The costs of eating disorders - Social, health and economic impacts
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The costs of
eating disorders
Social, health and
economic impacts
Assessing the impact of
eating disorders across the
UK on behalf of BEAT.
February 2015
Foreword 4
Contents
Introduction 6
Executive Summary 7
Context 10
What are eating disorders? 12
Prevalence 20
Seeking help and diagnosis 24
Treatment 30
Outcomes and Impacts 36
So what? 44
Appendix 1 Research Approach 49
Appendix 2 Online Survey 52
Appendix 3 ICD-10 Classification of Eating Disorders 73
Appendix 4 SCOFF Screening Test 74
The Costs of Eating Disorders. Social, Health and Economic Impacts 3
Foreword
Beat has worked for 25 years to raise • There is world class research This early intervention is difficult given
awareness about eating disorders; underway into causes and the the pernicious nature of the disorder.
to support those individuals who are effective treatments, with the UK Once a sufferer believes there is a
affected and their families; and to being in the lead in many cases. problem they do not naturally reach
campaign for improved treatment. for help. Shame, fear and concern for
• There are dedicated clinicians,
We are therefore fully aware of what others can prevent them from seeking
therapists, doctors and nurses,
the true cost is to the lives that are the help they need.
psychiatrists, dieticians and others
damaged and lost.
who bring their skills to this “I couldn’t tell my parents,
Eating disorders are a serious mental specialist field.
illness and have the highest mortality I knew how much it would
And yet, this report shows so
rate of any mental illness claiming
powerfully that eating disorders
worry them if they thought
precious, promising lives every year.
remain complex, costly and I was ill” said a caller to our
Families get overwhelmed, desperate
and broken by the challenge of beating
challenging illnesses. Treatment is helpline.
patchy at best, inadequate at worst and
an eating disorder.
that unacceptable variability nationally A unique feature of an eating disorder
We also know that they are treatable is putting lives at risk every day. is that the person affected may truly
conditions and that full recovery is and genuinely believe there is nothing
Beat commissioned PwC to produce
possible if intervention is early enough. wrong with them. The illness itself
this report, and gratefully acknowledge
No-one need die of an eating disorder. distorts their thinking and ability to
the donation from N Brown Group
Sufferers can recover and lead healthy, judge. They are not lying, manipulative
PLC that funded it. The report assesses
happy lives again – ready to fulfil their and deceitful, but fearful, ashamed and
the incidence and cost to society of
potential – able to shine. self-loathing.
this debilitating condition including
Our Young Ambassadors, all under 25 treatment and wider social costs too. “I don’t deserve the pleasure
years old, have all recovered from their
eating disorder and are outstanding
In addition to bringing their I know food would give me”
unparalleled analytical skills to bear,
examples of this. As they speak out
PwC also conducted a substantial
was another chilling insight
about their recovery, others feel
interview programme in which people shared.
more able to take up that long path to
contributed their personal experience,
recovery too. Families who hear them
both as sufferers and carers. This
gain encouragement and hope for their
survey has provided such rich data
own loved ones, and decision makers
with which to illustrate the issues
are reminded why the services they
involved.
plan and fund are so important.
The identified cost to society of eating
Much has changed for the better during
disorders is shocking. It also indicates
our 25 year history.
that early intervention could avoid
• There is more accurate and much of this cost and the associated
compassionate reporting of eating pain to sufferers and carers – the
disorders in the media. It is no sooner someone gets the help and
longer just seen as silly girls on treatment they need, the better their
sillier diets. chances of making a full recovery.
4 The Costs of Eating Disorders. Social, Health and Economic Impacts
There are so many people who could • Schools, Colleges and Universities
and – indeed many who should – be need to have eating disorders on
able to understand, to act and to get the their agenda, for staff, for the
help that people with eating disorders curriculum and for pastoral care.
desperately need. Teachers, Doctors,
• And most crucial of all, Mental
Nurses, Sports Coaches, Dance
Health Services need to be joined
Teachers, Gym Instructors, Personal
up, comprehensive and responsive.
Trainers, Girl Guide Leaders and
The current pattern of fragmented
families themselves… the list goes on.
provision with its silos of expertise
But they too need assistance in terms
concentrated in the in-patient Chris Outram
of being able to recognise the condition
treatment services so few people Chairman Beat
and then knowing how to help those
can access is no longer fit for
affected.
purpose.
Those showing concern and
PwC estimate that the cost to society of
compassion cannot make it worse, but
eating disorders is circa £15 billion per
can make the difference to someone
annum. They also indicate that early
being able to seek help. Everyone who
intervention can pay massive dividends
has recovered says something along the
given the high relapse rates.
lines of thank goodness people didn’t
give up, didn’t stop trying to reach out, The latest Government initiative to
cared enough to drag them – literally focus on eating disorders and self-
sometimes – out of the deep dark pit of harming is to be applauded, but given
their illness. the scale of the problem, our journey
to eradicate – or at least massively
Beat will do all we can to make sure
decrease – the incidence of Eating
that the window of opportunity – Susan Ringwood
Disorders has only just started.
the chance to notice, speak up and Chief Executive Beat
act – is taken full advantage of. We Plans to do more in schools and
will provide information and advice primary care are urgently needed and
to those who need it so that they can Beat is ready to work with Government
reach out and be able to do the best for to define and implement such high
their loved ones. impact programmes.
But that won’t be enough unless the Their impact will be hugely value
Government also acts to guarantee that creating at both the societal and
window of opportunity remains open individual levels.
wide.
There is much to be done on so many
fronts;
• GPs and Practice Nurses need to all
be up to date and up to speed on the
need for early diagnosis and access
to treatment. “Wait and see” can be
a death sentence for some.
The Costs of Eating Disorders. Social, Health and Economic Impacts 5
Introduction
This report that Beat have their lifetime. Early intervention
commissioned from PwC is most is essential in order to prevent the
welcome, and timely. The need to neuroprogression which causes these
provide comprehensive access to illnesses to become entrenched.
effective, evidence based treatment Families play a huge role in managing
is growing. Resources are finite, and the illness and whenever possible they Professor Janet Treasure OBE
a strong case needs to be made for should be included and informed about PhD FRCP FRCPsych,
investment in this most challenging of how to help. Their role as part of the Director of Eating Disorders Unit and
illnesses. treatment team whatever the stage of Professor of Psychiatry at Kings College
illness should be respected. London, Chief Medical Advisor, Beat.
The health, social and economic data
together with the survey findings from The inclusion of the impact on families
sufferers and their carers which make and carers within this report is
up the substance of this report all particularly welcome. The need for
amplify what I have seen in my 30+ more accurate information to help with
years of clinical and research practice. their care giving role is a common call
from carers, no matter what the stage
It is particularly resonant that PwC’s
of illness. A helpful aphorism is that
survey shows that the speed at which
families are the solution and not the
help is sought and provided are
problem. The burden on care givers
important factors that determine
needs to be considered particularly as
the response to treatment, with my
they are now expected to contribute
experience showing that younger
to symptom management in the early
people respond more favourably as do
phase of the illness. Helping the carer
those who receive treatment quickly.
to understand and cope with the illness
The picture presented by PwC of is essential.
a cycle of treatment, recovery and
The symptoms are pervasive and
relapse also resonates. The clinical
intrusive into family life. Their life
picture in the later stages of illness
threatening nature contrasts with
becomes more complex with more
the individual’s own unwillingness to
comorbidities. The illness becomes
accept their illness. Carers themselves
entrenched and the response to first
have their own practical and
line treatments reduces. This interrupts
emotional reaction to the illness. In my
the usual developmental milestones
experience of adult services, carers can
and so further education and transition
be excluded from treatment and liaison
to independence is impeded – which is
with families is often difficult as people
a big concern.
may be admitted to units distant from
Over time, untreated, eating disorders their home.
may become entrenched with more
The key message from this report
profound physical and psychiatric
for me is the need to get the right
co-morbidity. Neuroprogressive
treatment and help quickly if we are to
changes occur as an adaptation to
improve the outcomes for individuals
prolonged starvation and/or abnormal
suffering from eating disorders and
eating behaviours. These can make
their carers and families. There remain
the cognitive, social and emotional
many unknowns that must yet be
vulnerabilities more pronounced. Many
addressed, but the need for urgent
such patients can remain dependent
change is clear.
on their families or the state during
6 The Costs of Eating Disorders. Social, Health and Economic Impacts
Executive summary
Beat, the UK’s only nationwide Anorexia Nervosa and Bulimia Nervosa Our analysis indicates that many of
organisation supporting people as well as lesser known disorders such the established viewpoints about the
affected by eating disorders, as binge eating disorder. prevalence of eating disorders continue
commissioned PwC to conduct a to prevail namely that they affect more
programme of primary and secondary The Royal College of Psychiatrists women than men and typically emerge
research – including an electronic suggest that a combination of during teenage years although our
survey of 435 sufferers of a range of influencing factors (including analysis also shows that disorders often
eating disorders and 82 carers across genetics, age and social pressures) last well into adulthood.
the UK – to assess some of the key cause eating disorders and that
economic, health and social impacts they are often seen alongside Our respondents indicated that
attributable to such disorders. other conditions (most frequently symptoms of eating disorders are
depression or anxiety disorder). This first recognised under the age of 16
Based on our survey findings, and makes recognition of the underlying in 62% of cases. This is particularly
supporting evidence from previous eating disorder – by individuals, their striking as it means the cycle of
research, this report outlines the families, their teachers, colleagues treatment, recovery and relapse can
impacts of eating disorders upon and friends and GPs – much more cause severe disruption to sufferers’
individuals, their families, the health difficult. It is the role of these wider education, with the potential for long
sector and wider UK economy. Our groups, in recognising disorders and term impacts on their employment,
findings provide a compelling case for supporting sufferers, that has led us professional development and lifetime
future (preferably early) interventions to include carers within our study earnings. In many cases, therefore,
to improve recovery rates for sufferers bringing to light a new set of social the effects are life long and thus
and to reduce the overall incidence and economic impacts that to date highly costly to the sufferer, their
of eating disorders. This conclusion have not been widely reported. families, and to society generally.
is pertinent to both the Deputy Prime
Minister’s recent announcement Historical challenges in recognising We have also identified stark trends
of £150 million of investment for eating disorders have influenced in the times involved both in seeking
children and young people with eating previous estimates of national help, getting effective help, and relapse
disorders, or who self-harm, and the prevalence. We have updated these rates (with relapse referring to repeat
Labour Party’s announcement that, estimates with recent population treatment for sufferers who had
if it wins May’s general election, it figures. For example, figures previously accessed treatment). Our
will prioritise spending on children’s published by the King’s Fund (2008) survey indicates that almost half of
mental health. updated to 2013 population levels sufferers will wait longer than a year
suggests that c600,000 people in the after recognising symptoms before
Eating disorders are a group of UK suffer from an eating disorder seeking help. This is of particular
illnesses defined by the National while, in contrast, the National concern as the speed at which help is
Institute of Mental Health as being Institute for Clinical Excellence sought appears to be the single most
those in which the sufferer experiences (2004) suggest a higher level at important factor materially impacting
a preoccupation with body weight c725,000. Notwithstanding the on the likelihood of relapse. Those
and shape which disturbs their difficulty in quantifying the ‘total of our respondents who sought early
everyday diet and attitude towards population’ of sufferers the number help have a relapse rate of only 33%
food. Unusually, compared with of people being diagnosed and compared to an average level of 63%
other mental health issues, eating entering inpatient treatment for for all those who sought later help.
disorders result in both physical and eating disorders in England alone has
psychological symptoms and can increased at an average rate of 7%
have long term physical side effects year on year since 2009.
including organ failure, with Anorexia
Nervosa standing out as the disorder
with the highest mortality rate. They
include the more widely known
The Costs of Eating Disorders. Social, Health and Economic Impacts 7
The delay in seeking help is often types of care provided and duration As indicated, in Figure 1.0 below, our
coupled with a year long period of of treatment not only between regions findings suggest that most sufferers
waiting for a diagnosis followed by but also between sufferer groups are trapped in a repeating cycle of
periods waiting for treatment often (particularly men and women). seeking help, waiting for diagnosis,
over 6 months. Consequently on These results support Beat’s long- waiting for and receiving treatment
average our survey respondents held view that access to treatment and ultimately relapsing and requiring
experienced a lag of 15 months is inconsistent and arguably repeat treatment. The average time
or more between recognising inequitable. lag of 9 months between symptoms
symptoms and treatment starting being noticed and help being sought is
with 18% waiting 2 years or more. On average 63% of our respondents a critical component that requires the
Addressing waiting times has already experienced at least one relapse most attention if eating disorders are
been identified as a priority for the requiring repeat treatment. With no to be tackled, and sufferers effectively
Government’s £150m investment, but single treatment regime or type of supported. For more than half of
our findings suggest that this should intervention standing out from our sufferers this recurring cycle (of
be coupled with a broader review of analysis as being substantially superior waiting, treatment, recovery and
what can be done to help sufferers, to other interventions, i.e. capable of relapse requiring repeat treatment)
their families, their friends, teachers improving the chances of recovery for lasts for more than 6 years. This
and GPs recognise symptoms and seek this group, more research is needed has severe long term implications
help earlier. Early identification and to understand what works and why. given that such an extended period
intervention will thus have substantial Nevertheless, the case for earlier of disruption (to education or
benefits. intervention appears to be supported employment) often arises at the most
given the marked reduction in relapse critical period in a young person’s life.
Our survey results also suggest that (of 33%) for those sufferers that
there are substantial variances in recognised their symptoms and sought
waiting times, referral pathways, help quickly.
Figure 1.0
Treatment, recovery and relapse – the 6 year cycle
Average of 9 months
Symptoms emerge Seeking help
Diagnosis
Aver
age of 9 months
Relapse 63%
relapse
rate
Waiting for
treament
Recovery
Treatment
M rs
ul a
tip
6 ye
le
rel n of
aps
es w a ti o
it h a n a dur
verage total
8 The Costs of Eating Disorders. Social, Health and Economic Impacts
In assessing the implications to the In relation to the impact of time off When these broader impacts, and the
individual and society of this cycle work and education across all our financial costs and loss of earnings,
we have focused upon three cost respondents levels of c. £650 per are considered in the context of the
categories: annum were recorded for sufferers potential range of sufferers in the UK
under the age of 20, c. £9500 for there is a compelling case for change.
1. The direct financial burden to sufferers over the age of 20 and c.
sufferers and carers (excluding any £5,950 per annum for carers. In We have proposed three key priorities
payment for private treatment); addition the qualitative responses to for further investment: equipping
our survey – vignettes of which have sufferers and their GPs, teachers,
2. Treatment costs (including both been included throughout the report families and peers to recognise and
NHS and private providers); and – indicate that there is also a longer refer cases more quickly to create the
term impact on earnings well beyond opportunity for early intervention;
3. The loss of earnings, to sufferers the initial average 6 year cycle of unblocking the delays in receiving
and carers, resulting from disruption treatment. diagnosis and effective treatment; and
to education, employment and funding holistic treatments that not
professional development. Based on prevalence estimates drawn only enable better treatment outcomes,
from previous studies, of between but also reduce the lifetime impact of
For sufferers in our survey the direct 600,000 and 725,000, these costs eating disorders on the well-being of
financial burden, related to treatment suggest – assuming a ratio of 1 carer sufferers and their carers and families.
travel and other costs (such as lost to 1 sufferer – an annual direct
university fees) are on average financial burden of between £2.6 Finally, in supporting effective
c. £1,500 per year. This impact is also billion and £3.1 billion on sufferers investment, we have also recognised
mirrored for carers who reported an and carers, total treatment costs two important areas urgently
average level of c. £2,800 across the to the NHS of between £3.9 billion requiring further investigation,
same categories. and £ 4.6 billion (and, potentially, a namely establishing the full size
further £0.9 – £1.1 billion of private of the issue – confirming current
In calculating average treatment treatment costs) and lost income to UK-wide prevalence rates – and
costs we have combined our survey the economy of between £6.8 billion reviewing which treatments and
data of different treatment pathways and £8 billion. interventions can enable greater
with national data on such pathway levels of permanent recovery.
costs. We have identified an annual These costs sit alongside much
average cost of £8,850 to treat broader personal impacts on the
someone suffering with an eating lives of sufferers and their carers
disorder. These costs are based and families with over 90% of our
on mental health treatment types survey respondents reporting a very
and, therefore, do not include the significant or significant impact on
treatment of physical symptoms that their well-being and quality of life.
are commonly prescribed for a typical
eating disorder sufferer. As such they
may overestimate or underestimate the
actual treatment costs involved. In the
latter case, for example, some of our
respondents indicated levels of up to
£100,000 annual treatment costs.
The Costs of Eating Disorders. Social, Health and Economic Impacts 9Context
“My daughter has suffered
from anorexia nervosa
for 25 years. She has had
various treatments over
the years and lasting
different periods of time.”
10Beat1 is the UK’s only nationwide In addressing these questions we children and young people with eating
organisation supporting people have carried out a wide range of disorders and those who self-harm3.
affected by eating disorders, their secondary research summarised in The investment is due to be spent over
family members and friends and the bibliography at the end of this 5 years and will focus on channelling
campaigning on their behalf2. They report. Alongside this we surveyed 435 money to local service provision in
also provide advice, support and sufferers of eating disorders and 82 order to develop waiting time and
information for those suffering from individuals who described themselves access standards for eating disorders
a range of eating disorders2. Beat in a caring or supportive role to by 2016.
aims to change the way people think sufferers. There were 27 male and
and talk about eating disorders, 490 female respondents. Our survey In addition to this the Labour Party
to improve the way services and also represented a range of age-groups has announced that if it wins May’s
treatment are provided and to help with 123 sufferers aged under 20, 245 general election it will prioritise
anyone believe that their eating between the ages of 20 and 29, 106 children’s mental health by increasing
disorder can be beaten. In order to between the ages of 30 and 39 and the proportion of the budget assigned
achieve these aims, Beat challenges 43 aged 40 and over (at the time of in order to improve waiting times
the stereotypes and stigma that people answering the survey). We also received and ensuring all schools have access
with eating disorders face, campaigns survey responses across all 12 of the UK to a counsellor amongst a series of
for better services and treatment and Government Office Regions providing a supporting measures4.
provides information, support and breadth of geographical perspectives.
encouragement to seek treatment and, This report allows for a greater
ultimately recover. Whilst the survey findings cannot understanding of the impacts upon
be described as “statistically individuals, their families, the health
Beat commissioned PwC to conduct a representative”, as a result of the sector and the wider economy. It is
programme of primary and secondary accepted lack of clarity on overall clear from this review that the impacts
research in order to assess some prevalence estimates described of eating disorders upon individuals
of the key economic, health and throughout this report, it does present are severe and often long lasting,
social impacts attributable to eating a detailed and consistent overview of but pathways to recovery are both
disorders. The primary objective of the range of impacts (both costs and possible and achievable if effectively
this work was to review and gather outcomes based) experienced across a recognised, tackled and supported.
evidence in relation to the: large sample. Full details of our research
approach are included at Appendix 1
• Scale and challenge associated with with the supporting questionnaire
eating disorders in the UK, focusing referenced at Appendix 2.
on economic, health and social
impacts; In terms of the wider policy context,
that the findings of this report are
• Prevalence and trends associated pertinent to, the Deputy Prime Minister
with eating disorders in the UK; and recently announced £150 million of
investment to improve the treatment of
• Financial burden on the
exchequer as a consequence of
eating disorders, and consequent
exchequer savings of addressing
such disorders.
1
Beat is legally registered as the Eating Disorders Association; however it chose to be recognised as Beat from February 2007.
2
Beat About Us, Available at: http://www.b-eat.co.uk/about-beat/about-us/
3
UK Government (2014) Deputy PM announces £150m investment to transform treatment for eating disorders, Available at
https://www.gov.uk/government/news/deputy-pm-announces-150m-investment-to-transform-treatment-for-eating-disorders
4
BBC (2015) Miliband pledges to end child mental health “neglect”, Available at :http://www.bbc.co.uk/news/uk-politics-30871900
The Costs of Eating Disorders. Social, Health and Economic Impacts 11What are eating disorders?
“My ED started age 10 after a
death in the family as a way
of coping. 10 years later and
although I’ve moved on, I still
find my eating habits hard and
still have issues every day.”
12 The Costs of Eating Disorders. Social, Health and Economic ImpactsOverview Increases in understanding of eating
disorders, especially the lesser known
Research involving GP data in the disorders, may explain the increase in “I have headaches,
UK indicates an increase in the age- levels of reporting. The improvement kidney infections,
standardised annual incidence of all in reporting systems and accuracy
diagnosed eating disorders (for ages of data may also have exposed cases digestive problems
10-49) from 32.3 to 37.2 per 100,000 previously disguised in national data (IBS), sore throat,
between 2000 and 2009. This was sets by co-morbidities. and physical
mainly due to an increase in the
unspecified eating disorder category It should also be noted that binge weakness/pain,
(EDU), as Anorexia Nervosa (AN) eating disorder has only recently been and dizziness, hair
and Bulimia Nervosa (BN) numbers acknowledged as an eating disorder25. falling out, muscle
remained fairly stable24. An increase Based on our survey sample, 3.5%
has also been observed in hospital of respondents were suffering from cramps, bloating,
admissions for a primary diagnosis of binge eating disorder. depression, and
eating disorders. sleep disturbances.
A time series analysis of data on I worry all the time
the total number of cases of eating about passing this
disorders being diagnosed in England disorder on to my
illustrates a similar trend in increasing
prevalence over time. daughter.”
Figure 2.1
What are eating disorders?
There are many different Eating disorders can Eating disorders are
types of eating disorder, involve either overeating predominantly found
not just anorexia nervosa (e.g. binge eating disorder, in adolescent females
and bulimia nervosa bulimia nervosa) or however males and
undereating (anorexia females of all ages can be
nervosa) affected
There is no one cause of There is a wide range Reports estimate that with
eating disorders, it is of symptoms of eating the right treatment almost
thought to be a range of disorders, both physical half of sufferers make a
influencing factors and psychological. These full recovery, with many
have a range of impacts up more making significant
to and including death improvements
The Costs of Eating Disorders. Social, Health and Economic Impacts 13What are eating disorders? • Self-avoidance of fattening foods Whilst this report covers disorders that
and possible compensatory may in turn lead to sufferers becoming
Eating disorders are a group of measures e.g. self-induced obese rather than underweight, such
illnesses in which the sufferer vomiting, excessive laxative use or as binge eating disorder, it does not
experiences issues with body weight use of appetite suppressants8. deal explicitly with those eating
and shape, which disturbs their disorders which may be associated
everyday diet and attitude towards Similarly BN is defined as: with pure obesity even though it is
food5. widely accepted that an important
• Recurrent episodes of binge eating subset of obese people do indeed have
The World Health Organisation and experiencing a lack of control a profound and debilitating unhealthy
(WHO)6 provides in-depth definitions over the quantities consumed; relationship with food just as those
for anorexia nervosa (AN) and bulimia with AN and BN do. As such, our
nervosa (BN) and these were the basis • Recurrent compensatory behaviour, estimates of incidence and impact are
of our research into eating disorders such as self-induced vomiting, likely to be an underestimate of the
(for full definitions see Appendix 1). misuse of medication (e.g. impact of all eating disorders.
The WHO acknowledges that AN laxatives), fasting or excessive
involves deliberate weight loss induced exercise; and
and sustained by the patient due to
an excessive preoccupation with their • These behaviours must have
body weight and shape. The fear of occurred on average twice a week
gaining weight leads to a restricted diet for the last three months.
(which may result in under-nutrition),
excessive exercise, use of purgatives Other Eating Disorders
etc. It is also noted that BN consists of While anorexia nervosa and bulimia
repeated bouts of overeating followed nervosa are the most commonly known
by vomiting or use of purgatives to eating disorders, it is important to
ensure control of body weight. note that there is a much wider range
of eating disorders that can impact on
AN has also been defined in the people’s lives, their families, carers
following way by the Parliamentary and communities. In statistical terms
Office of Science and Technology7 and these fall into the category of “Eating
by the National Health Service: Disorder Unspecified”9 or “other”. One
such eating disorder is binge eating
• A maintained body weight at least disorder10, which is characterised as:
15% below that expected for a
person given their age and height; • Eating, in a discrete period of time,
an amount of food that is definitely
• An intense fear of gaining weight or larger than most people would eat
becoming fat; in a similar period of time under
similar circumstances; and
• A distorted view of one’s body
weight and shape which strongly • A sense of loss of control over eating
influences self-image and self- during the episode (for example, a
worth; and feeling that one cannot stop eating
or control what or how much one is
eating).
5
National Institute of Mental Health (2011) Eating Disorders, Available at: http://www.nimh.nih.gov/health/publications/eating-disorders/index.shtml#pub1
6
World Health Organisation (2010) ICD-10, Available at: http://apps.who.int/classifications/icd10/browse/2010/en#/F50
7
Parliamentary Office of Science and Technology (2007) Eating Disorders, London.
8
National Health Service (2014) Eating Disorders – Introduction, Available at: https://www.evidence.nhs.uk/topic/eating-disorders
9
Eating disorder unspecified (EDU) is an eating disorder that does not meet the criteria for anorexia nervosa or bulimia nervosa.
10
American Psychiatric Publishing (2013) DSM-5, Available at: http://www.dsm5.org/documents/eating%20disorders%20fact%20sheet.pdf
14 The Costs of Eating Disorders. Social, Health and Economic ImpactsWho gets eating disorders? It is acknowledged that eating What causes eating
disorders can develop at any age, with disorders?
Eating disorders tend to be more reported cases in children as young
common in females than in males, as 6 and women in their 70s14. Most There is no simple answer to the
with research indicating that less eating disorders, however, develop question of what causes eating
than 10% (9.2%) of those admitted in adolescence with those under 20 disorders, with research indicating
to hospital with eating disorders in making up almost half (49%) of all that it is usually a combination of
2012/13 are male11. Other research, those receiving inpatient treatment for influencing factors16. As illustrated at
however, indicates that up to 25% of an eating disorder in England. NHS Figure 2.2, typical contributing factors
sufferers are males12. It is possible that guidance on eating disorders notes that can include genetic influences, the
because males make up the minority anorexia nervosa commonly develops impact of puberty, stress, life events
of sufferers, there are issues around around the ages of 16-17, while bulimia and the growing influence of social
diagnosis due to lack of awareness of nervosa develops at 18-19 and binge media driven pressures.
the problem among men. They may eating disorder appears later in life,
also be reluctant to come forward due usually between the ages of 30-4015.
to the stigma attached13.
Figure 2.2
What causes eating disorders?
Lack of an
Genetics
“off switch”
research suggests genetic
allowing
makeup can make some
maintenance of
people more vulnerable to
dangerously low
eating disorders
calorie intake
Emotional
What causes
distress/ Life eating
Events disorders?
including
bereavement,
divorce etc
Puberty
range of physical and
emotional changes
can trigger an eating
disorder
Media/ Social Pressures
66% said media images had a negative
-
impact on their self esteem
Source: Royal College of Psychiatrists, 201414
11
Health and Social Care Information Centre (2013) Hospital Episode Statistics, Admitted Patient Care, England 2012-2013, Available at:
http://www.hscic.gov.uk/catalogue/PUB12566
12
Beat (2010) Beat: Facts and Figures, Available at: http://www.b-eat.co.uk/about-beat/media-centre/facts-and-figures/
13
Parliamentary Office of Science and Technology (2007) Eating Disorders, London
14
Royal College of Psychiatrists (2014) Anorexia and Bulimia, Available at: http://www.rcpsych.ac.uk/healthadvice/problemsdisorders/anorexiaandbulimia.aspx
15
NHS Choices (2013) Eating Disorders, Available at: http://www.nhs.uk/conditions/eating-disorders/pages/introduction.aspx
16
Strober, M., Freeman, R., Lampert, C., Diamond, J. and Kaye, W (2000) ‘Controlled Family Study of Anorexia Nervosa and Bulimia Nervosa: Evidence Shared
00Liability and Transmission of Partial Syndromes’, The American Journal of Psychiatry, 157, pp. 393-401 [Online]. Available at: http://ajp.psychiatryonline.org/ 11
00 00article.aspx?articleid=174007
The Costs of Eating Disorders. Social, Health and Economic Impacts 15Linked Conditions
“My first occurrence
went undiagnosed – One of the persistent challenges
in diagnosing and treating eating
treated as depression; disorders, and indeed in analysing
only offered trends in prevalence and reporting, is
antidepressants” that it is common for eating disorders
to occur alongside other mental health
issues, as illustrated in Figure 2.3.
Therefore, eating disorders are
often one of a number of conditions
that simultaneously impact upon
individuals. This is a contributing factor
to the difficulty in recognising and
ultimately treating eating disorders.
Figure 2.3
Other conditions linked to eating disorders
Depression
Reported in 50-75% of sufferers
Personality disorders
Present in 42-75% of eating disorder patients
Substance abuse
Present in 30-37% of BN sufferers and
12-18% of AN suffferers
Obsessive Compulsive Disorder
Approximately a 25% incidence rate in AN
Bipolar Disorder
Present in 4-6% of sufferers
Source: Practice Guidelines produced by American Psychiatric Association17
17
American Psychiatric Association (2006), ‘Practice guideline for the treatment of patients with eating Disorders’,
available at: http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/eatingdisorders.pdf
16 The Costs of Eating Disorders. Social, Health and Economic ImpactsWhat are the physical
impacts and long term side Physical Impacts17 Psychological17
effects of an eating disorder?
• Difficulty eating due to a • Sleep problems
Among mental health conditions,
shrunken stomach
eating disorders are unusual in that • Anxiety disorders
the symptoms are both psychological • Feel tired, weak and cold as
• Difficulty concentrating on
and physical. Physical symptoms can metabolism slows
anything other than food and
have long-term health implications,
• Constipation calories
although each sufferer will experience
different symptoms at different times • Changes in hair and skin • Feeling down or depressed
during their illness. including hair loss, growing
• Loss of interest in other people
downy hair, dry skin
There are also many long-term side • Obsessive behaviours related
• Not growing to full height or
effects which may carry on even after to food may transfer to other
losing height with a bowed
recovery18: areas such as cleaning,
over appearance
washing, etc.
• Anorexia Nervosa – poor • Brittle bones
functioning of the body (especially
brain, heart, liver and kidneys);
infertility; osteoporosis and stunted
growth; and
• Bulimia Nervosa – painful
swallowing due to drying of the
salivary glands; imbalance or
low levels of essential minerals; What tools are currently
increased risk of heart problems; available to support
severe damage to the stomach, diagnosis?
oesophagus, teeth, salivary glands can be carried out, including muscle
and bowel. Eating Disorders are typically strength, hydration, blood pressure
diagnosed once a sufferer or their carer and pulse rate, peripheral circulation
Those who suffer from a long term seeks medical help (often from their and core temperature20.
eating disorder may also struggle due GP) for the symptoms that are present.
to associated impairment in areas such There are a variety of ways in which an Other indicators of risk that may
as social, work, leisure and family life19. eating disorder can be recognised and support a diagnosis include excessive
Many of these elements are perhaps diagnosed, from medical tests to the exercise with low body weight, blood
not as well understood. They can have SCOFF screening tool (see appendix 5). in vomit, inadequate fluid intake and
lasting impacts in terms of continuing rapid weight loss21.
education, gaining or sustaining Calculating BMI (Body Mass Index)
employment as well as maintaining an and conducting blood tests can help
active social life – with eating disorders diagnosis but provide inadequate
often the key contributing factor to findings in isolation. A number of tests
these impacts.
17
Beat (2010) Beat: Facts and Figures, Available at: http://www.b-eat.co.uk/about-beat/media-centre/facts-and-figures/
18
Beat (2011) Caring for a child or adolescent with an eating disorder.
19
Mitchison, D., Hay, P., Engel, S., Crosby, R., Le Grange, D., Lacey, H., Mond, J., Slewa-Younan, S. and Touyz, S. (2013) ‘Assessment of quality of life in people
with severe and enduring anorexia nervosa: a comparison of generic and specific instruments’, BMC Psychiatry, 13(284), pp. [Online]. Available at: http://
www.biomedcentral.com/1471-244X/13/284
20
American Psychiatric Publishing (2013) DSM-5, Available at: http://www.dsm5.org/documents/eating%20disorders%20fact%20sheet.pdf
21
Treasure. J. (2009) A Guide to the Medical Risk Assessment for Eating Disorders, South London: King’s College London/ South London and Maudsley NHS
Foundation Trust.
The Costs of Eating Disorders. Social, Health and Economic Impacts 17How can eating disorders be Treatment goals across this range of difficult and may also impact on the
treated? options are not always based on full perception of the care received. In the
recovery and remission of all symptoms most severe cases of patients refusing
Once diagnosed, there are many but instead reflect improvements in treatment due to fear of gaining weight
potential therapies that can aid the social and occupational function23. they may be treated under the Mental
treatment of eating disorders, as This allows patients to have a more Health Act.24, 25
shown in Figure 2.4. These include positive focus on improving their
cognitive behavior therapy (CBT) quality of life instead of focusing solely
and other forms of psychotherapy on their weight.
including family therapy and self-
help programmes22. The most severe Those who are suffering from eating
cases can involve extended periods of disorders rarely seek professional help
inpatient treatment, delivered either unless prompted due to fear of gaining
privately or through the NHS. weight, which can make treatment very
Figure 2.4
Forms of treatment for eating disorders
Hospital care:
Hospital care:
inpatient treatment
day patient
- term in the
(often long
treatment
most severe cases)
How are eating
disorders
Family treated?
Therapy,
Guided Self -
Help,
provision of Hospital care:
information outpatient
or advice, etc. treatment
Cognitive Behavioural Therapy or
Interpersonal Therapy
22
NICE (2004), ‘Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders’ as cited in
Parliamentary Office of Science and Technology (2007) Eating Disorders, London: POST.
23
American Psychiatric Association (2006), ‘Practice guideline for the treatment of patients with eating Disorders’,
available at: http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/eatingdisorders.pdf
24
Royal College of Psychiatrists (2012) “Main findings of the 2008 survey of eating disorder services in the UK and Ireland” in Eating Disorders in the UK:
service distribution, service development and training, London: Royal College of Psychiatrists.
25
Beat (2011) Caring for a child or adolescent with an eating disorder.
18 The Costs of Eating Disorders. Social, Health and Economic ImpactsCarers The Department of Health also
acknowledged in 201429 that “Doctors wanted
Eating disorders – like other mental supporting carers and involving to treat me as an
and physical health conditions – carers in treatment decisions was
require non-medical care and support a key priority in improving mental inpatient, but as
in the home. In many cases, this is health provision, and whilst no there was a waiting
provided by a friend or family member. specific provisions are made for eating list they agreed that
The NHS states that anyone looking disorders within this strategy, there
after an ill, disabled or frail relative are parallels between the emotional if my mum took time
or friend should be recognised as a and financial “drains” on carers that off and was my full
carer26, with a carer defined by The form the basis of this priority and those time carer I could
Carers Trust – a national network reported in our survey. Further work to
charity, supporting unpaid carers understand the specific needs of carers stay at home. So
across the UK – as “anyone who cares, of sufferers of eating disorders and this impacted on her
unpaid, for a friend or family member the most appropriate support to them greatly.”
who due to illness, disability, a mental should therefore be considered in any
health problem or an addiction cannot review of treatment interventions.
cope without their support.” It is
thought that there are up to 7 million Recovering from eating
carers in the UK, 1.5 million of whom disorders
care for someone with mental health
problems. The cost savings to the NHS Beat has campaigned vigorously about
due to the work of carers in the UK is the fact that people can overcome
approximately £119 billion a year27. their eating disorders, although people
can and do die. Previous studies have
The Carers Trust has specifically found that of those who had been
acknowledged the critical role of carers diagnosed with anorexia nervosa, 46%
in the treatment of people with mental made a full recovery, 33% improve
health disorders, in their “Triangle of without making a full recovery and
Care” guide launched in July 201028, 20% remain chronically ill”30. A similar
emphasising the need for better local study into bulimia nervosa found that
strategic involvement of carers and 45% recover, 27% make a considerable
families in the care planning and improvement and 23% remain
treatment of people with mental ill- chronically ill31.
health.
26
NHS (2015) Your guide to care and support. Available at: http://www.nhs.uk/conditions/social-care-and-support-guide/Pages/what-is-social-care.aspx
27
Carers Trust (2012) Key facts about carers, Available at: http://www.carers.org/key-facts-about-carers
28
The Triangle of Care Guide was launched as a joint piece of work between Carers Trust and the National Mental Health Development Unit (https://
professionals.carers.org/working-mental-health-carers/triangle-care-mental-health)
29
Closing the Gap: Priorities for essential change in mental health
30
Steinhausen, HC. (2002) ‘The outcome of anorexia nervosa in the 20th century’, American Journal of Psychiatry, 159(8), pp. 1284-1293.
31
Steinhausen, HC. and Weber, S. (2009) ‘The Outcome of Bulimia Nervosa: Findings from One-Quarter Century of Research’, The American Journal of
Psychiatry, 166(12), pp. 1331-1341.
The Costs of Eating Disorders. Social, Health and Economic Impacts 19Prevalence
“My daughter has suffered from
anorexia nervosa for 25 years.
She has had various treatments
over the years and lasting
different periods of time.”
20 The Costs of Eating Disorders. Social, Health and Economic ImpactsThis section contains the basis upon • Estimates of the likelihood of • Taken the proportion of hospital
which we have estimated the prevalence prevalence in those up to the age of admissions to total admissions of
of eating disorders in the UK. Given the 34; and those with eating disorders aged over
underlying complexity of eating disorders 35 (at a level of 21%) as a proxy of the
(leading to inconsistency in how they are • The exclusion of any estimates of EDU total percentage of those likely to be
diagnosed) there is a wide variance in (including binge eating disorder). missed by both of these studies.
previous national prevalence estimates
which, in turn, are often derived from To address these two issues, we have: As a result we estimate that prevalence,
historical or international studies. This as illustrated in Table 3.1, could be at a
is, in part, a reflection of the lack of • Refreshed the Kings Fund data with level of 608,849.
consistent or comprehensive reporting up-to-date population statistics from
within the health care sector – eating ONS;
disorders have until recently only been
specifically categorised under in-patient • Added – based on Hoek & van Hoeken
data. Similarly, and as reflected by our study data (2003) – the total number
survey results, there may be cases where of under 34 people suffering in the UK
eating disorders are recorded wrongly or from binge eating disorders at a level
not at all. of 281,000; and
Notwithstanding the above, BEAT has
several concerns about the published Table 3.1
studies of prevalence that we equally Adjustments to Kings Fund estimates
share. For example the “lowest” level of
prevalence – at around 91,600 sufferers Updated initial projections (under 34, AN and BN only) 199,167
in the UK – is recorded by a 2008 study
Binge Eating Disorder prevalence 281,823
conducted by the Kings Fund. This level is
Assumed 21% of 35 or older sufferers 127,859
based on:
Total 608,849
At the “higher” end of the range of To form a comparable estimate derived • Added (based on the trends in male
estimates, prevalence levels are most from this source to the estimates derived to female sufferer ratios from other
frequently derived from those included in from the Kings Fund and Hoek & van disorder types at a level of 10%) an
National Collaborating Centre for Mental Hoeken study data, we have: estimated prevalence rate for male
Health’s 2004 report32. Most frequently suffers of binge eating disorder.
reported as a total UK sufferer count of • Refreshed the data to reflect the latest
1.6m, the prevalence estimates contained UK population statistics; As a result, as indicated in Table 3.2, we
in this report are based on comparative have derived a higher level estimate of
international studies covering: • Adopted the lower levels of 724,845.
prevalence recorded in the report for
• Total population estimates for AN for binge eating disorders given that the
men and women; higher levels in the report are drawn
specifically from studies of obese
• Total population estimates for BN for populations; and
women and relative frequency for
men; and
Table 3.2
Application of National Collaborating Centre for Mental Health prevalence indicators
• Emerging conclusions on a wide
range of incidence for binge eating
AN prevalence 6,819
disorder for women only.
BN prevalence 360,764
BED prevalence 357,261
Total ED prevalence 724,845
32
NICE (National Institute for Clinical Excellence) (2004) Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related
eating disorders, Great Britain: The British Psychological Society and Gaskell.
The Costs of Eating Disorders. Social, Health and Economic Impacts 21There are increasing
numbers of reported cases
of eating disorders in the UK
Separately from prevalence data research Table 3.3
involving GP data in the UK indicates Count of FAEs with primary diagnosis of eating disorder in England, 2005-2014
an increase in the age-standardised
annual incidence of all diagnosed eating
Count of Finished Admissions Episodes (FAEs) where the
disorders (for ages 10-49) from 32.3 to primary diagnosis was of eating disorders (England)
37.2 per 100,000 between 2000 and
2005-2006 1,882
2009. This increase appears to be due
2006-2007 1,924
to an increase in the unspecified eating
disorder category as AN and BN numbers 2007-2008 1,872
remained fairly stable33. 2008-2009 1,868
2009-2010 2,067
Separately, as outlined in Table 3.3, 2010-2011 [missing data]
time series analysis of data on the total 2011-2012 2,285
number of cases of eating disorders being
2012-2013 2,380
diagnosed in England illustrates a similar
2013-2014 2,855
trend in increasing prevalence over time
with a 34% increase in admissions since
2005-06 – approximately 7% per annum.
These recorded changes may reflect
increases in the understanding of eating
disorders especially the lesser known
disorders and particularly binge eating
disorder which has only recently been
acknowledged in statistical recording34.
Our survey indicates that Figure 3.1
eating disorders most Age when symptoms of an eating disorder first appeared
commonly initially present
Under 16 62
amongst the young, and
national data indicates that 16-19 24
they can also start later in life 20-24 9
and can be life-long conditions
25-29 2
30-34 2
35-39 0
40-49 1
50-59 0
60-69 0
70+ 0
0 10% 20% 30% 40% 50% 60% 70%
Base: 517
33
Micali, N., Hagberg, K.W., Petersen, I. and Treasure, J.L. (2013) ‘The incidence of eating disorders in the UK in 2000–2009: findings from the General Practice
Research Database’, BMJ Open, 3, pp. 1-9 [Online]. Available at: http://bmjopen.bmj.com/content/3/5/e002646.full.pdf+html?sid=81b1351b-1ad6-4fca-a2e7-
eaa7cbf951be
34
American Psychiatric Association, (2013) Feeding and Eating Disorders, Available at: http://www.dsm5.org/documents/eating%20disorders%20fact%20
sheet.pdf
22 The Costs of Eating Disorders. Social, Health and Economic ImpactsOur respondent age profile is Figure 3.2
broadly consistent with other Length of suffering from eating disorder
research which indicates that
many eating disorders emerge in Longer than 6 years 53
adolescence. The NHS, for example,
Between 5 & 6 years 8
noted that AN usually develops
around 16-17, BN around the Between 4 & 5 years 9
age of 18 or 19 with binge eating Between 3 & 4 years 8
disorder emerging slightly later
in life, between the ages of 30-40. Between 2 & 3 years 12
Similarly hospital admissions data Between 1 & 2 years 9
for 2012/13 also indicated that
Less than 1 year 1
those under 20 made up almost half
of all those admitted for treatment 0 10% 20% 30% 40% 50% 60% 70%
of eating disorders in England. Base: 517
As illustrated, in Figure 3.2, over
half of our respondents with eating
disorders have suffered for more
than 6 years. This is supported by
previous studies, where it has been
shown that some eating disorders
can be life-long conditions with
recovery rates for anorexia nervosa
and bulimia nervosa both fewer
than 50%35.
Generally, women are more Figure 3.3
afflicted than men Gender breakdown of survey respondents
While our survey respondents appear to The charity ‘Men Get Eating
be similar in breakdown as other studies Disorders Too’ specifically aims
and data (i.e. around 10% of sufferers to address these challenges by Male: 5.2%
are male) it should be noted that there supporting men with eating
may be under recording given lack of disorders (as well as their carers
awareness of eating disorders in men. and families).
Similarly there is also another, hidden
group of sufferers who may never
seek help for an eating disorder but
nevertheless experience the impacts of
an ED upon their life. This group may
contain a high percentage of males
given the reluctance among males to
seek medical help36. Female: 94.8%
35
Steinhausen, HC. (2002) ‘The outcome of anorexia nervosa in the 20th century’, American Journal of Psychiatry, 159(8), pp. 1284-1293.
36
Juel and Christensen (2008) Are men seeking medical advice too late? Contacts to general practitioners and hospital admissions in Denmark 2005, Journal
of Public Health.
The Costs of Eating Disorders. Social, Health and Economic Impacts 23Seeking help and diagnosis
“My daughter suffered age
12-14, had 4 good years then
relapsed spectacularly when
moving to university and was The following section details our findings
made to wait 10 months to regarding the point of seeking help for
eating disorder symptoms and subsequent
get any help, which she had diagnoses. Use of our survey and other
asked for and wanted. It was national data sources has enabled conclusions
a nightmare to watch as she to be made concerning the fundamental
importance of early diagnosis. Our primary
deteriorated and when she got conclusion is that there is a clear pattern of
to treatment it was already delay in seeking help for eating disorders,
entrenched and she was more which in turn delays diagnosis and treatment
creating more severe and long term impacts.
resistant to change. The impact Our survey indicates that the speed at which
of the poor treatment when help is initially sought has a material impact
she was 12/13 years old as an upon likelihood of relapse. This supports
our recommendation that future investment
inpatient makes her reluctant be focused on supporting recognition of
to trust treatment again.” symptoms and creating opportunities for
earlier intervention.
24 The Costs of Eating Disorders. Social, Health and Economic ImpactsDelays in seeking help
“I said I was fine and the GP left me
alone. I didn’t ask specifically for
help until another 8 months later.”
Almost half of sufferers wait longer than a year after recognising symptoms of
an eating disorder before seeking help
Figure 4.1
Time between recognising symptoms and seeking help
Immediately
Don’t know/
not sure
Within one
month
Between one
month and
six months
Between six
months and
one year
More than one
year after first
becoming
aware of
symptoms
0% 10% 20% 30% 40% 50%
Base:
517
As indicated at Figure 4.1, a large majority As outlined in later sections, we believe
of sufferers wait longer than 6 months this delay has a material impact on the
to seek help once they have noticed the outcomes for sufferers and carers, in
symptoms, or become aware of, their terms of recovery, as well as extending
eating disorder. the duration of impacts not only on the
individual’s health but also on their
This delay is significant, as our survey life more generally including work,
has indicated that those who seek help relationships and education, which
immediately are significantly less likely have associated economic impacts.
to require multiple episodes of treatment
for the eating disorder. For example, only It should be noted that the delay we
33% of those seeking help ‘immediately’ have identified does not account for
upon noticing symptoms require multiple the time before symptoms have been
episodes of treatment, compared to 63% recognised by the sufferer, which
of those who wait before seeking help. previous studies have indicated may
begin at the age of 6 in some cases37.
37
American Psychiatric Publishing (2013) DSM-5, Available at: http://www.dsm5.org/documents/eating%20disorders%20fact%20sheet.pdf
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