I read with sadness and a truly heavy heart that an investigation into treatment of eating disorders in the NHS is such that at least twelve people have died in the last seven years because of failings in their treatment and care.
I would be amazed if this figure wasn’t in actuality much higher than reported and many people who have ended their own lives, or have fallen through the gaping holes in the NHS provision for people experiencing eating disorders and subsequently died are not taken into account.
I have been working with eating disorders of all types since I first started my journey to becoming a therapist. When I started working as a mental health support worker at my first therapeutic community there were five clients in residence and another client who was just in the process of leaving having successfully completed their treatment and all of the five who were still in treatment had some form of disordered eating behaviour.
Of the eight or nine residents I worked with in that first year, nearly every single one of them had some issue around eating or food. Often this was not included in their primary diagnosis, those people had been referred to us for treatment for personality disorders, often with a dual diagnosis of bipolar disorder or occasionally with bulimia. However, living as they did 24/7 in a therapeutic environment, eating together for three meals a day, the negative food related behaviours quickly became apparent.
Some residents over ate, other binged and purged, others tried to avoid eating at all costs, all of them had complex and entrenched beliefs around the way they chose to eat and all were linked into issues around self and control.
Every person I have ever worked with who has any form of eating disorder has had issues around self esteem and had a negative internal self view. How else can someone starve themselves? They are certainly not doing it because they feel good about themselves. Another common factor was the need to control what was entering or exiting their body. These control issues become extremely relevant and important when considering the kind of support and treatment a person with an existing eating disorder needs.
In my experience, if one meets control with an over controlling treatment plan, then the eating disorder worsens, even if on the surface the person appears to be improving – in eating disorder terms, the person begins to increase their weight or lose weight as they need to – this improvement is often a manipulation. The person in treatment does what they need to so the controls around them are loosened. They are allowed to eat without 1-2-1 observation, they are allowed out by themselves, or they are allowed home where they again can control what they eat and the whole merry go round starts again as they are allowed to self medicate and soothe themselves again through having full control over their behaviours and beliefs.
A big part of the problem is the underfunded and under resourced Eating Disorder Units (EDU’s) that are run by the NHS. I would never wish anyone who works on an EDU to read this and believe that I was being negative about them as I know that they do their very best to help the people in their care. The give and do what they can for their clients, often getting to the point of burning out and becoming unwell themselves as a result.
I do believe though that EDU’s currently are a breeding ground for disordered behaviours as the over worked and over stressed staff are unable to monitor closely enough what are an already overly controlling and quite manipulative client group. When I have spoken to people in my practice about what their experiences have been on EDU’s, they invariable say something along the lines of, ‘I went into the first EDU struggling and confused, I left having learned to be a much better anorexic/bulimic/etc’. In other words the manipulative and controlling nature of the disorder means that the people in treatment effectively learn from each other how to get away with more things and play the system so that they can get what they believe they need. The children therefore treat the children.
I think the whole approach to treating eating disorders at this time needs to be looked at with honesty and openness so we can look to changing how we work with people who experience them. The disordered behaviour is seen as the core issue currently rather than what they are, which is a symptom, not the cause of a persons issues.
By focussing on a persons weight and not addressing what is happening for that person under the surface, we miss the point entirely and the eating disordered person gets missed. Ironically, this often suits them down to the ground as it is what they are used to, or what they are hoping to achieve, that being avoidance of dealing with their core issues and distracting the health professionals from the trauma/distress/neglect/anxiety/wounds, that feel too painful to open up and explore.
The starving of self, the bingeing then purging, the overeating then holding onto the feeling of bloating/disgust toward self, whichever the person is using to show the world their struggle are not just symptomatic, they are symbolic of the internal turmoil of that person. It is that turmoil, struggle and pain that should be the focus of the individual’s treatment. Not the symptom.
I have worked with mostly adults around these kinds of issues. It is complex, lengthy and often painful work. Initially I invariably find I am having to re-build trust in therapy itself as the adult person has had some many negative experiences within EDU’s or with individual counsellors that they have little faith I can or will be able to do anything different to those that have treated or supported them before. This work is often like walking through treacle, slow, frustrating and exhausting (for the client more than myself). I believe that this work would be much more easily achieved and completed successfully if the person received the treatment they needed when they first presented into the system as needing help when they were still children and their behaviours would be less entrenched and the underlying issues would be closer to the surface and more accessible for support, processing and recovery.
At the moment though, I fear that the opposite is true and many children are being treated in a way that just stores up their problems until they explode out in adult life and lead them to feel they have no option but to end their life or continue to eat in a way that they know will shorten their life expectancy and limit them severely in terms of their relationships, work and what they would like to achieve in their life.
A link to the article that inspired this blog is below:
https://www.theguardian.com/society/2020/jan/19/eating-disorders-12-deaths-in-seven-years-led-to-coroner-warnings