The costs of eating disorders - Social, health and economic impacts

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The costs of eating disorders - Social, health and economic impacts
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
The costs of eating disorders - Social, health and economic impacts
The costs of eating disorders - Social, health and economic impacts
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
The costs of eating disorders - Social, health and economic impacts
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
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
The costs of eating disorders - Social, health and economic impacts
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
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 costs of eating disorders - Social, health and economic impacts
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
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        9
Context

          “My daughter has suffered
           from anorexia nervosa
           for 25 years. She has had
           various treatments over
           the years and lasting
           different periods of time.”

10
Beat1 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          11
What 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 Impacts
Overview                                    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   13
What 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 Impacts
Who 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                       15
Linked 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 Impacts
What 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                       17
How 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 Impacts
Carers                                          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            19
Prevalence

     “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 Impacts
This 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                    21
There 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 Impacts
Our 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                23
Seeking 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 Impacts
Delays 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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