"Harm reduction"

"Hi,I am recovering from anorexia and regularly read your blog. I live in the UK and as I was reading earlier I wondered what you would make of the treatment of eating disorders over here. In hospital, people over 18 who suffer from eating disorders are given a choice between full recovery to a BMI of 20-21 and what they call 'harm reduction'. This entails teaching the anorexic to maintain a BMI of around 15, high enough to keep them out of hospital but not so high that they can't cope with the weight gain.

Personally I am not a fan of this approach, I think that anything that makes the anorexia happy is not something which is going to end in health and happiness. The people who go down this route are still going to end up with drastically restricted lives and health problems such as osteoporosis - but they won't be draining money from the NHS because here, anorexics are only hospitalised once their BMI goes under 13.5. It's incredibly sad that people are written off in this way, because given a choice, what anorexic wouldn't choose this far less scary option?Anyway, you have a lot of other important topics to discuss on your blog but I thought it you might be interested in this."

I am interested in this. I think it is beyond sad, and very wrong. We need to stop treating anorexia as a choice and understand this is a "can't" and not a "won't." Policies that offer a "choice" to stay unconscious are cruel and misunderstand the nature of the brain condition. The way you put it: "written off in this way" is exactly right.

We need policies that aim for real recovery, not "harm reduction." I am saddened and angered by the lives thrown away by a lack of will on society's part to do what needs to be done. Policies like the one you describe would not be acceptable if what we were talking about was oxygen levels or blood sugar levels. We can at least set the standards at levels with a possibility of sustaining a recovery.

Easy? Hell, no. But why would we settle for less?


  1. Harm reduction is traditionally used in cases of drug addiction/abuse and it has been tremendously successful. However, I have never heard of it being used in the treatment of eating disorders.
    In a way, I think it is good that the harm reduction approach is being employed because it addresses the reality of anorexia; that some people are not ready to recover even though they may be aware of their problem. Traditional eating disorder treatment beliefs often posit a false dichotomy. Sufferers are either in complete denial of their condition or are actively wanting to recover. There is never any mention of those in the middle, who, for whatever reasons, are aware their habits are disordered but do not want to recover. Forcing them to recover (or turning them away if they don't "look sick" enough) will not accomplish anything in the long run. But meeting them where they are at, building a relationship with them, and encouraging them to do things to reduce the damage that they're doing to their bodies (i.e. cutting down on diet pills, drinking Pedialyte after purging, going to the doctor in order to get checked out). The key to any recovery is to build a relationship of trust with someone and acknowledging the reality of where the sufferer is at while respecting her right to decide to do whatever she wants is the way to go about it. Maybe she won't choose to recover right away but she can always do so in the future.
    In harm reduction policies regarding drug addicts, programs such as needle exchanges allow addicts to build relationships with counselors and over time they begin to trust them and talk to them more and once they have a person who accepts them for who they are and where they're at, they become more receptive to quitting. I know a heroin addict who practiced harm reduction for many years before deciding to go clean and he had been using since he was 20 (vietnam vet).
    A parallel example regarding EDs could be pro reality sites (sites that don't promote eating disorders in a "pro ana" way but that don't push recovery either-although they do encourage it). People who aren't ready to seek out professional help (or who have tried to and been turned away) can find others who are in the same position. I have been a member of a pro reality site for many years and it has saved my life on many occassions and I have developed strong relationships with others. While I have not recovered and do not plan to do so, I have reduced some behaviors and developed a consciousness about them. From this site, I get support and understanding that I don't get anywhere else. No one "encourages" me to be sick or congratulates my ability to restrict, for example. Isolation is one of the worst things for an eating disorder and most of us have nowhere to turn to and isn't it better that we are able to talk with each other than to be alone separately? Some might argue that isolation is good because the loneliness could spur someone to recover but I think that is cruel and manipulative. (and yes, I have heard of treatment providers who have said things like that).

    I'm going to end my post here even though I have a lot to say on this topic but thank you for posting an item about harm reduction.



  2. In my opinion, a BMI of 15 IS harmful -- not harm reduction -- for AN I would think maintaining a BMI of 16.5 - 17 would be more appropriate.

    The thing I found however, is how many AN sufferers do you know who are happy to maintain their weight at ANY level -- it is not as though the feeligs of fatness go away at a BMI of 15.

    For me, this was not a possibility because I would either work on recovery or lose more weight -- any other way felt directionless to me. As a psychiatric illness, it is extrememly difficult to stop weight loss once it has deterioated to that level. . .

    I think harm reduction might have its place at higher BMI's -- but it is a very sad way to live.

    1. I am much happier to accept my current stable weight range of 16.5-17.0 .It may be a sad way to live, but it is alive. Every time I've attempted treatment that demanded expectations of full restoration, I have become a failure, which only fuels suicidal ideation. If everyone would leave me alone and let me stay where I am without pressure to move toward their goal of 18.5-20.5, I wouldn't be a loser today. I would be a success. Harm reduction doesn't have to be forever. Maybe with enough time with this minimum level of nourishment, the mind will catch up with my body. WHo knows. BUT WHAT I DO KNOW is that this is working for me much better than ... suicide.

    2. I want more for you, Anonymous. Harm reduction and suicide are not the only two options. YOU ARE NOT A FAILURE. You deserve assistance and support.

    3. I agree with anonymous 100%.

      Giving severe and enduring ED patients only one option: full recovery leads many of us down the road of FAILURE, where we are additionally tagged as "treatment resistant" and "non-compliant"...

      Harm Reduction is a much better option for someone than suicide or avoiding treatment altogether when these controlling (and often punitive) treatment center tactics have historically only CREATED MORE HARM in their experience.

      I've never made it a single meal out of an inpatient program without Ed behavior due to the so far apparent 25+ yr inability to cope with weight gain...I leave treatment more suicidal than I ever was left alone with the disease.

      I live much less stressed with a BMI between 15-17.

      I may have more potential, but I'm living the best quality of life I ever have, even with some limitations associated with being underweight.

      No one says Harm Reduction ends at a low BMI. It doesn't remove full recovery from the table. It DOES, however, provide an entry option for patients who have proven to be FAILED BY the current pressure of weight restore...weight restore...weight restore...

      If that was the only way to go about it, why are so many of us repeat - revolving door - patients !?!

      Obviously, something isn't working here for a large subset of patients.

      I'm thankful for ALL PROVIDERS brave enough to offer us something we can work with in the here and now. It's life sustaining! <3

  3. When I first read this post, I was seeing red. I have since calmed down a bit and stopped sputtering and can express my thoughts clearly and coherently.

    The idea is atrocious. Flat-out. We don't ask cancer patients whether they only want a little chemo or a lot if their cancer isn't overtly fatal. We go after the tumor, guns blazing. Why would you not give someone the chance to live a cancer-free live (or as much of one as possible) if you could? Cancer can recur- it's a brutal reality of a gruesome disease.

    Anorexia is the same way. If someone has been sick for decades, they may never be able to fully shake off all the vestiges of their disease and I think a good therapist will be able to teach them how to live as full a life as possible. But to never have the chance? It makes me sick.

    All of this comes from a phenomenal misunderstanding of EDs, both what they are and how to treat them. EDs are hard to treat and relapse tends to be the rule, rather than the exception. But it's criminal to effectively resign someone to a life of misery because you don't think they're "ready" or "willing" for recovery. Guess what? People with EDs are almost never ready for recovery; I eschewed food because I was terrified of eating, not because I was "coping" with something. Will I ever be nonchalant about food again? Unlikely. I will need to learn harm reduction in the form of relapse prevention, but not in the you-don't-have-to-gain-weight kind of way. Low weight is both a symptom and a cause of the distorted AN thinking, and that's what so many people are missing.

    1. It's criminal to not offer a patient an option that is life sustaining when the other option is withholding treatment until they are ready to sign up for "full recovery" weight restoration. That's neglect...Gross neglect...

      Harm Reduction keeps the patient alive and engaged. It has proven to dramatically improve the quality of life...AND, as long as their is breath, there is hope.

      Harm reduction does not interfere with the possibility of full recovery. It does, however, put recovery back on the table for the hopeless...

      The definition of crazy is to repeat the same thing over and over expecting new results...

      Give us something new to try. Thanks


    2. Anonymous, I respect your perspective and I wish you and your family well in pursuing your future. I disagree with you on this topic, but not because I endorse the cruel status quo of refeeding people only to release them to the same repeated pattern. I believe treatment -- and caregivers -- has to align with recovery and not the eating disorder. Do do otherwise is to fool ourselves into believing that the ED means well and will be amenable to negotiation. The solution to treating people only through the first phases is to make sure care gets patients all the way back to their real selves and to protect them there until they can maintain that on their own.

      ED likes Harm Reduction, I suspect.

      When you say (in another post here) that you are less anxious at a very low BMI I won't argue. But that is the same argument for staying under the influence of drugs or alcohol. I understand why you fear recovery, I really do. The people I'm talking to here are the families and treatment providers who may feel THEY have no choice but the Harm Reduction model. I'm arguing why I do not support it.

  4. I understand your fury Carrie, but would question, what alternative is there?

    One could argue that this is simple, treatment offering a chance of full recovery.

    But, for those not willing or able to engage in the treatment options currently available, is that a real alternative?

    For children it is. There is a legal presumption that their parents have both the right and the responsibility to cooperate with clinicians to ensure that their child receives treatment although they, along with the clinicians "should involve the young people in decisions about their care" http://www.patient.co.uk/showdoc/40002288/
    The Maudsley Method which relies on parental authority over the illness has a very good record of success.

    For adults (and that's anyone over 16) the law is different. People must give their consent to treatment unless they can be judged as mentally incompetent under the mental health act. Despite much evidence to the contrary Anorexia is not considered a mental illness under the act and people cannot usually be sectioned until their weight or behaviours are an immediate danger to them. Yes, that may well be an example of the law being an ass, but it isn't being an ass just for the sake of it.

    This fascinating radio programme http://www.bbc.co.uk/programmes/b00lk1kv isn't about eating disorders, but it makes for a very interesting listen if one replaces "phobia of anaesthetic" and "the operation" with "fear of eating" and "weight gain".

    The programme discusses whether "Chris" its subject has the mental competence to make his big decision. Like an eating disorder Chris' phobia isn't considered a mental illness under the terms of the mental health act. The implication is that this isn't so much to protect the poor dear from being given a stigmatising label, as because the treatments that work for phobias (and eating disorders?) do NOT work if they are forced upon the sufferer. CBT is the featured treatment here, and in many eating disorders treatment facilities in the UK. You CANNOT give CBT against the will of the patient. It just won't work.

    Of course the ED patient can be treated in other ways. Strict behavioural programmes or even tube feeding under sedation are possible but are not long term solutions. The patient must learn eventually however long it take and however much support it needs to sustain her own weight.

    During any period when the patient is struggling with weight gain, the AN may make him or her act in very dangerous ways. Severe self-harm and para-suicidal behaviours are not unusual. Parents trying home treatment can find it just impossible to keep their loved one safe while pushing weight gain. I did.

    Very often the protocols of treatment centres (designed to avoid risk, both to the staff, other patients and to the financial health and good reputation of the organisations) do not even allow them to try.

    So if they are unable, for whatever reason, to get the patient over the sandhill to full health, specialist services very often just discharge him or her. This leaves the patient (and his or her loved ones) with no help at all save that of the local General Practitioner who as the name suggests, is a GENERAL doctor often with little or no experience or interest in eating disorders. Nearly ALL GPs are competent doctors and many many of them are deeply caring individuals, but they are very often left almost as bewildered and desperate as the parents of a sufferer about what to do with a chronic illness when secondary care has given up.

    In such cases "Harm Reduction" programmes, including the one associated with the Maudsley Hospital, where the specialists don't drop the patient like a hot potato but continue to offer support and a chance, often enhanced by such programmes as motivational therapy, are the only lifeline patients can get.

  5. So, if a patient is admitted to the hospital once and chooses harm-reduction ... if that person's weight once again falls below the 13.5 bmi threshold and she is admitted again, does she have the opportunity to choose full-recovery? Once hospitalized as adults for the first time, are patients "tracked" for life to one care plan or the other (like being educated for college vs. vocational training)?

  6. By setting the measure of health emergency below full health we hold the patient in a mental state without free will to choose recovery.

    It is not their fault they cannot walk away from the illness: it is ours.

  7. Anon Mom - yes, once in the "Harm Reduction" system a patient certainly does have the chance to change programme and go into the "recovery stream". And I would stress that individuals aren't usually offered the harm reduction programmes unless they and their care givers have tried programmes pushing for full weight restoration time and again and haven't been able to get there.

    Laura - yes, the bar is horribly low but it has been set by clinicians with great experience (even if they lack modern scientific knowledge and the vision and determination of a parent like you). I cannot help but think here of my cousin who wasn't fortunate enough to receive any modern treatment. She spent nearly two years in an old fashioned mental hospital and came out weight restored, but because she opted to go home to her parents rather than into the halfway house offered by the hospital, wasn't followed up at all and gradually lost both the weight and any health that came along with it. Being offered a programme of Harm Reduction might at least have kept her alive.

    The "choice" here, and no it's not the patient's choice, he or she is too sick to make one, may not be between limbo and the heaven of full recovery, but between limbo and the hell of death.

    Unlike individual programmes and clinicians wherever in the globe they may be situated, the NHS as a whole has an obligation to provide care "from the cradle to the grave". Sure, people are likely to get to the grave much quicker if they are at a BMI of 15 than if they are at a BMI 20 but if individuals have been failed by their parents and their clinicians and are still stuck in limbo isn't it better that someone should care for them while they are there, rather than leave them to go to hell?

    I'd be fascinated if you meet any British clinicians while you are at the conference if you could discuss this. Do they agree with the principle of offering this to some patients? If not, what do they offer their more difficult to treat patients? Do they agree that the bar is too low? If so what justification do they give for setting it there? If not what are they doing to campaign to set it higher?

  8. I would frame the questions differently.

    The bar should be set at full health AND patients should be treated compulsorily on the basis that they have a mental illness rendering them temporarily unable to make choices AND if the patient's family is unable to do the appropriate support at home or the patient has slipped through the cracks for so long his or her illness is chronic the patient should have appropriate living arrangements created.

    I do not accept that eating disorder patients are simply to be left to their illness. This is not a choice THEY are making, this is a choice WE are making. And WE as a society can make different choices.

    1. This results in treatment trauma -- and patients such as myself and peers who will no longer get that sort of so-called "help" ... Many of my peers have given up and died because of treatment trauma and not having an option for help until they are ready to agree to "full recovery model" ...

      It's senseless...

      Think outside the box. The box we've been stuffed in doesn't work for everyone...

  9. Is there any evidence the "harm reduction" model actually works even to achieve its minimal (and in my opinion unacceptable) goals? I haven't seen any evidence it does. You would think that if it were successful, the NHS in the UK would have published long term studies, following the patients treated in that fashion, showing postitive outcomes compared to other models of treatment. I haven't seen any such studies, which leads me to conclude this particular model has not been successful. That's not surprising, because the best available evidence does appear to show that the longer the anorexia illness persists, the harder it is to beat. Anything that allows it to persist, I'm against. Am I missing something?

    1. Here is a pilot study:

      If you are open to patient perspective, you may understand how my life this model opens up for "chronic" and "severe & enduring" ED patients by reading the comments here:

  10. I'm going to have to agree with my Marcella on this one (don't be too shocked, mum!). In my experience "harm reduction" is a last resort in the UK system when it comes to hospitalisations. The only people I've seen "allowed" to remain at a BMI below 19 were people with severe co-morbid conditions (schizophrenia, etc) and people who have had eating disorders for decades - I'm talking 30, 40, 50 years - and in terms of keeping them alive and functional it's worked, which is a hell of a lot better than being dead, either by starvation or suicide. When I was in hospital I really genuinely wanted to be a healthier weight - I've been aware of how sick and ugly I look when I'm underweight since I was about 17 and it brought me to tears in my worst times when I couldn't avoid mirrors - but you'd better believe I tried to push the professionals into letting me just stick at a BMI of 16-ish because the emotional pain of recovery was too great, and you'd also better believe they wouldn't stand for it. It was my first (and, touch wood, my only) hospitalisation, and although I do have co-morbid conditions which I have to deal with whatever my weight they don't just "let" patients do whatever they want. It's very much a last resort, and sometimes it's necessary.

  11. I agree with Z and Marcella to a point in that it's better than someone ending up dead, but I don't agree that it's only ever used as a last resort. Some of my friends in their early 20s are on programmes like these. Some of them have only been hospitalised once or twice. One of my friends hasn't been over a BMI of 14 in the five years I've known her despite at least one hospitalisation a year. Maybe where Z lives it's only a last resort, but that's not true of the whole of the UK.

  12. Perahps it's a case of some services reaching for the last resort when they should be offering many more options first. Whether that is because of a lack of resources, a lack of motivation or a lack of understanding about the nature of the illness is anyone's guess.

  13. Perahps it's a case of some services reaching for the last resort when they should be offering many more options first. Whether that is because of a lack of resources, a lack of motivation or a lack of understanding about the nature of the illness is anyone's guess.

  14. ^I definitely agree with that. I get the feeling that the services often reach the last resort first and write people off - anorexics are hard to deal with so lets not bother even trying to get them to accept recovery. The thing is, it's almost impossible to be motivated to recover when you're at a low weight, so how can they expect anorexics to choose for themselves? It's only when you have been eating properly for a few weeks and have gained some weight back that your cognitive faculties start to come back and you can make any sort of rational decision. I think it's all quite criminal.

  15. I have a bit of a different perspectve...as I am someone who has struggled with anorexia for over 12 years, which is more than half my live. I have been in so many treatment centers and hospitals I lost count, as my parents forced me as a child. They still forced me when my health was in danger, using the legitimate leverage that they supported me financially...providing for my needs and paying for school. I worked, but nothing that could support myself with.
    Well, eventually everyone stopped forcing as much. Maybe it's because of that, maybe it's because I just got older and more mature, or both...but I have reached out for help, go voluntarily to therapy, and even went IP when everything got too bad. Although I live in the US, the "harm reduction" track is sort of where I'm at. And it's kept me alive and out of the hospital, enabling to finish the degree which is basically the only thing in my life that the e.d. didn't destroy completely. Now I can actually maybe have the ability to start to build a life, or at least have hope for a life, that is worth recovering completely for. Am I happy? No. But I am safe. And after more than 3 years with a bmi around 15 (except 2 instances where I dropped and need 3 weeks IP to get back to 15)...I'm feeling more opent to try my therapist's suggestion of gaining 3-5 pounds and just holding there a bit...a gradual approach.
    I don't know...sometimes I WISH someone would just MAKE me get completely healthy because it's soooo hard to decide for myself. But at a time they did, and I was so unstable/unsafe...certainly not recovered or healthy.
    Choosing to try to recover and doing it by my own volition is the hard way, but maybe for me and some others it is the only way.


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