The UK’s Mental Health service is failing people with life-threatening eating disorders

Image courtesy of Renjith Krishnan / FreeDigitalPhotos.net

Image courtesy of Renjith Krishnan / FreeDigitalPhotos.net

It’s taken me a while to find a suitable image for this post. Most journalists writing about Eating Disorders (ED) like to show shocking pictures of emaciated young women, and quote death-defyingly low weights. These are not helpful to people who are in the throes of an ED. But this image – with its DNA helix, the heart beat, the haunted eyes – sums up someone suffering with an ED far more powerfully. IMHO.

Importantly, you don’t have to look skeletal to have a life-threatening illness such as Anorexia Nervosa (AN). And people’s weights are no-one’s business but their own and/or their care team’s. These two things alone, emblazoned within an article, can trigger someone with an ED into wanting to get that thin, that low. Yes, that sounds crazy, but it’s true. Having an ED like Anorexia Nervosa does that to you – it makes you totally irrational, drives you to eat less and exercise more.

First, some background information

  • Eating disorders are not a lifestyle choice – they are biological brain based illnesses
  • Anyone of any age with this predisposition can get an ED, women and men
  • ED’s are not always about ‘control’ – control is usually a symptom of the illness, not necessarily the cause
  • ED’s are not necessarily the result of trauma, although a trauma may trigger an ED if you’re predisposed to one
  • Many sufferers tend to have had depression, anxiety or a similar condition prior to the onset of their ED
  • Whilst in the depths of an ED, sufferers will lie to ‘protect’ their illness, both to family and to their treatment teams. They can be very convincing, which can have devastating effects if they are believed
  • An ED can be simply a diet that’s gone too far, where the weight has dropped below your ‘normal, healthy’ range
  • Being underweight is the usual trigger of an ED
  • The most important treatment for most ED’s, especially Anorexia Nervosa where the weight has dropped too low, is food. FOOD IS MEDICINE!
  • Therapies won’t necessarily work until the body weight is restored. Only once the weight has been restored and maintained for at least nine months will the ‘disordered thinking’ improve
  • Recovery is possible with the right treatment

And that last point is my biggest bug-bear about the UK’s mental health system. We don’t get the right treatment! Sufferers of all ages are being failed by the system as it doesn’t treat them either correctly or for long enough to get to the point where recovery is possible. Of course, it doesn’t help that the NHS in general and mental health care in particular is so under-resourced, but it seems to me that on top of all that, the ED services are also suffering a severe lack of up to date knowledge. A double whammy for ED sufferers – not enough treatment or care, and what is there is extremely poor and working on out-dated information.

Living in limbo

Currently, the mental health care system leaves our loved ones suffering with ED’s in limbo. A living hell. Not ill enough to be in hospital, but not well enough to work or study. Let alone feel well enough to have a social life. ED’s are very isolating.

Left alone, an individual with an ED could slide down a slippery slope and not realise how ill they are. A symptom of the illness is that they push loved ones away (as my daughter did to me), and may even refuse treatment. Then, if people are not watching out for them, they will die. But if they’re lucky and caught in time they’ll be Sectioned under the Mental Health Act, sent to hospital and treated for months. But, frustratingly, they’re then discharged at too low a weight!

According to our mental health system, reaching a BMI of around 15 or 16 is, apparently, ‘enough’ for someone to be discharged back home where they are then left in the charge of their local community mental health team. If they’re lucky, the team will work closely with them and help them to keep improving. But in my experience, that doesn’t happen much. Certainly my daughter’s ‘specialist’ ED team – SEDCAS (Severe Eating Disorders Consultation and Assessment Service) – certainly don’t seem to be up to date at all. I’d like them to see this extremely insightful blog.

The optimum BMI for an individual to get into recovery is 21

…21! That’s quite a leap, from 15 to 21. How can anyone, especially adults entrenched in their ED’s, get themselves up to a BMI of 21 without intensive, up to date, professional treatment? In my opinion, it’s almost impossible. That’s where our system is specifically, crucially, failing people with ED’s.

Averil Hart is one young lady who lost her life because of the lack of adequate care. According to her father, Nic Hart: “These organisations, the Norfolk Community Eating Disorder service (NCEDS) and the University of East Anglia Medical Centre (UEAMC) were not fit for purpose and failed to deliver even basic care to Averil.” Hers is a heartbreaking story, and she’s not the only one who’s lost her life to negligent care. It’s happening everywhere. Australia is another country that needs a huge injection of resources into their ED treatment.

And here’s another heartbreaking example of the lack of proper knowledge and care here in the UK. This post is particularly poignant as the author, Charlotte Bevan, died earlier this year of breast cancer. She was an amazing woman who advocated tirelessly for families struggling with our appalling ED services, virtually up until the end of her life.

The UK’s NHS mental health services needs a huge kick up the back side. It needs a big wake up call. Who can help? Norman Lamb, the Care & Support Minister, is trying, I gather. But it needs to happen sooner, not later!

I feel so helpless. I want … NEED! … my daughter and others to have the treatment that they deserve. What can we do to get the Government to help vastly improve our ED services? Who can help? Help! Please help!

 

 

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3 thoughts on “The UK’s Mental Health service is failing people with life-threatening eating disorders

  1. bjj12

    Jenny – I could not agree more with your excellent article. My daughter (who has sadly now rejected me…) has been anorexic for 7 years. As a “recovered” anorexic I spotted the signs early on but the “rules” were that she could not be referred by her GP until her BMI hit a particularly low level. She inevitably did this… then 18 month waiting list for outpatient therapy during which we had a sectioning team visit due to GP picking up on her weight being dangerously low. Ridiculously short hospital stays where medical team listened to the garbage that she told them about how well she would do now when she got out – she was discharged without consultation with her family. She was also at UEA and under Norfolk Community Eating Disorder Service who kept assuring me she was being well-looked after. She came home with a BMI of 12 (no action had been taken). Need I say more….

    More and much much more needs to be done. I am on South London and Maudsley’s Involvement Register as a carer and believe me I keep trying….

    Reply
    1. Jen Post author

      I’m so sorry to hear of your experience and just hope that one day your daughter gets the help and treatment that she deserves. Perhaps then she’ll realise what you are trying to do for her and return to you as a loving, healthy daughter. In the meantime, we’ll keep trying, we’ll keep fighting!

      Reply

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