In this podcast Dr. Dasha Nicholls talks about eating and feeding disorders in children and young people. Raising awareness, Dasha aims to level the playing field; noting that the mortality rate is higher than that of diabetes and asthma. She highlights adolescence is an important time for early intervention.
Intro Speaker: This podcast is brought to you by The Association for Child and Adolescent Mental Health, ACAMH for short. You can find more podcasts and other resources on our website, www.ACAMH.org and follow us on social media by searching ACAMH.
Interviewer: Hello, welcome to the In Conversation podcast series for The Association of Child and Adolescent Mental Health or ACAMH for short. I’m Jo Carlowe, a freelance journalist with a specialism in a psychology. Today, I’m interviewing Dr. Dasha Nicholls, reader in child psychiatry at Imperial College London. Today, Dasha is going to talk about feeding and eating disorders in children and young people. Welcome, Dasha.
Dr. Dasha Nicholls: Thank you.
Interviewer: Thanks for joining me. Can you start by introducing yourself?
Dr. Dasha Nicholls: Well, as you said, I’m reader in child psychiatry. That means I’m a practising child and adolescent psychiatrist and I have moved. only in the last year to, Imperial College London, to an academic post. Previously, I ran the eating disorders part of the national feeding and eating disorder service at Great Ormond Street Hospital. So, I was primarily a clinician back then.
Interviewer: And what prompted your particular interest in eating disorders?
Dr. Dasha Nicholls: So, I started my child and adolescent training. which in those days, was as a senior registrar. I’m giving my age away there, at Great Ormond Street, on the rotation and my first job was with the late Bryan Lask. He was my clinical supervisor on the Mildred Creak Unit and there was a one day a week outpatient clinic that was associated with that. So, that was my first child and adolsecent training placement and Bryan was a great figure and a pioneer in the field of child and adolescent eating disorders. So, he exposed me not only to really interesting clinical work but also research and the international eating disorders community. It was as a result of one of those research meetings that I then became fully embedded in the field.
Interviewer: Just going to basics, really. Feeding and eating disorders encompass a range of conditions. Anorexia nervosa, bulimia nervosa, binge eating disorder, other specific feeding or eating disorder and avoid restrictive food intake disorder. Can you give a brief overview or definition, really of the more common disorders that come under that umbrella?
Dr. Dasha Nicholls: Absolutely. So, it depends as ever, whether you’re a lumper or a splitter. So, some people think actually, some of these subdivisions between types of eating disorders are unnecessary because there’s so much overlap in the symptoms between them. So, if you’re if you’re a lumper, if you think that all eating disorders essentially have the same behaviours and characteristics associated with them, then the key disordered eating behaviours we’re looking at, usually are restricted eating behaviour, binge eating behaviour, purging. So, that’s getting rid of calories and importantly, the cognitions, the beliefs are all to do with expectations around the value of weight and shape in somebody’s self-evaluation in their preoccupation, what they think is important in the world and to the point that it is beginning to impair function in some way. So, all eating disorders fall into that broad definition and the only difference between anorexia and bulimia nervosa, binge eating disorder and the other subtypes is the relative proportions of those symptoms. So, for anorexia nervosa, restrictive eating overrides all others and gets people to the point where they’re physically compromised as a result of starvation. They may or may not have binging and purging behaviour, depending on what subtype of anorexia nervosa it is.
But for medical reasons, I think primarily, weight loss sort of trumps all the other symptoms because there are things that you need to do when somebody is severely emaciated that are not necessarily in the normal way to avoid eating disorders. Bulimia nervosa was originally described as an ominous variant of anorexia nervosa and I think we still know that when the binge, purge features are present in anorexia nervosa, it does alter the prognosis a bit. Some would argue that that subtype of anorexia nervosa may be a better fit with bulimia nervosa. So, there seems to be a different prognostic pathway and an arguably, causal and developmental pathway for people who have a disorder that’s primarily driven by episodes of overeating associated with a loss of control, overeating. Then because there’s massive concern about gaining weight, that that then leads, inevitably to the need to get rid of the calories from binging and that’s purging behaviour. That’s what defines both binge, purge subtype of anorexia and bulimia nervosa.
There’s another disorder that’s crept into the language in DSM-5, purging disorder where you have the purging behaviour, but not the binging behaviour. That’s actually remarkably common and then, binge eating disorder is binging without the purging. So, the range of and repertoire of behaviours is relatively limited, but depending on which symptom is dominant, determines which disorder you would be classified as. That’s all the eating disorders.
ARFID was a, I think, very sensible way of beginning to bring feeding and eating disorders together and to begin to understand the relationship between the two. But what distinguishes ARFID from the eating disorders is that ARFID, Avoidant Restrictive Food Intake Disorder is not defined by concerns or anxieties about weight and shape. It’s other types of anxieties that dry a volume restrictive food intake behaviour. So, for example, if somebody had a fear of choking or if they were being sick and it led to restrictive eating behaviour, they can get just as sick as people with anorexia nervosa, but it’s not to do with beliefs about weight and shape.
There’s then one last category, which I’ll just mention because I think, at the moment, it’s a bit uncertain. There’s a group who have what’s broadly known as non-fat phobic anorexia nervosa, and I think the jury’s out, really, about whether that is anorexia nervosa. But for various cultural developmental or other reasons, the cognitions are differently articulated or whether it’s better understood as a type of ARFID.
Interviewer: What is the prevalence of eating disorders amongst children and young people in the UK?
Dr. Dasha Nicholls: Well, in their recently published national prevalence survey, the figure was actually surprisingly low. It was only about 0.4%, overall and slightly higher in adolescents, 0.6% and then in 16 to 18 year olds, 0.8%. That’s much lower than we would normally understand the prevalency of eating disorders to be. A reasonable estimate is probably somewhere between 5% to 10%.
Interviewer: I think most of us think of eating disorders as something that starts in adolescence, but would there be some manifestation of an eating disorder earlier in childhood?
Dr. Dasha Nicholls: If you talk to parents, most parents will say that there was nothing, at all, evident from their child’s development that they would have picked out as being unusual. It’s only really in retrospect that they’re able to recognise some of the traits that we would commonly associate with being at high risk, particularly of anorexia nervosa, which might look like actually having been so, so perfect, so keen, so compliant that actually, they would never come across anyone’s radar as having caused any concerns or problem. It is only when you look back that you might think actually, maybe what that was a manifestation of, was a degree of uncertainty about how to be and what to be and therefore, being very compliant and good and wanting to be what everybody else wanted them to be.
There is some association between a tendency for picky eating, fussy eating and some of those more heightened sensory awareness. This is specifically with anorexia nervosa, not with other types of disordered eating behaviour or bulimia nervosa. Actually, the tendency there tends to be more for disinhibited eating, for overeating and the association with lower self-esteem can be more manifest. That’s a more robust finding with bulimia nervosa. With anorexia nervosa, actually, people often have quite high self-esteem and, in retrospect, but perhaps, associated with the trait anxiety, a wish to please. So, it’s a bit of a mixed picture.
Interviewer: So, what are the physical and behavioural signs to alert parents and teachers and health professionals?
Dr. Dasha Nicholls: So, first thing I would say is weight change is often quite a late manifestation. That the first things you’d start to notice is a change in eating behaviour, of one kind or another. For anorexia nervosa, that might look like increased rigidity around eating. It might look like being much more selective about the types of foods or the times a day of eating, starting to put rules in about how eating should look. What’s happening cognitively will determine what the rules are. So, common thing would be I can’t eat my Easter eggs and that might be the first sign that there’s a sort of rule that somebody’s developed in quite a black-and-white way about all chocolate is bad or all fat is bad. Those increased rigidity and restricted eating practices don’t start to look like weight loss until often, a bit further down the line.
For bulimia nervosa, that tendency to over eat, it’s quite common for young people to find it difficult to stop eating in the presence of nice, desirable foods. Kid in a sweet shop being the typical analogy. What changes in bulimia nervosa is that that starts to become shameful behaviour, in some way. That they start to feel that it’s wrong to have overeaten and start to feel guilty about having overeaten. So, if you imagine a child at a party or at a buffet who’s had a lot of cake, what you might then start to see is that their eating of that cake becomes more secretive because they start to feel a bit more ashamed about having eaten as much as they wanted to. And, or that there starts to be secretive behaviour about the need to get rid of that cake in some way.
But the core feature of binge eating behaviour is that feeling that they can’t stop and it’s not until you develop some capacity for self-reflection and a wish for self-regulation, that you start to recognise that maybe you’ve gone too far. So, usually younger children don’t care if they’ve done too much. It’s not until you start to get into your teenage years and develop some of that reflective capacity, that you can start to see and think about consequences of that behaviour. That’s when you can start getting into that cycle of overeating and then feeling guilty and shameful about having done so and then feeling you should do something to compensate for it to maintain a particular body weight and shape.
Interviewer: And what about physical signs? That might be a little bit further down the line.
Dr. Dasha Nicholls: Yes. So, again, I’m sticking here, largely with anorexia nervosa and bulimia nervosa, but for anorexia nervosa, often people can have lost quite a bit of weight before people really start to become concerned. Often, afraid to say, people are very complimentary, praising, lots of positive reward and feedback. Isn’t it treat? Particularly, if they’ve been a little bit overweight. For bulimia nervosa, sadly, it’s often a lot longer before it becomes revealed because that sort of secretiveness. It’s not until a parent starts to think why does she start to go to the toilet after every meal? Or noticing large quantities of food going missing, that you might begin to pick up. So, it’s often young people, themselves coming forward and saying actually, I’m struggling with my eating. But that can take, on average, five years before somebody begins to recognise that their eating behaviour is such a problem that it’s out of their control.
Interviewer: And what impact do eating disorders have on a young person, on their mental health, their education, their relationships and their general quality of life?
Dr. Dasha Nicholls: Obviously, as I think I’ve said, we wouldn’t diagnose an eating disorder until it was having a significant impact, by definition because a lot of the behaviours and the thoughts that I’m describing are actually very common in the normal population. So, it’s not until it’s starting to take over their mind and impact their behaviour and their functioning, that we would actually say that it met diagnostic threshold. The sorts of things that might look like are being unable to concentrate because your mind is full of thoughts and feelings about either yourself, negative feelings about yourself or about food and eating. That’s particularly true if somebody is in a state of starvation because we know from, most notably the Minnesota semi-starvation studies, is that if any of us restrict our food to a significant degree, our minds will become filled with food. So, that impairment in functioning starts to affect your ability to concentrate on schoolwork, certainly takes you away from your friendships. Stop being able to eat with your friends, stop being able to go out for social events. These are common early manifestations, is a sort of withdrawal from your social world and the more isolated you become, that, it in itself, feeds the eating disorder because there’s more time for your mind to be filled with, you aren’t surrounded with usual distractions that might take you off into a healthier place.
Interviewer: And does it start to impact the whole family?
Dr. Dasha Nicholls: Absolutely, depending on its manifestation. Usually, there’s a phase where parents and young people are walking on eggshells around the younger person because they can see something’s wrong, but they’re worried about challenging it because they’re worried it might make it worse. And of course, once you do challenge somebody’s behaviour and say actually, I’m getting quite worried about you now, you can’t necessarily expect that there’s going to be a positive oh, thank you for helping me, type of reaction to that.
Interviewer: So, how are children and young people with eating disorders identified? How is a diagnosis actually made?
Dr. Dasha Nicholls: To make a diagnosis, we need a combination of physical health measurements. We need to know whether somebody is the right weight for their height, not fitting some ideal, but just whether their body is showing signs of health or not because that’s one of the manifestations of impact. If somebody’s health is impacted to the point where their blood tests are abnormal, where their periods have stopped, where they’re starting to show signs of starvation syndrome or they’ve got other manifestations or complications from purging behaviour. So, physical health assessment is necessary.
Secondly, we would try particularly, with children and young people, to get third-party report. So, often parents and siblings will notice things about behaviour and report things that young people may not even themselves, be aware of. Schools often are not aware of what’s happening. So, parents and close people who would expect to see somebody at meal times are most likely to notice changes in eating behaviour and most likely, in hindsight, to be able to recognise patterns and things that may have been happening that would have been important in the development of the eating disorder. But self-report is core to it because it’s only a young person, themselves who can really let you know what their thoughts and feelings are, that are associated with their eating behaviour and their beliefs about themselves and their weight, their shape.
Interviewer: That initial referral, then. Is that through CAMHS or through…?
Dr. Dasha Nicholls: So, since the government has invested in specialist eating disorder services across England, we are now in a system where referrals come direct to special services from GP’s. In a lot of places, and the hope is that all places will eventually accept self-referral as well and referral direct from schools because we’re trying to do everything we can to remove the barriers to accessing specialist care. With restrictive eating disorders, in other words, anorexia and ARFID, it’s usually parents that trigger the referral. With the more hidden disorders, binge eating and bulimia nervosa, it’s often the young person, themselves, but usually after a bit more of a lag in time. So, they’re more likely to have remained hidden for longer and therefore, to present a bit later, older adolescence.
Interviewer: And once that young person is identified as having an eating disorder, what then kicks in in terms of support and interventions?
Dr. Dasha Nicholls: So the mainstay of treatment for children and young people with eating disorders are involve parents, involve families, whole families, if that’s going to work. Certainly parents, in the majority of cases, unless there’s any exceptional reason why not. The simple reason is that, with that level of support, the response to treatment is usually quicker. So, it is possible to treat eating disorders with an individual approach. But actually, the response is quicker and more effective and more enduring if it’s done with full family support. So, family-based treatments, based on family therapy principles, but with a specific focus on the disordered eating behaviour as the target symptoms are the mainstay of treatment for anorexia nervosa and bulimia nervosa, becoming so for ARFID too. Although, there again, you’ve got to be specific about the behaviour that you’re targeting and it is different in ARFID from anorexia and bulimia.
Binge eating disorder, I would say we’re still in our infancy in terms of knowing what the most effective evidence-based treatments are likely to be. There are some people for whom family-based treatment is not enough and the choices then become do we do a more intensive form of treatment such as a day patient program or multifamily therapy type program, or do we move them to an individual approach? In which case, we would be using either a psychotherapy or CBT type model.
Interviewer: And the prognosis if a person is identified and treated in a timely fashion?
Dr. Dasha Nicholls: It depends who you talk to. The trials evidence suggests that about 40% respond to first-line treatments. If you take a slightly less stringent view of what remission or recovery looks like, it’s as high as 70% for early intervention using a family model with appropriate degrees of tailoring for intensity of treatment. By which, I mean if there’s a need for a brief hospitalisation to medically stabilise or for a period of multifamily therapy in the course of that, then we would expect somewhere between 70% and 80% of adolescents to respond to treatment. Meaning that there’s a proportion who will go on to have a longer-standing illness that endures into adulthood.
Interviewer: Dasha, there were two recent reports, one from the charity Beat and the other from the cross-party Public Administration and Constitutional Affairs Committee, recently. They recently warned that lives were being lost due to the failure of NHS England to provide care for people with eating disorders, and I just wondered how bad that failing is, in your view?
Dr. Dasha Nicholls: Yeah. So both, I think were prompted by the PHSO, for short, report into the death of Averil Hart, who died at the age of 19, tragically, far too young and there were a number of other deaths that were mentioned in that report. But the report was a result of extensive investigation into the factors that may have contributed to her death, over and above the fact that she had a very severe disorder for which we know that we don’t have cures, in all cases. So, I don’t think any of us pretend that we have yet got the answer that prevents everybody dying from anorexia nervosa. But what we do hope is that, as a result of these reports, that some of the professional and service factors that have contributed to her death will be addressed, so that it doesn’t happen. They largely consist of issues to do with individual responses to an understanding of the needs of people with eating disorders.
So, in Averil’s case, that includes the primary care team, the university medical health care system, the acute medical hospital to which she presented once she was found collapsed. Then, the management of her in the acute medical setting but also, the specialist who was treating her and whether the warning signs were recognised early enough. So, there’s individual recognition and that’s one of the recommendations is about training for people in the recognition and management of various aspects of eating disorders. Obviously, appropriate to their role in their setting. The other issue is to do with coordination of care, about whose responsibility is what, at what point and to recognise that in severe eating disorders, there are going to be all these services involved and that all of those people need to know how to talk to each other. What their expectations are, what their roles and responsibilities are and that that’s clear across the system.
So, there’s a combination of those individual training needs and awareness and the service level preparedness for this sort of emergency. So, if you think about a commoner medical emergency like diabetic ketoacidosis, for example, or severe asthma. Everybody knows what the response to that should look like and this is really a call to say everybody should know what to do when somebody turns up at A&E in severe starvation.
Interviewer: I wanted to ask you about the causes of eating disorders. I’ve got a feeling that’s a huge…
Dr. Dasha Nicholls: That is such a great question. I’m going to summarise. We’ve moved on from families are to blame, thankfully and now, we understand families as being an important resource and support and integral, as you’ve heard, from children and young people, to providing care and support and indeed, treatment for young people. We have moved on, strides in terms of understanding the genetic factors and the, what I would call, broadly speaking, the neuroscience in terms of understanding.
So, I’ll give you an everyday example. A lot of us go on diets from time to time. Most of us, after a couple of weeks are, okay. There’s a limit to how long I can keep this up, kicks in and that’s a normal response to starvation. But what seems to happen in people who are vulnerable, is that it’s a different response to starvation. That it somehow triggers a rewarding system rather than a punitive system in parts of brain circuitry. So, there do seem to be some evidence of aberrant reward systems in response to starvation, specifically. That then, has a knock-on effect on their emotion processing, on cognitive rigidity, cognitive ability, the ability, to set shift. All of these things are associated with starvation syndrome, but for some people, if you have a predisposing mindset that is more easily triggered into that, then starvation seems to have a different sort of response.
Interviewer: You’re involved with a lot of research projects, including research into parent interventions for childhood obesity. Can you say a little about that particular one?
Dr. Dasha Nicholls: Yes. So, my clinical work has been primarily about eating disorders and primarily about anorexia nervosa, specifically because the service that I ran specialised in particular, young patients with eating disorders. So the obesity work is mainly at a research level and we ran a randomised controlled trial a number of years back, with Jane Wardle’s group because we were trying to see if we could get similar findings from the American studies at the time, showing the effectiveness of beavioural interventions, in a real-world NHS setting. With many clinical trials in obesity, we found no difference between the arms in R2, two-arm RCT. That’s true. There’s numerous obesity interventions that have been trialled. Certainly, in our study and I think in others, that’s not because the interventions aren’t effective but because for all, all interventions are effective for some people. So, there were the control arm response as well as the intervention arm. And so, what I’ve been doing recently is trying to unpick who responds to what because what we need to start to do is to personalise our interventions and say okay, obesity isn’t a single thing. Unlike anorexia nervosa where you’ve got highly defined phenotype and cognitions and behaviours, that it’s not justified by weight. Obesity is just defined by weight and within obesity, you’re going to have people who have got binge eating disorder. You’re going to have people who’ve got ADHD, you’re going to have other people who’ve got severe trauma, abuse and neglect. You’re going to have people where their obesity is primarily driven by socioeconomic factors and so on. So, it’s actually a cluster and so, to expect all to respond to a single intervention is, I think, unrealistic.
So, that’s where I think that research needs to go, is to begin to A, subdefine obesity into different, more pragmatically useful subcategories, but also, to begin to say, what are the core characteristics that determine whether somebody will respond to any intervention? In which case, the lowest level intervention, the lowest cost intervention is a sensible one to offer or where people need more sophisticated psychological interventions, which are more resource intensive but where they may benefit more. So, that’s a subanalysis that I’m doing at the moment on that controlled data. The other thing I’m very interested in obesity in relation to is the relationship with eating disorders. So, so some people talk about obesity as if it is an eating disorder. It’s not technically defined as one but it is a both a risk factor for an eating disorder and comorbid with eating disorders.
So, obesity is very commonly associated, not always, commonly associated with poor body image, is associated with dieting behaviour, which is what tips people into an eating disorder. And a proportion of people who are obese or overweight have binge eating disordere or loss of control, eating. So, beginning to recognise the associations between those and recognise that, for example, one of the reasons we might be seeing more eating disorders is because we’re seeing more obesity.
Interviewer: Right. Dasha, if, within a family, there’s a history of eating disorders, is there a risk of intergenerational transmission? Are the children at greater risk?
Dr. Dasha Nicholls: I don’t think there’s many disorders in life where there isn’t a degree of heritability and that’s true for most mental illnesses. It’s certainly true for eating disorders. The heritability is complex though, because it’s not straight, you’ve had anorexia and therefore, somebody else is going to have anorexia nervosa. It’s a combination of what we might call the metabolic risk. So, that might look like parental or familial BMI weight, it might look like appetite and eating behaviour. It might look like sensory factors and avoidance of, fussy picky eating and then there’s the more psychiatric, psychological risks. So, that might look like perfectionism. It might look like anxiety, obsessional behaviour. It might look like autistic traits. Those things or a combination of those things. The heritability is complex and it includes a combination of the metabolic and the psychological, psychiatric risk factors, including emotion regulation. Figures range from between 40% and 70%, depending on how it’s been measured and which study look at in terms of heritability.
Interviewer: Right. It’s quite high.
Dr. Dasha Nicholls: It is. Yes, it is absolutely, high, which is why we say that the fact is we can’t blame social media for eating disorders. It’s a complex matrix of biological, psychological and social but like with everything. If you know that you’ve got a higher heritability, a higher risk of cancer, for example, or heart disease, then that potentially puts you in a position of being able to say, okay. What can I do to mitigate that risk? What can I do to make sure that that I lower my own risk, even though I know I carry that increased risk? So, that then, means starting to look at things that we know about about eating disorders prevention. What do we know, helps?
Interviewer: And what does?
Dr. Dasha Nicholls: Well, the key things that we know and what we target with eating disorder prevention are confident body image and the other aspects are to do with emotion regulation and the ability to value yourself and your self-esteem and confidence. Not being all based around your body and your body image.
Interviewer: Where would a teenager go to get that advice, unless it had already become a problem?
Dr. Dasha Nicholls: It’s a good question. We have got some areas where we’re doing good in the country, where we’re doing good eating disorders prevention work, but I would say that at the moment, it’s not consistent and the messages we’re getting out there. There’s no doubt… I think I’ve under emphasised the importance of emotional resilience as a protective factor for all mental health problems and that applies to eating disorders as well. Some schools are very good on offering that sort of resilience support. But at the moment, I would say that eating sort of prevention is not being rolled out systematically across the country.
Interviewer: Dasha, finally, do you have a takeaway message for anybody listening?
Dr. Dasha Nicholls: I think the takeaway message generally, is that eating disorders are not to be trivialised. I think it is very easy to brush disordered eating behaviour off in a, it’s just a fad. It’s not significant. It’s not real mental illness. Everybody does it and therefore, it’s normal and even glamorized, if you read any of the women’s magazines. How we begin to level the playing field in terms of them being understood and people learning about them, it’s more common than psychosis and yet there’s nobody in pyschiatry who doesn’t know how to deal with psychosis. The mortality is higher than diabetes and asthma but there’s no doctor who isn’t trained to deal with diabetes and asthma. So, I think we just need to start taking it a bit more seriously, up there with addictive disorders in terms of the potential for harm and poor prognosis if it’s not caught early. So, that’s, I think, the main take-home message is that adolescence is the key time for early intervention.
Interviewer: Brilliant. Thank you, Dasha. For more information on Dr. Dasha Nicholls and her work on eating disorders, visit the ACAMH website, www.ACAMH.org and Twitter at ACAMH. ACAMH is spelt A-C-A-M-H.
Close: This podcast was brought to you by The Association for Child and Adolescent Mental Health, ACAMH for short
Dr. Dasha Nicholls
Dasha is a Reader in Child Psychiatry at Imperial College London and Honorary Consultant Child and Adolescent Psychiatrist at Central and North West London NHS Trust and East London NHS Trust. Her research and clinical work is concerned with feeding and eating disorders in children and adolescents, including early onset eating disorders, avoidant restrictive food intake disorders, and child and adolescent obesity. Until moving to Imperial in 2018 she was Joint Head of the Feeding and Eating Disorders service at Great Ormond Street Hospital, where she led the national eating disorders team, and Honorary Senior Lecturer at the UCL Great Ormond Street Institute of Child Health. (Bio via NHS Foundation Trust)