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Archive for the ‘Hospital treatment’ Category

It gets so frustrating when even treatment centres cannot do the ‘right’ thing by eating disorder patients. LOL, really the fact that you managed to get a coveted position in a treatment centre is a major achievement in itself – that means you actually found a doctor who believes you have an eating disorder and got you a referral to the treatment centre.  What do you do when the whole thing turns out to be intensely disappointing. What do you do when you are released, you are no better than when you were admitted.

So up front, I get why treatment centres treat and run the programs they do. They have many different people, all unique and all not going to respond to just one form of treatment. So the treatment centre to run effectively, also has to streamline what they can and can’t deliver. That is reasonable. I also understand that they can’t also perform miracles. Basically the patient has to be willing to comply in the end with eating and wanting to recover.

But …

  1. They promise to not discharged unless fully weight restored – but they do.
  2.  They work on punishment and penalties – but the rest of the eating disorder treatment approaches don’t (and they are the ones with the most successful recovery stats).
  3. Some patients have been back over 3 times (several patients) – doesn’t that send a clear message ‘it’s not working’.
  4. Therapy is with-held unless fully weight restored. (see point 1 for how ludicrous this is).
  5. For critical patients they can quite easily discharge you after a few weeks, barely beginning your recovery program.
  6. They send you to their ‘preferred’ ongoing treatment psychologists, ignoring your home team. This creates ill feeling back at home and also introduces another unknown person into the recovery program.
  7. Critical patients are thrown in with groups of patients on their 3-4th visit who treat the centre as a party atmosphere. They are exposed to new tricks, manipulations, ways of purging etc.
  8. Treatment centres run down previous care and treatment, without knowing facts etc and make you feel you are even trying to care.
  9. I am not talking about adults either, but kids, young teenagers in these treatment centres.

get serious about treating eating disorders

The goal of initial treatment is to fully weight restore. This is supposed to ground rule wherever you are treated. If you don’t get that much at least, then what is the point of the treatment centre or hospital to start with. You might have just as well stayed home and tried to treat yourself. It also builds a mistrust in the treatment centre and their ability to really help you. Treatment centres should be aware after treating so many patients, that patients only eat to get out. So releasing them under goal weight and believing that they will eat at home, is also to the point of ludicrous.

A few weeks in a treatment centre (unless you are incredibly willing to change) is also not enough time. In anorexia cases and severe weight loss, weight simply cannot be restored in that time, nor can health, mind or any psychology work be done to start to change behaviours. Again all this does is, help the anorexia dig in deeper and become more chronic.

And what really, really annoys me, is the treatment centres and professionals who think you CANNOT do psychological treatment when underweight. There is SOOOOO much more to the psychological treatment than just getting cooperation and changing behaviours. If our team had taken that approach, then nothing would have been started til much later. Part of the whole concept of getting Sophie to eat in hospital, was talking about the psychological hold the anorexia had on her. The psychiatrist spent time every week with her, just gently stating the same points and discussing the illness. Whilst Sophie didn’t always respond, the seeds were sown. We could all see that she could begin to glimpse the anorexia as different to her and try to grasp what she needed to do. Of course it was beyond her to try to change behaviour much, but the seeds where there, she had already started on the right track BECAUSE therapy was started at a low weight and in hospital.

The biggest gain, is creating the relationship between sufferer and treatment professional, whether counsellor, psychiatrist or psychologist. Whilst many therapies points and techniques do need a receptive and working mind, the constant therapy appointments at the early stages of weight gain and recovery is gold. When Sophie left hospital the first time, she already had relationship beginning with her team. She learned through constant contact, this team was committed to her. The beginnings of trust were developing. They may not have been able to change her mind yet, but she knew that they were going to stick with her and bring her through. She also had the gentle repetition of the initial psychological separation from the anorexia already happening.

Running down previous treatment therapies, people and hospital treatments is unprofessional and really unhelpful to both sufferer and carer. There is no ‘one’ perfect fix. Why do professional assume their treatment centre offers the best and only way. Who gives them the right to run down others, particulary when they aren’t even delivering the appropriate level of base care. Different techniques work for different people not a one size fits all. You may not agree with another’s treatment ideas, but that is not to say they are wrong, nor that they won’t work.

If a treatment centre cannot even offer the basic, long term care and much needed psychological care, then what hope is there when your loved one comes home still failing, still underweight, still refusing to eat. Where do you go for help then? In rural, regional areas there are no choices available. In small countries, you are lucky to have only one treatment centre – which if that fails in its duty, then what next. We are not providing appropriate care nor offering solutions when we send home our patients still underweight, with little or no therapy and all we do is create distrust in centres and hospitals, distrust of health care professionals and allow the eating disorders to tighten/deepen their hold.

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Relapse is not a failure point. It is not a weak point.
It is not the fault of parent/carer or sufferer.

Relapse is very much a normal part of having and recovering from an eating disorder. 

From the outset eating disorders are not like any other illness. There is no definite point of recovery. There is no magic medication or treatment plan. There is no knowing how the illness changes or affects your loved one. No straight path back to health. That is the first point that must be clear to all. The second point is that the huge majority of sufferers will relapse. Third point, the relapses will get longer apart and not as deep. There is light at the end of the tunnel.

Because of it’s nature and the way the illness works in the mind there are many ups, downs and u-turns in recovery. Relapse is normal and a part of this. How strong the relapse and how many times relapse happens is just part of the unique journey to recovery. It cannot be predicted.

Re-entering a treatment centre or hospital again, is not a failure point either. If that is what it takes to keep your loved one safe, then that is what happens. It is not a bad thing or a shameful thing to go back into treatment. It is about keeping them safe until they are ready to have another go at recovery.

The brain for sufferers doesn’t begin to even breathe or start to function until correct BMI weight is gained. The longer correct weight is maintained, the more the brain will improve and the separation from the eating disorder can occur. It is a 6 month minimum of correct weight to achieve the beginnings of this. You need at least a year of correct stable weight to really start the forward progress of recovery of both mind and body. These 6-12 months means that no relapse happens in between either, otherwise you extend the period of time needed to repair. So you can see how difficult and long the process is just to begin to repair brain and body.

All parents/carers stay on tenter hooks during this time. One day at a time towards victory. There are many down turns and then picking up the pace again. As long as the down turns are not viewed as defeat. It is part of the essential lessons and learning of how to learn to push away the eating disorder. It is learning why it is your ‘safe zone’ and what things trigger the need for the safe zone. It is essential these points are learned, and often relapse is the only way to learn them.

The reason for this almost repeat post of some time ago, is the parents I have met who are terrified or shamed that their son or daughter can’t get well. That they should be further along and not relapsing, or worse looking like they may need in-patient treatment again. It is what it is in the end and you can’t fight against it or change it. Accepting the path recovery takes, means the less emotional baggage you carry.

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I have lost count of the families who still want the magic fix. You know the one pill solution – “where is the fix they cry”. I understand how they feel, but the reality is there is no FIX. There is no magic pill or treatment. No one stop shop that has the answer.

Research is making progress and yes there will in the future be better outcomes, but not yet nor in the short term future. The complexity of eating disorders will always be there. Research shows that environment, genetics etc all play a part in the development of eating disorders.

mixed eating disorder treatmentsSo treatment becomes a mixed bag.

  • NG feeds, or
  • NG feeds + food by mouth, or
  • just food by mouth, or
  • nutrition drinks + food, or
  • just nutrition drinks, or
  • inpatient then outpatient, or
  • inpatient then therapists, or
  • mix of inpatient and outpatient
  • Maudsley or other FBT
  • doctor/nurse/medical regular appointments

… catching on?

Therapy will be a mix of:

  • dietitian/nutritionist
  • psychologist/counsellor
  • psychiatrist/paediatrician
  • CBT, DBT, hypno, massage, expressive therapy (art, dance etc)
  • journals/diaries
  • meal plans/meal diaries
  • support team/friends/family
  • intuitive eating
  • medication/supplements
  • distraction techniques/recovery toolbox

Personally it is:

  • personal goals/achievements
  • commitment
  • hope
  • honesty
  • learning both the costs and benefits

You may find other ways help you than what I have listed or know of. It isn’t one size fits all. But what is important to know and understand, the mixed lot of therapies and treatments is what achieves recovery. It is a lot of work and struggle to find what works for you or your loved one. But one that is worth it.

Ignoring the ED and hoping it goes away, or hoping someone will give you the magic fix is not going to bring recovery.

Hoping you will be the exception to the rule is also a very rare outcome.

Recovery is real, full recovery is also real. Finding the mix that works for you is what creates and grows the recovery.

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You realise you are now in a different place when no matter how ordinary the things you do, create memories or triggers. Nothing is ever the same again is it. Once you have had an eating disorders, the life others take fore-granted is not available to you.

We came to the day surgery place. Sophie was so relieved we weren’t in the main hospital where she had been an inpatient for the anorexia. She missed that point made at the dentist’s office.

Next the lady at the counter asked for Sophie’s arm to put her medical ID bracelet on. Sophie physically and mentally faltered. This was really hard for her to do, again too many memories of hospital and that ID bracelet being there for weeks. She actually had to push through this to place her arm up to get the bracelet on.

And finally, you need to be weighed for the anaesthetic. I deliberately didn’t say anything about this. I knew she would be very worried. Definite trigger. She came back and it wasn’t about the wisdom teeth it was all about the figure on the scale. “I am so heavy”, “Were you ever this weight”, “What am I going to do about this”….. It was a case of outlining the benefits – you have a life, you have full brain capacity back, you are healthy, you are happy, it is not about the number on the scale. But the time and place were also not in favour of my reply either.

For now while she recovers from the surgery, the weight issue is tucked back in her mind. But it will come back. That much I know. How strong or what she does with it depends upon her belief in her own recovery.

Am thrilled though the surgery effects are minimal. Her pain level is pretty good, minimal swelling, no problems. Just very tired mainly. Am blessed with that. She is also loving being the centre of my attention again and being cared for.

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time makes a differenceEach time I stop and look back, I can see how far we have come. How much my daughter has matured and stabilised. Someone recently said, “She is just blossoming”. YES!! (Oh and she chose the photo on right to go on this post)

Since leaving school, she hasn’t struggled with the usual ‘I’m bored’ and the triggers that can feed from that. Last holiday she did well too, but she prepared by making sure she had things to do. This time she didn’t even prepare. She sorta just let it flow and happen around her. That’s pretty cool.

The fact that Soph is actually studying reasonably, not panicking (well not yet) and still eating normally is a very good sign. If she was starting to fear and be insecure her eating habits would be the first sign all wasn’t well. But so far so good. But whatever happens is still ok. Only a year ago she was a mess about the thought of exams and cancelled them all.

Tomorrow she gets all 4 wisdom teeth out. So yes, today she has been hyper, very talkative (almost manic) and stayed close to me (with big eyes) – she says she is fine, but her behaviour gives her away.  At least is is a late morning operation (all in hospital) and we can be home early afternoon and get her settled. How she goes after that I don’t know – apart from being very painful and swollen. What I hope most, is that there are no complications or prolonged changes to her eating pattern. That will be enough to trigger the eating disorder behaviour. God has it all in His hands, and whatever the outcome she will be cared for. That is all I can do.

So the fridge is ready with soft foods, medicine cabinet full of pain killers, ice packs freezing, movies and books stocked up. Good to go. I will tell her what to expect from surgery in the morning. It isn’t a horrific thing to talk about, but even the slightest knowledge will worry Sophie. She needs a good sleep tonight instead of worrying.

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early intervention for eating disorder recoveryResearch is looking at into the very early stages of recovery  with the thought there may be very little ability on the part of the sufferer to respond to psychological treatment. This train of thought has also been voiced by others. Some of those raising this point of view are hospitals and medical centres – it always comes down to dollars. If an eating disorder sufferer is not suitably nourished enough for the brain to work, why bother spending money on giving psychological therapy to them at this stage.

Fair point. BUT. I have watched our team from the onset of hospitalisation with many girls start the full process right from day one. Most in-patient treatment centres do too. Our team didn’t and still doesn’t consider it too early to start psychological therapy, when both body and brain are malnourished. Within the depths of the eating disorder, the person is still there. And that is who they are trying to reach. You  get glimpses of the person during early treatment. The constant, drip-feed and small seeds of thought laid by either a psychiatrist or psychologist (even a social welfare worker) are incredibly invaluable. Each little seed takes root and very slowly knowledge about the eating disorder illness  prepares the sufferer for deeper treatment later. I watched my daughter and others, slowly see a light turn on – even though their brains and body were still malnourished and weak. They could start to understand a little that this wasn’t normal, that this illness was something bigger than them, and that it would destroy them if left alone.

Also just as invaluable, is the trust groundwork that is laid. Though the girls didn’t make great leaps in recovery in hospital (apart from weight gain), they learned to start slowly trusting the medical team. The team didn’t give up. They didn’t run away when the girls were sneaky, rude, defiant etc. The team kept turning up and believing in them. This constant show of belief and strength started the building of trust for an ongoing relationship.

By the time Sophie was released from hospital she knew enough the team wasn’t going anywhere in the short-term. She continued to test the teams ability to stay with her, and accept her as she was, to save her even when she didn’t want to save herself. It took 18mths on average with each team member for her to finally trust. But the seeds of trust and knowing her team took place in hospital – again while she was still malnourished. Even those following Maudsley or FBT have therapists, dietitians etc on board from the very start of the recovery period.

Unless there is trust in the relationship of therapist and patient, there will never be any real openness, honesty and intimacy. To gain recovery you have to believe and trust your team.

It is never too early to start therapy with an eating disorder sufferer. Early intervention is not just about weight restoration. It is about bringing the whole person back, slowly, carefully, and wholly.

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professional diagnosis of eating disordersThis post from The Guardian highlights my previous post about professional care for eating disorder treatment. The points listed are below are critical and give a good indication of what to look for when searching for professional help. It is far too true that many don’t receive respect and aren’t believed. All this does is entrench the ED further and delay seeking further help.

Over the course of two years, I have met with 40 young women and men who have shared on film honest details about their experiences of eating disorders. Their hope is that sharing their stories will help other people who are similarly affected to feel less alone and encourage them to seek help.

The research shows that common myths about the illness have prevented many young people from getting the treatment and support they needed, from family, friends and even the health service.

During the course of their eating disorder, young people came into contact with many different types of health professionals including GPs, nurses, counsellors, psychologists, psychiatrists, dieticians, social workers and other support workers.

There are some things that health professionals should know when dealing with a young person living with and recovering from an eating disorder.

Anyone can have an eating disorder

Anyone can become ill with an eating disorder. Eating disorders affect people of all ages, backgrounds, sexualities, both men and women. You can’t tell if a person has an eating disorder by just looking at them.

First point of contact is often critical

This first contact with services was often a huge step for a young person. People often found it very difficult to talk about what was going on, trying to hide their problems and it could take months, even years, to seek help. The way they were treated at this point could have a lasting, positive or negative, impact.

Young people hoped that the health professionals would realise just how hard asking for help was and to help nurture and support their confidence to stay in contact with services.

Early intervention is key

Young people often felt that people struggled to recognise the psychological symptoms of eating disorders as well as the range of different eating disorders.

If those who haven’t yet developed a full-blown eating disorder could be recognised, they can also be helped earlier. This is critical, as the longer eating disorders are left undiagnosed and untreated, the more serious and harder to treat they can become.

Effective, early intervention could be achieved when health practitioners were knowledgeable, well trained, sensitive and proactive.

Eating disorders are about emotions and behaviours, not just about weight

A common myth that many of the young people had come across was the thought that people with eating disorders were always very underweight. This idea had made it harder for some to get treatment and support or even to be taken seriously by their doctor.

In some cases, young people felt that the only way for them to be taken seriously and be able to access eating disorder services was to lose more weight. This could have serious consequences; the more weight they lost, the harder it was for them to be able to seek or accept help.

See the whole person, not just the eating disorder

Once in contact with health services, above all else, young people wanted not just to be seen “as an eating disorder” but to be treated as a whole person. It was important that they felt treated as individuals and for health professionals to realise that everyone responded differently.

A good health professional also tried to engage young people on other things than just the eating disorder, hobbies or interests.

Respect the person regardless of age

Feeling respected, listened to and being given the space to explain things from their perspective was important for young people during treatment and recovery.

Professionals should take their time and find out what was going on for that particular person, not act on assumptions. Health professionals shouldn’t patronise or dismiss issues that were important to the person in front of them.

Ulla Räisänen is a senior researcher with the health experiences research group at University of Oxford, and was responsible for conducting the study published on Youthhealthtalk.org

http://www.guardian.co.uk/healthcare-network/2013/feb/12/eating-disorders-health-professionals-key-points

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