite how much anxiety/self-talk she has around eating, exercising or body shape, keep that in mind. The earlier you know what to do, the less the illness gets a grip, and I'd hate that dietician to have missed something that would help you. Even without an eating disorder, you may find some good tips in the eating disorder word: see Around The Dinner Table, a parents' forum. I've produced some help too. Wishing you lots of successes very soon.

[Jenfer19]

Thanks for posting this excellent article! I also have a daughter with Anorexia Nervosa (AN). She was first diagnosed in 2007. We were under CAMHS in E Sussex at the time and had pretty appalling treatment. As you say, refeeding is THE most important thing when your daughter or son has AN - Food Is Medicine is our mantra now. But in the beginning, when you've just had the diagnoses and you're freaked out at the fast weight loss and refusal to eat, you need professional help, fast! Especially if you're a single mum, as I was. The Health Care Assistant that (eventually) came out to us was awful, saying things like, "Don't be so ungrateful, your mother cooked that for you!" and generally used bullying tactics to 'help' my daughter eat. It didn't work and instinctively I knew that was the wrong approach, so threw her out. There are far better ways to get your child to eat. It's damn hard, but it can be done.

These government funds need to be carefully used. For instance, we URGENTLY need specialist, up to date training for the community teams so that people don't go through what my daughter and I did. Another equally urgent need is for specialist eating disorder hospitals to have more beds with more qualified, trained staff. Currently people are dying because beds are not available, either for people with eating disorders or with other mental health problems. This is NOT ACCEPTABLE in this day and age.

I agree, One More Mum. I just want to break every single set of scales I see! Thanks again for a great post.

[CanIBeHappyNow]

Great article/post.
My dd was diagnosed with anorexia in 2009. GP was brilliant and referred to CAHMS straight away. CAHMS... hm, mixed experience. I agree about the waiting rooms. I think I saw the same 'Change of Life' poster. Not to mention the diet cookbooks on the bookshelf. Just sitting in the brightly coloured waiting room when you felt like crap with only kids toys and colouring activities week after week. Didn't help that trainee weighing her would comment 'you're so pale!' 'you look like you have lost a lot of weight today.' Wow. Thanks. Oddly that week she had gained...
The decision that after telling us yes, dd had lost weight that week (this was before she was off school for a yr) but everything was fine ATM, we had decided on the maudsley method and she was good to go home with us. Cue a call in the middle of having lunch (essentially me feeding a 12 yo with forkfuls of food...) that no everything wasn't fine. She had to be taken into hospital immediately and they would then decide whether to transfer her to the inpatient service. She was weighed in corridor in full view of the waiting room, no food available, ECG and blood taken... we got home at 1am having been there since 2 in the afternoon.
These were some of the most dire days of my life and would not wish them on anyone. So much more needs to be done, Onemoremum, so much more.
When it was decided that she no longer needed regular weigh ins at op centre, but we would still stay with the service as dd had in a very bad place - anxiety and depression. Now on meds and receives regular counselling but at the time, when she explained feeling low her appt kept being moved back and was delayed for 2 months. During this time she attempted suicide.

There have been good and bad aspects to treatment and I think as a a parent, if you feel that the help your child is receiving is inadequate, you often do not want to raise concerns because you don't really know if you're overreacting and reassure yourself that the professionals know what they're doing. Maybe that was just me!

Sorry for prattling on and for poor expression (trying to write this quickly and typing on ipad) Awful to hear others experiences, it is a truly horrible disease. Money cannot just be chucked at it hoping that there will be some drastic improvement, of course this is necessary to ensure improvements but it needs to be targeted.

[Jobob66]

CanIBeHappyNow - imagine my horror when the nurse taking blood from my daughter's bony arm said "You'd make a lovely model".

[boredaccountant]

A friend of mine has a child with an eating disorder and possible ASD. The clinic she's in seem to have no sense that the treatment she needs involves some consideration of ASD. If anyone has any experience of this and knows of anyone who understands how these conditions overlap then please let me know! Thanks!

[CanIBeHappyNow]

This was around a year after original diagnosis, hence 12yo and 13yo!

[scousadelic]

I think there needs to be more awareness of eating disorders and earlier and more intervention. Several girls we know of at DDs school, over 5-6 years were hospitalised with anorexia but there was a much larger significant number with eating/not eating/bingeing/purging and image issues. The message given to these girls and their parents was that the school can do nothing and the NHS will not be involved until they are really, physically ill.

My DD is now mid-20s and has ongoing stomach and dental problems as a result of the constant vomiting, she suffers ongoing anxiety and still genuinely thinks she is fat (she is size 10). My friend's daughter also has physical problems as well as depression, anxiety, image issues and OCD; all of which developed alongside the binge-purge disorder which was, apparently, not serious enough to warrant any NHS treatment

Poor treatment of these disorders is nothing short of a tragedy as these bright talented young people do not get the support they need to become healthy and happy adults

[EvaMusby]

Boredaccountant, a few pointers in answer to your question. If your friend's child's eating disorder is anorexia (AN) or similar (restricting-food) then I don't know of any studies specifically on how best to treat kids who have both AN and ASD. There are certainly no big ones.

The biggest studies show the best treatment for anorexia concentrates on anorexia first as a priority, because it's the highest risk, and it's so overwhelming to the child, and the sooner you treat it the better the recovery.

Plus, anorexia brings on symptoms which can look like other psychiatric disorders, and as you treat the anorexia, those symptoms often disappear.

It makes sense that your friend should want the support of people who understand ASD. At the same time her priority should probably to make sure the anorexia is treated with proven methods, and those are (assuming child is medically stable) specialised teams supporting family-based treatment at home, with priority given to normalising weight and eating and exercising behaviours, and non-judgement from parent towards child, and non-judgement from professionals towards every family member.

Your friend will find lots of parents with experience of eating disorders and ASD on aroundthedinnertable.org parents' forum. Hope that helps.

[boredaccountant]

Thank you. I'll ask her about that website, she's always looking for support from others as she has little family and the father has refused to work with her. She has been in a clinic for over a year now full time. Except for a brief period where she began to eat she has mostly been force fed and is Sectioned. The concern is that while they are directing everything at the anorexia (or food avoidance disorder, the diagnosis seems to change daily), they are not dealing with underlying anxiety brought on by the ASD and they are focussing on her dealing with her deep emotions which she finds impossible to understand in the way non ASD children can. I have to say she has been incredibly lucky with the funding and it was only really through her mother battling for her that she's got it. It seems so sad that families and kids with eating disorders don't always get that support and are left struggling day to day to deal with it.

[CrispyFern]

This sounds dreadful for so many of you, like there's no thought behind treatment at all.
:(

[Mitchy1nge]

onemoremum that was a painful read, my daughter spent six months in an ED unit and about 2 years in adolescent units overall. She is currently about half way through the academic stage of her legal training, working part time in a law firm and thinking about The Bar/applying for mini pupillages. Much happier and healthier than I could ever have imagined.

I found it very difficult to get help with post-meal supervision, it was a 24/7 job really to make sure she wasn't exercising in the night etc but as a single parent with other children it was easily one of the worst episodes of our family life. For a while we had an outreach worker from the Phoenix Centre in Cambridge but it was of no practical help. My biggest source of support were the meetings with other parents. Other people, generally, had no idea what we were up against and that includes several CAMHS practitioners.

Thanks for your post.

[Thumbnutstwitchingonanopenfire]

So sorry to read of your DD's problems, Onemoremum - I hope she recovers from this pernicious condition.

Have you, or any of the others on this thread, heard of/seen this organisation? eating-disorders.org.uk/ It's the National Centre for Eating Disorders. Might be some use? eating-disorders.org.uk/information/all-about-anorexia/ this will mostly not be news to many of you, but there might be some useful insights in there.
A link to ASD is mentioned, but only in the context that there are similarities between the characteristics of some people with ASD and the "anorexic personality".

[Smartleatherbag]

God, that is so hard, onemoremum : (

I had anorexia as a teenager/early twenties. I was very, very lucky to get good treatment (intensive, 5 day a week interpersonal therapy, plus a dietician who actually knew what she was dealing with) but my god it took some getting!

I came across lots of very poorly trained hcps along the way. Happy to say that I recovered and went on to have two kids despite not menstruating for years and years. Seem to be in very good physical health now.

Best wishes to you and your family

[TOMAGCRO]

I read with interest that the Government has allocated £150 million to help children with eating disorders. It sounds like a lot of money but it is I fear a drop in the ocean.

My daughter, wider family and I have been battling with ED (eating disorder) for years. My daughter who I refer to in my blog (www.tomagcro.com) as Juniper has been in some very dark and desperate places since ED crept into our lives. Juniper is no loner a child she is aged 22 and still lives at home following her graduation from university.

We didn't see the ED signs when she was younger....healthy eating campaigns, exercise regimes when I look back now I could kick myself. I even bought her sporting equipment to help her with marathon training.

We all know our children grow into adults. ED prevents people from achieving their full potential. It certainly stifles the ability to be completely happy and care free. ED is no respecter of age limits. You don't grow out of being an anorexic or bulimic . Look at people shopping...you may spot an anorexic. You won't know who is bulimic. People with add talk about being a recovering anorexic or bulimic in the same way an alcoholic will admit being in recovery....it's just that the recovery lasts for the rest of their lives.

Those who suffer with ED liken it to having someone screaming in their ears all of their waking time.

I often have wished that if Juniper was to become addicted to something it was alcohol. I could hide that in the house. I could have made it difficult to access. She could choose not to drink alcohol and in fact she drinks very little alcohol even now (calories).

The problem with ED (Juniper is a recovering anorexic) is you have to face your greatest fear food three times a day. Three times a day as a parent you will see your child struggle to put food in their mouths the food that is required to keep them alive.

Many GPs don't have a clue. When Juniper was very,very bad we at last convinced her to seek medical help. I was fortunate to have private medical insurance and knew a specialist eating disorder clinic would assess and treat her. The GP we saw made the referral and in what was supposed to be a casual humorous remark Said "in a few years time you will be back here asking for diet pills". We left the surgery. Juniper burst into tears. I can tell you now she would never see that doctor again under any circumstances.

If society is to help children with eating disorders there needs to be access to clinics and counsellors. Without my private health cover we would have waited months for an initial appointment. We would have been unlikely to get a clinic appointment as Junipers weight was not so low as to be life threatening. Imagine that you have to be near death to get seen......could you imagine the outcry if the NHS started saying "you only have a little bit of a disease....come back when it's far worse and you are in serious danger"... That happens daily with ED sufferers.

The causes of anorexia are numerous. Education will be a key to spotting it and helping those deal with it and then resources have to be allocated to treating it.

Treatment is not stuffing sufferers with doughnuts and milkshakes. God I wish it were that easy.

If a family have a child with an ED then whole family suffer. Grandparents, friends, and siblings need crash courses in acceptable and non acceptable language to be used with an ED sufferer. You have to be aware of things which trigger an anorexic. It could be....meeting another anorexic. Any trip out of the house involving food has to be planned out well in advance this will mean menus have to be studied on line in great detail. I recall one occasion when we had to leave a Presso after they changed their menus showing the calories of all their dishes....it is now a no go area for my family.

I don't have any answers to solve ED. It is a tough complicated medical condition to deal with. I have some experience of a parent with an ED daughter and I have scars of trying to battle with ED. I have had lots of heart ache have shed countless tears. But I still most important of all have my daughter...who at the moment is in a good place I am pleased to say. But I know that could change tomorrow..

if the government think that £150 million will solve the problems of kids with eating disorders they are sadly mistaken.

Statistically there must be a number of MPs who have experience of ED in their lives. Be good to hear from them...but I bet not many if any will come forward and that is part of the problem. it is socially unacceptable to admit you have an addiction or mental illness problem be it anorexia, bulimia or depression.

I started my blog anonymously as I was ashamed and frustrated. It was my cry for help because as a parent I couldn't fix ED and stop it from destroying our lives. EDwill always be with us I am resigned to that. I have to try and help keep the screaming at allow volume.

Now Juniper blogs too. Neither she or I would reveal her identity as she would be defined by ED.

There are tens of thousands of people in the UK waging war with ED and in the vast majority of cases they battle alone without assistance. The chances are you know someone...but you might not know they are battling ED. Keep and eye out and when you find someone battling a kind word or a hug will go a very long way to helping them for a short while feel better.

[northernlurker]

It's an epidemic isn't it? An awful epidemic of illness attacking our children and instead of recognising and combating it, far too many people spend time encouraging the conditions in which the disease thrives.

I'm not a perfect mum by any means. My kids could say plenty about me I'm sure. But one thing they cannot say is that I ever. ever told them to be thin or thinner. Because I never have and I never will.

[Littleturkish]

I've just read out your blog to my husband and the two of us have sat here nodding along eight each and every point.

As someone who is recovering an ED, having suffered with it since I was a pre teen, much of what you wrote resonated with me.

I hope L continues to recover, I'm 30 and hopefully looking at the back of my ED now, I still receive excellent therapy (the NHS at its best) and am pregnant with my second child. My restrictive periods have definitely been reduced through the therapy I've received- but it was only getting pregnant (by some miracle- something I had thought was impossible) that triggered my referal to the ED therapy ACTUALLY getting referred.

More people need to be educated about eating disorders, particularly in schools. I hope this money is spent effectively.

[stealthsquiggle]

Painful reading. At the risk of outing myself if she is on MN, my best friend at uni was sectioned and hospitalised with an ED. I cycled up there every day not knowing if that was the day when she would have somehow succeeded in killing or seriously harming herself (they wouldn't have called me, as I was not family) so I have a small inkling of what it must be like for parents.

I just wanted to say to all those going through it right now that although the scars (mental and physical) will always be there for all of you and your DC, there can be light at the end of the tunnel. My friend ended up taking a year out before coming back to finish her degree (doing extremely well, even though she was still restricting her food and exercising to excess, as her work became the main focus of her naturally obsessive nature) and she is now a mother of 3 with a very successful career which she loves.

[OfficerKaren]

What can you say to a member of extended family ( or to her mum?) who looks painfully thin and unwell - 18 year old "perfect" teen.

[Thumbnutstwitchingonanopenfire]

TOMAGCRO - your post and your blog are really well written, the pain and anxiety that ED causes really shows through. Your DD must be very proud to have you for her father though - you seem to be doing everything just as well as you can to support her. I had a look at her blog too - she sounds amazing, so aware, so wanting to beat the ED. I hope that she succeeds completely.

Officer - I don't know. One of DH's cousins - her DD had AN a couple of years ago; we saw her in the July and I noticed that she had very thin arms and her collarbones were very noticeable (both sides) - she covered up with baggy tops of course but we went out for a meal and she, at 14, ordered a children's meal and then ate about 1/4 of it. Not my family, I don't know them that well, I did't know how to say anything, so chickened out.
6m later, she was diagnosed with AN - overexercising late at night on her mother's workout equipment, not eating etc. - her weight got down to 41kg (90lb or 6st 6) and she's at least 5'7" tall before they managed to catch and arrest it. I wouldn't say she's clear of it now, but they keep a very close hawklike eye on her to make sure that she doesn't start to drop off again.
When her mother was telling me, I mentioned that I thought something might have been a bit off back in the July, but her mum insisted (so I didn't push it) that it had only started just before Christmas.

[TOMAGCRO]

Officer Karen. I would ask the mother....she might not see it...neither my wife of I did in Juniper.....we were proud she rowed...ran...trained....


She might not have as lie want yo do. ED is really frightening and intimidating for all family members.

Maybe read Skills -based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method Paperback – it really helped me.

[TOMAGCRO]

Sorry should have read clue what to do...