Charlotte Robinson was an incredibly bright, energetic, and well-liked young woman. She was working towards her A-levels, and hoping to attend Cambridge University. But days before her results arrived, Charlotte died. An eating disorder had left her dangerously weak, and she lost her fight with a sudden bout of pneumonia. When her A-level results arrived, she had achieved four As.
The inquest heard it had taken five weeks between Charlotte seeing her GP and an assessment being carried out by a mental health nurse, and it then took another month for any help to start. If help had been given sooner, Charlotte might have been celebrating her 26th today.
In over a decade as a Member of Parliament, Charlotte’s story is one of the most desperately cruel I have seen. As constituency MP I have campaigned with her parents to improve eating disorder services locally. But the Robinson family’s experience is sadly all too common. Across the country, eating disorder services too often are simply not good enough.
Eating disorders are a growing challenge in Britain, with NICE estimating that 1.6 million people in the UK are affected. Just months ago, research revealed that an increasing number of young people are being admitted to hospital for treatment of eating disorders, with those between 14 and 25 most likely to be affected. And anorexia is the biggest killer of any psychiatric disorder: 15% of patients die before the age of 40.
Earlier this week, Nick Clegg announced that he had secured £150m of investment to transform eating disorder services for children and young people across the country. The money will help deliver quick access to treatment, and end the cliff edge transition for young people when they turn 18. And we will work towards establishing national waiting time and access standards by 2016.
In government I have been determined to tackle the poor standards of mental health services for children and young people that exist in many parts of the country. That’s why I launched a Taskforce of both experts and service users themselves, to look at how we can join up services and make it easier for young people to access the support they need.
Better care for eating disorders is a top priority and this investment will help drive up standards so that every young person gets a fair opportunity in life. I will be working closely with the Taskforce in coming months to ensure we make as much progress as possible in young people’s mental health services. And above all, I will be driving forwards the changes announced by Nick this week so that tragedies like Charlotte’s become a thing of the past.
* Norman Lamb is MP for North Norfolk and was Liberal Democrat Minister of State at the Department of Health until May 2015. He now chairs the Science and Technology Select Committee
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27 Comments
Is the £150 million new money or is it just coming out of the normal NHS budget? After the Autumn Statement – co-author Nick Clegg – and the massive cuts in public services required, I’d be surprised if there was any extra cash. I hope it’s not just a case of taking from the budget of one worthy cause to give to another equally worthy one.
The Kings Fund have an election tracker to make sense of the competing PR claims : http://election.kingsfund.org.uk/?party=Liberal%20Democrat.
it is a bit tricky to find straight answers on this but how many people die each year directly as a result of an eating disorder? The stats in the article are meaningless numbers that are impossible to compare to other illnesses but are clearly designed to maximise dramatic effect. Estimates. Research. Etc. But there are records of causes of death that should easily give an very accurate figure so call me suspicious but why bandy around other numbers instead of just telling it straight.
29% of deaths are caused by cancer. 28% by cardiac disease, 15% from respiratory disease. Where do eating disorders come. According to the ONS in 2013, 54 people out of 506,790 died of eating disorders. So not a top priority if prioritisation is based on mortality and ONS real data rather than speculative estimates is to be believed. The £150m allocated equates to £2.7m per death. Is that really the most effective spend?
If you read the article it kind of implies 1.6m sufferers, 15% of anorexia patients dying before the age if 40. You’re led on a path towards 240,000 deaths. The ONS says 21 of the 54 deaths were down to anorexia.
So whilst I can sympathise with a desire to better address eating disorders and their treatment would someone mind explaining the mangled numbers and why it was thought a good idea to over-egg the pudding to this extent. Never trust a politician when they start quoting selective estimates.
Sorry if I sound heartless on this but I hate attempts to mislead no matter how worthy the cause. Just tell the truth.
@Stevan Rose
“If you read the article it kind of implies 1.6m sufferers, 15% of anorexia patients dying before the age if 40. You’re led on a path towards 240,000 deaths.”
No, unless you think that anorexia is the only eating disorder. In fact only around 10% of eating disorders are anorexia. That implies around 160,000 sufferers.
“According to the ONS in 2013, 54 people out of 506,790 died of eating disorders. The ONS says 21 of the 54 deaths were down to anorexia.”
Do those figures include deaths where anorexia is a factor but not the direct cause of death? Studies show that many anorexia sufferers die from things like suicide and substance abuse.
Eating disorders wreck lives and much more money is needed to tackle the problem, so anything really extra is welcome.. We also need to get to the bottom of how and why these disorders develop and to devise prevention strategies if at all possible – through the PHSE curriculum for example. As long ago as 2000, the BMA wrote an excellent report ‘Eating disorders, body image & the media’ with many useful recommendations which probably still hold true today. Our society’s obsession with the media and image and with food and dieting must be a factor here, but the enormous pressures facing young people at school with endless testing and exams must also play a part. I know from a personal acquaintance of mine that bullying at school can also trigger eating disorders. Sometimes teenagers feel the only thing they can control n their lives is the food they eat.
Judy : The problem is that I doubt that in reality there is ‘anything extra’.
@Stuart. So you are trying to say that quoting 1.6m and 15% dying is not intended mislead the reader into thinking the fatalities are significantly higher than they really are. Because the actual data does not support the point. Even on your number that wasn’t in the article I am being led towards 24000 anorexia deaths not 21 as officially recorded.
The ONS data tells you what doctors put on actual death certificates. What studies. By whom. With what sample size. Where. Meaningless statements without that with no way of telling whether this explains the incredible gap. This article strikes me as one that starts with a headline and when the data doesn’t fit seeks to bamboozle by incorporating large numbers that are not what they seem. That kind of approach undermines rather than supports the message.
Judy, your points are well made but they are not well served by misleading political spin .
@Judy Abel
I agree with you about the seriousness of the problem and the need to get to the bottom of how and why it happens.
However we need to be very careful about resorting to simplistic explanations like thin models and dieting, which sadly is what the government (or certain parts of it) have been wont to do in recent years. Despite decades of studies, I don’t think (though someone correct me if I’m wrong) that anybody has identified a causal link between images of thin models and anorexia. The true causes are many and various, and include genetic factors, pre-existing psychological illnesses, and other aspects of culture. We won’t help people with eating disorders by pushing an explanation that simply has no basis in fact. Anorexia even occurs in blind people who have never seen an image of a thin model in their lives.
For the influence of genetics see :-
http://www.medpagetoday.com/Genetics/GeneralGenetics/2800
@Stevan Rose
Perhaps you need to spend less time writing critical posts and a little more time actually reading the articles.
Nowhere does Norman Lamb suggest or imply there are 1.6m anorexia sufferers. The article states very clearly :-
“Eating disorders are a growing challenge in Britain, with NICE estimating that 1.6 million people in the UK are affected.”
“What studies. By whom. With what sample size. Where.”
That’s enough questions to keep a psychology student busy for a week! I only have the time to direct you to one study, one meta-study, and one article :-
http://bjp.rcpsych.org/content/194/1/10.full
http://www.iop.kcl.ac.uk/iopweb/blob/downloads/event/2012618_e_1605_Mortality_in_anorexia.pdf
http://www.nytimes.com/health/guides/disease/anorexia-nervosa/complications-of-anorexia.html
I would refer you to the British Medical Association study I mentioned, which supports the idea about body image and the media being potential triggers for eating disorders.
http://web.bma.org.uk/pressrel.nsf/wall/784D03804FA98F41802568F50054326A?OpenDocument
Of course there are other factors at play, but bullying is another known trigger. For example the Mental Health Foundation states on its website:
“Eating disorders usually have underlying causes. For example, if you are a teenager, hormone changes and lack of confidence, or problems such as bullying or difficulties with schoolwork, can trigger the conditions. Refusing or binging on food may make you feel you have some control over your life.”
I think is a positive initiative and we should welcome it.
@Judy
Unfortunately the study itself appears to be unavailable (dead link), but the use of words like “may” supports my claim that no definite causal link has been found (at least that I am aware of).
Other studies have shown that images of larger models can also have a negative effect on women’s body image (more so than the thin models for some women), so where does that lead us? Even if we banned images of all models, that wouldn’t work, as anorexia has been found to be prevalent even in conservative religious cultures where images of models are non-existant.
I’m not suggesting for one moment that this is not an area worthy of further investigation. I want all potential causes or aggravating factors to be investigated. All I’m saying is that we need to be very careful not to put undue emphasis on unproven and relatively minor causes or triggers, while overlooking the much more proven and prevalent causes.
I’ve just searched for report using the link I provided. I found it straight away!! I didn’t create a hyperlink, maybe that’s why. I worked at the BMA for eight years and this report was ground-breaking at the time. I believe much if what it says still holds good.
@Judy
Your link to the press release works fine, but the link within there to the actual full report is dead.
Have you read the Swedish report I linked to on the influence of genetics?
The fact is that this is a very complex issue (as with all psychological disorders) and we’re discovering new things all the time.
Well it obviously isn’t going to happen in Devon where “obesity” has been determined as a reason to refuse NHS treatment by the CCG.
Ben Coe — you may have misunderstood. What is being suggested in Devon is not to refuse “treatment” quite the opposite. It is about surgery not about treatment.
Morbid obesity is often a very good medical reason to avoid or postpone surgery: the alternative might be that the patient dies during or shortly after the surgery.
Encouraging morbidly obese patients to lose weight before an operation is almost always in the best interests of the patient.
Back in October an NHS memo was leaked.
http://www.westernmorningnews.co.uk/Smokers-morbidly-obese-people-denied-surgery-quit/story-23573610-detail/story.html
This report said —
According to the memo from NEW Devon CCG managing director John Finn, …. a series of measures must be undertaken designed to “encourage patients to contribute to improving their own health outcomes”.
These include:
*Requiring morbidly obese patients to lose weight prior to routine surgery
*Requiring smokers to quit for at least six weeks prior to routine surgery.
“Perhaps you need to spend less time writing critical posts and a little more time actually reading the articles.”
I read the article 4 or 5 times to be sure. I did note the “but I didn’t say that” plausible deniability option built in should anyone, such as myself, challenge it.
Nevertheless by quoting two substantial but actually unrelated numbers side by side there is a clear intention to mislead the reader into believing deaths are 1000 times higher than they actually are. It is a mind trick. A type of mind trick that causes the public to distrust anything a politician says and ultimately puts them off voting. It is disingenuous if it is not technically dishonest. Worse, it undermines the intent, which is surely to gather support to put effort and resources into more effectively dealing with a serious health issue.
Whilst serious and in need of resources, eating disorders are not, or should not, be a top priority compared to cancer, and cardiac and respiratory diseases. The whole point of priorities are that not everything can be a top priority and choices have to be made based on objective impact analysis. A health minister that promotes eating disorders above or to the same level as cancer, and cardiac and respiratory diseases is, I suggest, working to the wrong priorities. Frighteningly so, and hence I make no apology for being critical of the article. Which does not mean I oppose action to improve treatment of eating disorders. Just promote it honestly and without the tricks.
John Tilley
“Encouraging morbidly obese patients to lose weight before an operation is almost always in the best interests of the patient.”
There is big difference between “encouraging” and refusing them surgery if they don’t lose weight. Thats not much different from “encouraging” the unemployed to get back to work by stopping all their benefits. Surgeons have always refused to operate if a patients weight or smoking habits would put the patient at risk during surgery. However, now it seems like doctors are judging peoples lifestyles – if they don’t approve they won’t operate. That gives them far to much power.
@Stevan Rose
“Nevertheless by quoting two substantial but actually unrelated numbers side by side there is a clear intention to mislead the reader into believing deaths are 1000 times higher than they actually are.”
The numbers are not “side by side” – there is a quite lengthy sentence between them.
The most prevalent eating disorder is binge eating, which often leads to obesity and the conditions related to it.
Many NHS Trusts have, at least until very recently, had no pathway for diagnosis of binge eating disorder. No diagnosis means no effective treatment. Patients are recognised merely as obese and handed diet sheets. Because the underlying cause of their obesity is a psychological disorder, diets are unsuccessful or work only temporarily. The gold standard treatment is a type of cognitive behavioural therapy. Most trusts still do not have adequate specialist expertise to offer such treatment.
With bariatric surgery increasingly in vogue, many obese people are being referred for surgery. There is a significant and growing problem here. The screening process for bariatric surgery will often not pick up that some people who are obese have binge eating disorder. Consequently, they have gastric bands fitted. Naturally, those individuals still have a psychological issue post surgery, and may still have the urge to binge even though the ability to do so has been taken away. You don’t have to be a medical practitioner to see the difficulties that can then arise.
In my opinion, a significant number of people are being referred for surgery when they should be referred for cognitive behavioural therapy.
The action of the North Devon Trust is reprehensible unless they are offering appropriate psychological therapies as well as the usual dietetic services and bariatric surgery. Somehow, I rather doubt that they will be to the fore in diagnosing binge eating disorder. Maybe a few well directed FoI requests are needed?
@Philip Rolle
I am glad you raised this issue of binge eating. It is yet another problem I have found myself facing with the NHS.
I have been diagnosed with
Major Depressive disorder
Complex- PTSD
Secondary Anxiety Disorders
As part of my psychological Disorders, I binge eat as way of distraction to hide away from emotional pain.
I have a BMI of over 35, high blood pressure, Ulcerated Colitis.
I sort the help from my GP as I really wanted to address my weight issue which are aggravating my others illnesses.
Because of my size, I had to be referred to the obesity dietitian.
I went through all the process of blood tests etc which the GP has to do before completing the referral, only to be told that I could not be referred because my mental health was “unstable”
I mean how ridiculous, what a ridiculous criterion. Of course most people who are severely over weight are mentally unstable, The reason why most people who are severely over weight is that the have underlying mental health issues. so to be told that I can not be referred because of my depressive disorders seems like madness.
Don’t even get me started on CBT, CAT and EMDR therapy within the NHS, I have had them all and they have all been a disaster within the NHS and left me in a worse place than before I started.
The problem with the mental health access teams in the NHS is they have a one cap fits all approach to therapy.
That in my opinion simply does not work, People are individuals and have different and sometimes complex needs which requires a different approach to therapy.
All this extra money that is being promised to NHS mental health will mean squat if fundamental changes are not made to the way that mental health services and talking therapies are delivered.
Patients needed to be treated as an individual with a treatment plan that meets their needs, rather than being treated as someone who falls into a certain “group” and will only receive xyz regardless of whether that approach is adequate or even appropriate for their needs
Matt, “One cap fits all”. I think also it has been very difficult to dispel the “We know best” syndrome from some professional elements in the NHS. These days I have an extraordinary GP who has such a fine sense of people-centredness in his approach, and what might have been called a great “bedside manner”. But I remember only too well issues for members of my family where they were not encouraged to give their views on what was happening to them, and were told very firmly that they were wrong in their ideas, only often to be proved correct later! We have had considerable mental health issues in our family, and I sympathise with your issues, Matt, greatly. While I welcome Norman Lamb’s vocal commitment to mental health, I think he needs to do more to acknowledge 1 The issues you highlight with appropriate treatment for each individual, and interaction between “mental” an “physical” aspects, and 2) The cuts enabled by the Lib Dems which have adversely affected mental health.
As an aside, I have just watched Clegg’s performance, and although I support his tardy moving away from the Tory cuts, the approach is massively timid for all the problems and inequalities in society, and he willfind it super-difficult to dissociate himself from cuts he has already overseen.
Tim13
Your last sentence of your last comment hits the target. For the first time since Rochester, he comes out of hiding to face a serious media interview and as you say it was a “ready moving away from Tory cuts”. What happened to the words “complete and utter nonsense”?
Matt – you write so well. I hope you feel strong enough to write more about this.
@Ruth Bright
Thank you very much for your comments.
I am actually in the process of trying to write about my experiences, It is a very long and drawn out process as I can only manage small bits at a time.
My private therapist has been encouraging me to write about my experiences as an abuse victim over a 12 year period, but also to write about the complete lack of support that I have had from Mental health services over the last 20 years and how instead I had to rely on costly private treatment.
I am also writing about my experiences within the NHS on CBT, CAT and EMDR and why I think the approach is wrong.
The NHS in my experience can be very bullying when it comes to therapy, Due to limited resources and high demand on services they want you to reveal as much detail about your past as quickly as possible, before you feel ready, able and safe to do so.
All therapy should have at least a 4 stage approach,
1) Creating a relationship between the therapist / patient to see if a working relationship is viable {Not all Therapists are suited to some patients and Vice Versa} That’s just human nature, You have to be able to feel at ease with one another for the therapy to work
2) Once (1) is established, stage 2 should focus on grounding techniques, Teaching a patient calming methods and to create a safe space for when things become emotionally traumatic {therapy can make things worse before they become better}
3) Working on the causes of the depressive disorders, traumatic memories, triggers, behaviors,recognizing how past events are effecting your behaviors and reactions now to life events.
4) Re-balancing negative thoughts and behaviors, recognizing strengths and weaknesses , learning new techniques to combat and redirect negative / intrusive thoughts and behaviors.
In my opinion unless therapy follows this kind of 4 stage approach to therapy, it is unlikely to work. Each stage of therapy takes a number of weeks to establish the goals. It is a slow and drawn out process.
The NHS process is to cram all this in into 12 sessions. Only allocating the first 2 sessions to stage (1)
Ask yourself do you really think anyone who has been through traumatic life events who will have been left scarred and vulnerable and mistrusting of people can really achieve a trusting working relationship with a complete stranger in such a short period of time.
I have been for therapy on the NHS {EMDR} where the therapist tried to skip steps 1 & 2 Completely as it was thought because I have had so much private therapy over the years, I should be able to bring any progress from those sessions straight into these NHS funded sessions. I was told that I should be able to progress quickly.
I felt bullied and pressurized into revealing details before any relationship was established and any trust had been established between myself, the clinician and the environment where the therapy was taking place.
The process ended up being very damaging to me and it was decided that it was no longer feasible or safe for me to continue.
I have totally given up on treatment within the NHS, because the way therapy is rushed and applied simply does not work for me and it leaves me feeling worse than before I started.
I pay for my own treatment privately. It works for me as I feel the therapy is on a more equal footing, I have more control and I do not feel pressurized. I do have control issues (but then anyone who has been a victim of abuse would) I felt dominated in the NHS and as though I had no say in what was happening to me (which of course triggers bad memories for me)
Although I do not want anything more to do with NHS mental Health Services and am happy to seek my treatment privately {whilst I can} I do want a better NHS mental health services for other, especially young adults and children whose life can be totally derailed by long term mental health problems and abuse.
It is no Good the Government throwing more money at mental health unless it makes fundamental changes to the way in which talking therapies are delivered. The services needs to be delivered in an appropriate format where patients and patients needs are met on an individual basis rather than be treated in a framework where 1 cap fits all approach to treatment.
matt, it is useful for us to hear your experiences, thanks for sharing them. I agree with you about the one size fits all problem. When I had CBT it consisted of three sessions of someone trying to pigeon hole me into a box and me not wanting to go into it and then me not turning up to the fourth session – as you say, people need to be treated as individuals and not angled towards certain boxes.
I also remember the worry about being given a label made me not want to go for ages. In fact, I only really went because friends wanted me to go, but whilst some find the idea of receiving a label reassuring, others dread the idea of it. I remember trying to get a guarantee that I wouldn’t be given a label, but not sure I could get it. I never got a label anyway.
My problems have been fairly mild, but enough to hurt myself and others.
@Eddie Sammon
I understand everyone is different and some people do not like labels.
Personally I like things to have a name, because knowing what something is helps me to understand more and come to terms with certain things.
For example, one of my secondary anxiety disorders is hypervigilance. For years I suffered these symptoms and had no idea what they were or what they meant. I thought I was going crazy and my brain was screwed and there must be something abnormal going on, it was very frightening.
Whenever I do have to venture outside, I become so focused on what is happening a hundred meters down the road, trying to perceive threats before they happen and being so paranoid about not being able to see what is going on behind me. With all that going on, I am sometimes not aware of my “immediate surroundings” This can create problems like walking out onto roads unaware when something has triggered flight mode, walking into objects, I have even had a car park barrier come down on my head in a hospital car park as I was more focused on identifying people meters away from me rather than being present in there “here and now” so to speak.
If I try and focus on the here and now and present surroundings, I get panicky and feel vulnerable and exposed. It’s a catch 22 situation.
Anyway, I went many years with all this going on and not having a name for it or any understanding and thinking I was abnormal. When I did get a name for it, for me personally it makes it easier to accept it. It does not make the symptoms go away, but at least I know it is a condition and I am not abnormal.
Hope that makes sense.
But everyone is different and I understand some people do not like labels at all. It’s an individual thing.
Thanks for sharing your comments though, I think it is important that people discuss these issues
Thanks matt, I always learn from your comments! Yeah I suppose the label, or the diagnosis, is an individual thing, I just wanted the choice of whether to accept it or not. There is a lot of opinion mixed in with the science.
Best of luck anyway, continue sharing your thoughts!