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Monday 19 August 2013

Guest Blog from Jen

Is care in the community failing those with eating disorders?

Do you have someone in your family who has mental health issues? Oh, I'm sorry, don't you like that label, 'mental health'? Why not? It's nothing to be ashamed of. It's an illness - a biological, neurological illness. It cannot be helped and it's not a choice. 

None of us particularly like labels, but: 

· if you're in a wheelchair, you're immediately labeled as 'disabled' 

· if you're out of work and on benefits, you're labeled 'unemployed' 

· if your ethnic origin is African, you're labeled 'black' 

· or if you're mixed race then you're labeled 'Mixed Ethnic Background' 

· once you hit 65 you're labeled a 'pensioner' 

· if you have clinical depression, your label will be that you have a 'mental health condition' 

· and if you have anorexia nervosa, you're also labelled as having a 'mental health illness' - but this is the deadliest of all mental health issues 

Just because you have a label, doesn't mean you can't look after yourself, does it? Can you still make your own decisions? Well yes, of course you can. If you're disabled, a pensioner, black or white, most of us are quite capable of making reasoned, intelligent decisions. 

But not necessarily if you have a mental health issue, and even less so if it's an eating disorder. They are probably one of the most difficult conditions to manage, because they're also the most devious. 

They can't help it, but people with EDs lie, cheat and manipulate. They truly can't help it though - it's all part of the wiring in the brain that's 'gone wrong' and is controlling them. It usually manifests itself as a controlling voice that shouts at them that they're fat, lazy and worthless. It shouts that they don't deserve that good food, or that pretty dress. The voice tells them that they don't deserve good friends - who'd want to be friends with a loser like you? But of course the voice is lying. It's all part of the illness, brought on by extreme low body weight. And the desire to lose weight in the first place would most likely (but not necessarily) have been triggered by some event or situation within the sufferer's life that they couldn't deal with. 

The voice is scary, controlling. The lower the body weight goes, the louder it shouts and screams. The only way to keep it quiet is to let it have its own way, which means starving yourself (which can be lethal), and doing everything it says - including lying to your loved ones, carers and medical teams. 

The only way to get rid of that voice, get into recovery, is by putting on weight. Period. That's it, nothing more (well, therapy helps for some, but not until body weight is restored. The mind/brain can't take it until the brain has been nourished back to working properly again). But putting weight on someone who's that ill is like trying to put out a roaring inferno with a garden sprinkler to the untrained. It's almost impossible to feed him or her as they've turned into a stranger who cries, shouts, swears and can even get violent. It is the most scary time in the world, dealing with a loved child who refuses to eat. 

Parents need the help of professionals. And professionals need to keep up with new developments. 

So when a young person who may have had an eating disorder since around the age of 13 or 14 suddenly hits 18 (or even 16 in some areas), apparently the law reckons they can look after themselves and make their own decisions. Absolute rubbish! Of COURSE they can't! The individuals who have these diabolically disturbing illnesses can't even be honest to themselves, let alone their loved ones or carers. 

What these community care teams need to learn - damn fast - is that adults with eating disorders still need their family to help them on the road to recovery. Because only the parents totally understand their children. And that remains true even when the sufferer has chosen to live away from home. The parents should still be included, however far away they live. 

What community mental health teams and specialist eating disorder teams need to remember (or more accurately, learn! Certainly the East Sussex area that my daughter comes under don't seem to know this), is that when someone has an eating disorder, their emotional and intellectual capacity to mature in the 'normal' sense as one ages is stunted by this neurological illness. Whether the patient may have not wanted to 'grow up' or not, the sheer fact is that when you develop an eating disorder, you also experience arrested development. 

Many (not all) people with eating disorders, by the time they reach young adulthood, only have the maturity of a teenager. Even more reason to make sure that the parents are involved in their care! Because the best help comes from the family, supported by professionals who understand the illness. 

Our story... 

My daughter is 21. She has Anorexia Nervosa and Depression. The AN was diagnosed in April 2007 but had been around for a couple of years before then, we know now. The depression came first, but I never noticed that. Shame on me. 

She almost died last November because she was able to manipulate her care team and me. She was helped to almost kill herself by the ridiculous laws we have with regard to adult care here in the UK. Even though she had moved back in with me and my partner the previous Christmas after a period in hospital. 

Going back to when she turned 18, I was only allowed limited say in her care, like every other parent in the land. We were living in Eastbourne at the time and were under the care of the Eastbourne Mental Health Team, transferred from the CAMHS team. She'd been in and out of hospital since she was 15 but by the time she was 18 she had got the illness under a certain amount of control, albeit at a low weight/BMI. It was still controlling her big time, but within its demonic grasp she was somehow managing to fight it enough to claw herself an existence, a semblance of a life. Therefore the Eastbourne team deemed she was 'safe' to live on her own with their support, as I had to move in with my partner in Oxfordshire. I was virtually homeless then with no job after years of caring for my daughter and, because she had turned 18, all the benefits I received for her stopped – it was a complicated situation. I applied for jobs in and around the area, but other than a couple of interviews where apparently I was always 'just pipped at the post', no offers until I moved to Oxfordshire where there were more jobs for my skill set – I got a job within two months of moving. My daughter could have come too, but sadly for me she chose not to. 

So other than talking on the phone every day and visiting as often as I could, my daughter's care was in the hands of the Eastbourne mental health team, under the guidance of the specialist eating disorder team SEDCAS (Severe Eating Disorders Consultation and Assessment Service) who my daughter was referred to. I felt tentatively optimistic, but that optimism quickly waned when they never fully involved me in her care. However much I tried, I got little or no response from SEDCAS. Worse still, a year after she'd been living on her own, I'd been invited to attend a meeting where they then told me to stop talking to my daughter about food... 

What?! But she NEEDS food! Food is her medicine, and for reasons that are completely beyond me they just don't seem to 'get' that. 

Of course, as a parent, you want your child to be happy and healthy. So there's no way that on our precious weekend visits I would go on about food all the time as it's important to try to have fun, do nice things. But it is necessary to discuss meals, timings, what we're eating, etc etc. It's ludicrous to think you can't. Of course, I knew that my daughter only told them the 'bad' stuff because that's what the voice was making her do. It was making me out to be the baddy. She would never intentionally do that though. I know that ... and so should they, the supposed specialists! 

That was a couple of years ago, and she moved back in with me, as mentioned above, after a couple of months in hospital when she'd gone badly downhill. But she hated living with us, out in the sticks, and missed living in Eastbourne. Unknown to me she had asked her father to help her move back – just when her health was deteriorating badly again and our GP and I were worried. But because of the patient confidentiality laws and the deviousness of the illness, she managed to move and not tell the teams. I had to do that, and then I had to ensure the Eastbourne team were seeing her. They weren't, and she nearly died. It was only through persistence that I finally got the Mental Health Team to meet me at her flat a few weeks later where we found her slumped, about to slip into a coma. 

The wonderful doctors and nurses at Eastbourne District General Hospital intensive care saved her life. After a few weeks there where I wouldn't leave her side, she was finally transferred to a specialist ED hospital in London. Eventually she was discharged officially back in July, and is now back in her flat in Eastbourne managing relatively well, but again at a very low weight/BMI. She is back under the care of the same teams, including SEDCAS. 

So I was particularly horrified the other day when my daughter told me that the woman heading the SEDCAS team asked her in conversation: "How can we stop your mother from interfering?" 

My daughter was upset and angry. She didn't know what to say. Who does that, in this day and age? We're long passed the days of Hilde Bruch and her extremely outdated treatment plans. But it seems this woman, who I'll refer to as 'A', is still working in the dark ages. We talked about this at length, and I've spoken to other parents who have actually been blamed for their child's eating disorder by this woman, and another young woman who says she was helping her to remain at an unhealthily low weight. 

Speaking to her CPN (Community Psychiatric Nurse), she suggested we added this subject to the meeting that was due to take place on Friday, the day before our holiday. I agreed, albeit reluctantly as I was concerned about any ramifications my daughter may experience. The CPN said she'd get back to me as a time still hadn't been confirmed, despite this meeting being requested, by the team, a few weeks previously. I never heard from them. I rang around everyone on the Thursday, left messages everywhere, but no-one got back to me. Then that evening on the phone to my daughter, she told me she'd been handed a letter earlier that day, written by A, saying that she felt the meeting wasn't necessary. 

What?! Of COURSE it was necessary! We were going on holiday the next day – there were a few things that needed saying. Instead, the letter was basically telling my daughter to tell me not to talk about food, exercise or have any ED talk during the holiday! I know, I've seen it. I have a copy of it. I'm incensed that this woman cannot be bothered to turn up to an important meeting and discuss, face to face, my daughter's care. Her approach currently smacks of trying to create a rift between us. 

I have to start really shouting loud now. I need this so-called 'specialist' team to get up to date with their care regime. Strong letters will be written, I can assure you. But my daughter and I are currently on holiday in Norfolk, and we intend on having a lovely relaxed time – as relaxed as it can be with the demon third unwelcome visitor of Anorexia Nervosa looming over us. We're trying to fight him too. 

She told me this morning that she thinks I have more ED and AN knowledge than the specialist team … but I'm no nurse or therapist! I'm only a mum. That, to me, is very, very scary. 

We need to act now! 

· Firstly, contact your MP about getting the laws changed to protect your loved ones with eating disorders, especially if they're over 16. There is a group of people on the Facebook forum for FEAST – Family's Empowered and Supporting Treatment – who are actively doing this now, but everyone can help 

· Please, if you are at all concerned about your community care team's approach, speak up! Ask them what recent research they've read. If necessary, write to PALS and your local MP. That's what I'm doing next week.


  1. Well written Jen! Sharing and will tweet! Hoping all will feel compelled to write to their MP's and share their disgust with this woman's approach! Staggeringly and unashamedly reckless, given what we know about ED! It isn't bloody rocket science: FOOD IS MEDICINE!

    1. Thanks Gaby! I'm inspired by you, as I know you're meeting with our MP for Care & Support soon. Good luck! x

  2. Meanwhile another family from the same part of the country have been blamed for not being controlling enough when what they needed was not blame but practical on the ground help. All very disturbing and, quite apart from the damge and danger to vulnerable people's lives, a great waste of money to the NHS when supporting families can be so much more effective.

  3. I live in Australia unfortunately struggling with simillar issues with my daughter who is 19. I feel like Im banging my head against a brick wall. They tell me she needs to want help to get better. She is in no mental state to make any medical decisions. This

    1. I'm so sorry. All you can do is keep going on at them, don't give up! Keep ringing, writing, letting them know that you won't give up on your daughter and neither should they. Good luck.

  4. Jen, this is a terrible and under-discussed problem, with many ramifications. At Kartini Clinic we have had ocassion to ask parents to obtain guardianship over their young adult child in order to provide treatment many times. The courts have been supportive. ANd sometimes it works. What are the issues? You might be surprised:

    1. number one issue is refusal by parents who have guardianship to exert it. As one father put it "Doctor, I'm certainly not going to make her do anything she doesn't agree with" huh?
    2. number two problem, perhaps confined to the US, is that every state has its own rules and guardianship is invalid across state lines; so families who do not come from Oregon have thier guardianhip obtained here for the purposes of treatment, invalidated when they return home
    3. number three problem is the inexplicable resistance of the psychiatric world to guardianship for AN (unlike for other mental illnesses), as yuo ahve described. Doubtless this is still fueled by ignorantly cleaving to the concept that controlling parents are the problem and need to be less involved, not more. A sigh of despair from this end.
    4. number four problem (never far from us in the USA) is cost. It costs thousands of dollars to get guardianhip (attorneys, etc), more if the young person contests it.
    5. number five problem: even enlightened family courts like ours are not immune to weight prejudice, by that I mean that, no matter how sad and pointless the previous failed treatments, the impact on life and the certainty of relapse if lack of treatment continues, if the patient is not underweight at the time guardianship is proposed the court is likely to argue that they "don't have a problem anymore" or "are not severe enough" So you have to wait ntil they are dangerously ill again.

    1. Hmm, I think a 'Guardianship' clause could be useful here in the UK, probably what we would know as a 'Power of Attorney' I think, but not sure. That could help here and would be worth looking into. But I totally hear what you're saying about the issues surrounding it. Especially your point number 3 - I'm sure my daughter's 'specialist services' probably think I'm a 'controlling parent'!! I echo your sigh of despair. Over everything you've said.

  5. "I am only a mum"

    You are a mum, no "only" about it. It is the most important thing. Even with broken systems and loopholes -- and EVERYONE has those -- having parents who get it and know what they're dealing with is a greater power than all the authorities.

    We are all fighting for those authorities to see that "a mum" or "a dad" are the first, last and most important allies. Let's not stop fighting. We're making progress and need a GREAT DEAL MORE. The parents who have been fighting do so in hope of others joining until no parent has to deal with doubt, deflection, division, or alienation.

    The disease is hard enough. Fighting the system, too, should be unnecessary!

    1. Thank you Laura! Indeed - it's hard enough fighting the ED. We shouldn't have to fight the system too.


    This is a link to safeguarding vulnerable adults in Eastbourne. Your daughter is a vulnerable adult and is being abused by the people who should be caring for her. Contact the safeguarding team and at least get them to consider an investigation. If this person is denying your daughter a meeting and the opportunity to discuss her case, that is a form of abuse, and needs to be reported to the DBS (Disclosure and Barring Service - formerly CRB)

    1. Thanks for the link - will look into it.

  7. When my daughter turned 18 (and she was doing very well in recovery at this point and maintaining her weight while away at college), we insisted she sign a medical power of attorney giving us the right to make healthcare decisions on her behalf. She didn't want to do it, but I explained to her: A) Your disease is such that if we wait until you're sick to address it, your illness will prevent you from knowing you're ill and B) If you want to drive a car or use a cellphone owned by your parents, you don't have a choice.

    She relapsed a couple of months later and I never even had to bring up the POA--she went to treatment right away because she knew she had no alternative.

    I advise all parents to do this--no, it's not pleasant or fun, but it is necessary.

    1. Ah, yes, I think the Power of Attorney is a good idea and will look into that. However, that's not necessarily going to help the individual when the medical support teams who carry out the treatment still need further training. Even with a POA, it won't help much if the treatment team are not working in light of more recent research.

      I'm pleased your daughter went into treatment of her own volition though - good for her.

  8. Thank you so much for the wonderful share. I am glad that I came across this post.

  9. I am currently struggling badly with an eating disorder and I am under Eastbourne and receiving no help whatsoever from them. I actually want help altho the anorexic goblin in my head doesnt want the help and like you have described so accurately described the illness does make us lie and cheat and manipulate people. Sedcas are only interesting in weight gain, not interested in helping people gain better body image or self esteem or learning to like themselves or re educating people with eating disorders what normal eating is or what a normal portion of food is, or how to eat without being sick or other unwanted behaviours. I have lived with an eating disorder for many years and it is in only recent years that I have actually become afraid of what I am actually physically doing to my body, perhaps afraid of the physical toll that it is now taking. And yet I cannot get the help I need because all Eastbourne are interested in is weight gain, or getting me weighed or getting a blood test out of me :(

    1. Anonymous, I just wanted to acknowledge your comment and your dilemma. You've done something brave and wonderful by saying this, and believe me when I say MANY MANY MANY of us out here get it and hear you. I want you to know as a fellow human on the planet that your health and your life matters and I want to reach out to you to ask if there is anyone in your life who might intervene on your behalf? Someone who is not currently suffering from an ED but knows what EDs are? Sometimes an advocate can make all the difference!!

  10. I dont have contact with my family but I do have someone who acts as my nominated next of kin and I have asked many times for her to be made legal next of kin because I have unfortunately been sectioned in the past. Under the mental health act because she has not been made legal next of kin she is not recognised and therefore cannot appeal the section and has not even been contacted on occasion. She believes the local mental health unit is dreadful and is not the place for people with ED's to be treated and offers no therapeutic intervention. She does have contact with my keyworker and GP who both will talk with her but my keyworker and the mental health social workers have failed to get the appropriate paperwork when requested to make my next of kin legal which angers me - apparently according to what I understand when under section I should have been nominated someone to represent me and yet at no time has this ever happened. I do currently see a dietician as I was in ITU this year following a severe case of pneumonia and when I came off the ventilator my eating was made more difficult due to lack of appetite and taste changes combined with the anorexia. She wants me to receive support for the ED and has asked this of my GP but as of yet nothing. I do have a good relationship with my GP but I think my GP struggles to understand the difficulties that people have with an ED. It is not as simple as eat three meals a day etc which is what you get told you need to do. But if you have not eaten a meal without being sick for years then how do you do that? I would like help around body image, self esteem but you dont get that. The last time I was in hospital for the Ed, the same old system of punishment and reward applied with the sole aim of weight gain being the main objective and in the whole time I was there I received no therapy as did none of the other women who were there. I look in the mirror and see this monster, what I would like is to look in the mirror and see what other people see....but I dont know how this is possible.

    1. Anonymous, I completely understand. Your experience is both WRONG and UNFAIR. Unfortunately although there is better science and practice starting to bubble up it is still not widely available and most healthcare workers are unaware of what they don't know -- even many who specialize in ED. Even those who do know struggle under the limitations of what the health system will allow and society permits. While the treatment for those thoughts is, indeed, three meals, that is like saying that the solution to cancer is to take chemotherapy but not actually giving the person the medicine! Still, some patients are able to work around ED's voice and get out of that maze. If only to get out to then help others get out too! It is grueling and heroic work, done in a storm of anxiety and half-blind, but this is true: RECOVERY IS OUT THERE and it wants you to find it!!! Please let me know if I or anyone can be of assistance. You may want to give your GP some of the modern information, for example the Medical Guidelines booklet from the Academy for Eating Disorders: