Eating disorder services - Joint Commissioning Panel for Mental Health

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Eating disorder services - Joint Commissioning Panel for Mental Health
Guidance for commissioners of eating disorder services   1

Joint Commissioning Panel
for Mental Health

                             Guidance for commissioners of

                            eating disorder

                                mental health
Eating disorder services - Joint Commissioning Panel for Mental Health
Joint Commissioning Panel
for Mental Health

 Co-chaired by:

Eating disorder services - Joint Commissioning Panel for Mental Health
2    Practical Mental Health Commissioning


    Ten key messages              Introduction        What are eating      Why are eating
    for commissioners                                 disorder services?   disorder services
                                                                           important to

                                  04                  06                   08
    What do we                     What would         Supporting the       Resources
    know about                     a good eating      delivery of the      and references
    current eating                 disorder service   Mental Health
    disorder services?             look like?         Strategy

    10                             12                 19                   21
Eating disorder services - Joint Commissioning Panel for Mental Health
Guidance for commissioners of eating disorder services   3

Ten key messages for commissioners

1   Eating disorders are severe mental           4   The burden of ED on carers is very high.             As part of this, a priority for
    illnesses with serious psychological,            People with ED are often ambivalent                  commissioners of comprehensive
    physical and social consequences.                about treatment even in the face of                  ED services must be to commission
    Anorexia nervosa (AN) has the highest            severe illness. This places carers in a              integrated care pathways that support
    mortality amongst all psychiatric                position of battling against their loved             flexible and seamless patient care. NHS
    disorders1. People with ED commonly              one whilst worrying that they are to                 England and Clinical Commissioning
    experience additional mental health              blame. Caring for someone with an ED                 Groups should have a commitment to
    problems, particularly depression2,              carries a high emotional and economic                work together to ensure this.
    physical illness, difficulties in intimate       cost. Carers of anorexic patients have
    relationships and the interruption of            reported similar experiences in terms            8   Health care costs for ED in England
    educational/occupational goals.                  of the difficulties experienced to those             have been estimated as £80-100m with
                                                     of carers of adults with psychosis and               overall economic cost likely to be more
2   Over 1.6 million people in the UK are            higher levels of psychological distress4.            than £1.26bn per year7. This highlights
    estimated to be directly affected by                                                                  the importance of optimising service
    eating disorders3. This is likely to be      5   There is a critical window for                       provision for this group of patients.
    an underestimate as we know there                intervention for people with ED. AN                  Effective and well-managed care
    is a huge level of unmet need in the             does not improve spontaneously and                   pathways will be critical to this.
    community. These illnesses usually begin         the prognosis for all ED worsens with
    in adolescence and young adulthood               time. Recovery is less likely if an ED           9   Stigma related to ED has far-reaching
    with a worrying trend towards younger            has remained untreated for more than                 effects. Misunderstanding of these
    children developing ED. Onset at                 3-5 years5. Early identification and                 illnesses influences (a) people who
    this critical time in a young person’s           intervention with access to effective                are deterred from asking for help and
    life can have a devastating effect on            stepped care pathways is of paramount                support through fear of being judged,
    normal development with a restriction            importance to improve clinical outcome               (b) carers who often feel blamed, (c)
    of opportunities that can extend into            and increase cost-effectiveness.                     health professionals in their treatment
    adult life. The development of personal                                                               decision-making, and (d) the health
    autonomy and independence can also be        6   Good quality comprehensive services                  service and commissioners through lack
    affected, which can have an impact on            for people with ED are not yet available             of structural investment in ED services.
    meaningful engagement with treatment             in many parts of England. The majority
    and outcome.                                     of people with ED are therefore                  10 Further research is necessary to develop
                                                     managed in non-specialist settings where            optimal interventions and care pathways
3   Transitions between different services           treatment is very variable6. Access to              for people with ED. Severe and enduring
    are the norm for patients with ED:               specialist treatment for all people with an         or ‘treatment resistant’ cases present
    primary, secondary and tertiary care;            ED in England should be a priority in the           the highest cost (per patient). Evidence
    medical and mental health services;              new commissioning landscape.                        for the most effective management of
    child and adolescent services and adult                                                              these cases is sparse. In order to improve
    services; family home and student            7   New commissioning arrangements                      overall outcomes and cost-effectiveness,
    abode. Robust transitional policies must         have the potential to disrupt a patient’s           and particularly for this high cost group,
    be developed and training needs met to           treatment because community services                ongoing investment in clinical services for
    avoid the associated risks to patients.          and more intensive services (daycare                research, development and innovation is
                                                     and inpatient) are commissioned                     a must.
                                                     separately. Ensuring clinical and cost-
                                                     effectiveness, particularly for those
                                                     with severe ED, requires access to both
                                                     community and residential components
                                                     in a flexible way, unhampered by
                                                     funding streams.
Eating disorder services - Joint Commissioning Panel for Mental Health
4   Practical Mental Health Commissioning


The Joint Commissioning Panel               The JCP-MH is part of the implementation          WHAT IS THIS GUIDE ABOUT?
for Mental Health (JCP-MH)                  arm of the government mental health
                                            strategy No Health without Mental Health8.        This guide is about the
( is a new                                                                     commissioning of comprehensive
collaboration co-chaired by                 The JCP-MH has two primary aims:
                                                                                              eating disorder (ED) services
the Royal College of General                • to bring together people with experience        for people of all ages.
Practitioners and the Royal                   of mental health problems, carers,
College of Psychiatrists. The                 clinicians, commissioners, managers and         From April 2013, NHS England began to
                                              others to work towards values-based             commission ED services. These services range
JCP-MH brings together leading
                                              commissioning                                   from Tier 4 CAMHS ED units, through to
organisations and individuals
                                            • to integrate scientific evidence, the           adult specialist ED services. Specialist services
with an interest in commissioning             experience of people with mental health         include inpatient care and bespoke packages
for mental health and learning                problems and carers, and innovative             of care for intensive day care services (as
disabilities. These include:                  service evaluations in order to produce the     an alternative to admission). There is also
                                              best possible advice on commissioning the       provision for non-admitted care associated
• people with experience of                   design and delivery of high quality mental      with inpatient treatment including outreach.
  mental health problems and carers           health, learning disabilities, and public       Tier 4 CAMHS also includes outpatient
• Department of Health                        mental health and wellbeing services.           provision for children and young people with
• Association of Directors                                                                    complex ED. In doing this, NHS England will
  of Adult Social Services                  The JCP-MH:
                                                                                              be guided by service specifications developed
• NHS Confederation                         • has published Practical Mental Health           by appointed Clinical Reference Groups for
• Mind                                        Commissioning9, a briefing on the key           CAMHS and adult services.
• Rethink Mental Illness                      values and principles for effective mental
                                                                                              Clinical Commissioning Groups (CCGs)
• National Survivor User Network              health commissioning
                                                                                              commission CAMHS for children
• National Involvement Partnership
                                            • has so far published thirteen other guides      requiring Tier 1, 2 or 3 services and
• Royal College of Nursing
                                              on the commissioning of primary mental          multi-disciplinary adult community ED
• Afiya Trust
                                              health care services10, dementia services11,    services. These community-based services
• British Psychological Society
                                              liaison mental health services to acute         will perform a ‘gate-keeping’ function
• Representatives of the English
                                              hospitals12, transition services13, perinatal   for admission and may also include less
  Strategic Health Authorities
                                              mental health services14, public mental         intensive day-patient services.
  (prior to April 2013)
                                              health services15, rehabilitation services16,
• Mental Health Providers Forum
                                              drug and alcohol services17, forensic
• New Savoy Partnership
                                              mental health services18, acute care
• Representation from
                                              (inpatient and crisis home treatment)19,
  Specialised Commissioning
                                              community specialist mental health
• Healthcare Financial
                                              services20, mental health services for
  Management Association.
                                              people with learning disabilities21, and
                                              older people’s mental health services22
                                            • provides practical guidance and a
                                              developing framework for mental health.
Eating disorder services - Joint Commissioning Panel for Mental Health
Guidance for commissioners of eating disorder services   5

This guide aims to:                               • NHS England who will be responsible for         By the end of this guide, readers should
                                                    commissioning specialist ED services for        be more familiar with the concept of
• complement these specifications by
                                                    children and adults                             ED services and better equipped to
  outlining current provision and detailing
  the components of a high quality                • service providers including generic adult
  comprehensive ED service                          and child and adolescent mental health          • the nature of ED and the effect that
• provide additional information about the          services in addition to specialised ED            these illnesses have on physical,
  nature of ED (with particular reference           services                                          psychological and social functioning
  to factors which affect the utilisation of      • Public Health England when considering          • the particular aspects of ED which can
  services and health outcomes)                     preventive strategies for ED and obesity          affect engagement, response to treatment
• highlight the importance of ensuring                                                                and outcome
                                                  • patients and carers to inform expectations
  commissioning for integrated ED services
                                                    about ED services and to engage in              • the severity of ED and the necessity for
  across all ages and the range of severity;
                                                    discussion about the development of               comprehensive specialist treatment close to
  from mild to severe ED.
                                                    future services.                                  patients’ homes as early as possible in the
                                                                                                      course of the illness
                                                  HOW WILL THIS GUIDE HELP YOU?
                                                                                                    • the key components of a comprehensive
This guide should be of value to:                 This guide has been written                         ED service including the range of
                                                  by a group of ED service experts                    treatments and professional groups that
• Health and Wellbeing Boards who will
                                                                                                      should be available for patients with ED
  have a key role in integrating local services   including experts by experience.
  for people with ED and recognising social                                                         • the need for highly integrated services
  care needs of people (particularly those        Evidence-based practice has been                    and comprehensive care pathways
  with severe and enduring ED)                    summarised where it exists. However,                to ensure the safe and effective
                                                  robust evidence is lacking in many areas,           management of patients with the full
• CCGs and local authorities should be            and ideas deemed to be best practice by             range of severity of ED
  informed by the principles highlighted in       expert consensus have therefore been
  this guide, and CCGs should collaborate                                                           • the risk to patients with ED if
                                                  included. This guidance encourages services
  with NHS England to commission                                                                      commissioning of ED services is not
                                                  to develop flexibly alongside emerging
  integrated care pathways across                                                                     clinically informed and subject to ongoing
                                                  evidence, with a focus on innovation.
  community and day/inpatient treatment                                                               dialogue between commissioners, service
                                                                                                      providers, patients and carers.
Eating disorder services - Joint Commissioning Panel for Mental Health
6   Practical Mental Health Commissioning

What are eating disorder services?

WHAT ARE EATING DISORDERS?                    Bulimia nervosa                                 Other considerations
Eating disorders are mental disorders         BN is characterised by the consumption          Eating disorder presentation often changes
which are characterised by a preoccupation    of unusually large amounts of food              over the course of the illness, so it is
with food and/or weight and body shape        accompanied by a sense of lack of               not uncommon to move between ED
and harmful eating habits.                    control over eating (binge) alternating         diagnoses. Therefore clinical presentation,
                                              with ‘compensatory behaviours’ such             including risk, is often more important
If untreated an ED will begin to dominate     as self-induced vomiting, laxatives, diet       than diagnostic category in determining
a person’s life. ED impact on psychological   pills, diuretics, excessive exercise, and       care pathways.
functioning, physical health, social          restriction. (For patients with insulin
wellbeing, education/employment and                                                           People with ED often also:
                                              dependent diabetes, insulin restriction is
relationships.                                an additional problem which has serious         • have other mental health conditions
The three most common ED are anorexia         medical consequences). A preoccupation            (most commonly mood disorders,
nervosa (AN), bulimia nervosa (BN) and        with weight and shape dominates                   anxiety disorders, obsessive compulsive
binge eating disorder (BED).                  individuals’ lives. Although patients with        disorders, personality disorders
                                              BN are usually within the healthy weight          and drug/alcohol misuse), and
Anorexia nervosa                              range, physical complications such as             comprehensive psychiatric assessment
                                              electrolyte imbalance with associated             is therefore necessary to avoid missed
AN is characterised by restrictive eating
                                              cardiac abnormalities are common and              diagnoses
which results in severe weight loss. This
may be accompanied by other weight            BN is also associated with increased
                                                                                              • experience low self-esteem and feelings
control measures such as excessive            mortality24. In community-based studies
                                                                                                of guilt and shame
exercise, self-induced vomiting or laxative   the population prevalence of BN has been
                                              estimated between 0.5% and 1% in                • perceive their ED not as a problem, but
misuse. Individuals are preoccupied with
                                              young women25.                                    as a solution to psychological distress.
a drive for thinness, a fear of fatness,
and body image distortion. Low weight                                                         These aspects of ED often result in a delay
                                              Binge eating disorder
is associated with multiple physical                                                          in people accessing treatment, as well
complications and the mortality associated    BED is diagnosed when binge eating              as sometimes protracted ambivalence/
with AN is the highest of any mental          occurs in the absence of ‘compensatory          resistance to engaging with health
disorder, with some studies indicating        behaviours’. As a consequence people with       services. Evidence highlights that delay
that death rates are up to 10 times higher    BED are usually overweight/obese. The           in receiving treatment is associated with
among chronically ill patients compared       prevalence of obesity is increasing and the     poorer outcome5. Any avoidable obstacles
to the general population1. About 1 in        cost to the individual in terms of quality of   to accessing ED services must therefore be
250 females, and 1 in 2000 males, will        life, and to NHS resources, is high.            minimised as a priority.
experience AN in their lifetime with
onset most commonly occurring during          ’Eating disorder not otherwise specified’
adolescence or early twenties23. AN is        EDNOS is a diagnosis given when the
diagnosed when body mass index (BMI) is       general symptoms of ED exist, but without
17.5 or less, and severe AN is diagnosed      fitting the exact criteria for one of the
when BMI is < 15 (BMI is weight in            above diagnoses. This is the most common
kilograms divided by height in metres         form of ED identified in clinical practice.
squared). In children and adolescents,        It should be noted that EDNOS is not a
measures such as percentage weight            milder form of ED, and can be as severe
for height or BMI centiles are more           in presentation as any other diagnostic
appropriate, and growth stunting may be       category.
an indication of the disorder. It should be
noted that the weight criterion has been
removed from the definition of AN in
the Diagnostic and Statistical Manual of
Mental Disorder (DSM 5).
Eating disorder services - Joint Commissioning Panel for Mental Health
Guidance for commissioners of eating disorder services   7

WHAT ARE EATING DISORDER                       Outpatient services                                Inpatient services
SERVICES?                                      Ideally treatment is offered by                    Highly specialised 24 hour care by a
ED services are a type of specialist mental    specialist community-based services                multi-disciplinary team is necessary in
health service. They comprise teams of         close to patients’ homes. This involves            some circumstances for people with ED.
mental health professionals with training      the assessment and diagnosis of                    This includes where there is a physical
in the assessment, risk management and         patients with suspected ED and the                 health risk, where weight restoration has
treatment of individuals with AN, BN, BED      identification of physical/psychiatric             not been achieved with less intensive
and the variants thereof. The professions      comorbidity. Outpatient interventions              treatment, or where the care targets
in a team may include doctors, nursing,        include medical/risk assessment and                a particular aspect of an ED (e.g. self-
psychology, psychotherapy, dietetics,          monitoring, management of concurrent               induced vomiting, over-exercise). Some
occupational therapy, family therapy, social   physical and mental health conditions,             patients may require detention under the
work, physiotherapy and support workers.       psychoeducation, psychological (individual,        Mental health Act when it is necessary for
                                               group and family-based; guided self-               their health or safety.
Services generally offer a ‘stepped care’      help and therapist delivered therapies),
model of treatment, with more intensive        and nutritional counselling/support in             Liaison from the ED service
support offered to more severely unwell        accordance with NICE guidelines.                   Patients with ED need episodes of
patients. While most patients will receive
                                                                                                  treatment in non-specialist settings (e.g.
treatment in community services, some          Day-patient/intensive treatment packages           medical wards, general mental health
(mainly those with AN) will require an
                                               Enhanced support is offered when a                 units). Liaison with other professionals
inpatient hospital stay.
                                               patient is either not able to make changes         is therefore an important aspect of the
Specialist services for ED work closely        with lower intensity treatment, or their           specialist service. This includes advice
with general mental health services for        physical or mental health is deteriorating.        to health professionals on specific aspects
both children and adults, primary care,        Weight loss and/or increased ED                    of the management of patients with ED
voluntary sector organisations (particularly   behaviours are the most common                     and the facilitation of transfer to the
those organisations working specifically       indication for more intensive treatment.           ED service when appropriate. Refeeding
with eating disorders such as BEAT), and       Daycare is also used as a step-down from           a starving patient has to be done very
physical healthcare specialists.               inpatient treatment. Day-patient care              carefully to avoid the potentially fatal
                                               involves multi-disciplinary treatment in a         development of refeeding syndrome when
Many people with ED are living in a family
                                               specialist ED service/unit where aspects of        the process is undertaken too rapidly.
environment, and support for carers is an
                                               inpatient treatment are offered in a non-          The MARSIPAN26 guidelines were
integral part of service provision.
                                               residential setting, with patients continuing      produced due to opposing concerns about
                                               to live at home. This approach allows              the problem of under-nutrition in general
                                               patients to maintain social links. Flexible        hospitals among AN patients.
                                               and gradual reduction of attendance can
                                               also support a patient in returning to
                                               independent living.
Eating disorder services - Joint Commissioning Panel for Mental Health
8   Practical Mental Health Commissioning

Why are eating disorder services important to commissioners?

1 THE COST OF EATING DISORDERS                 2 CHALLENGES RELATING TO THE                    require repeated admissions to medical
                                                 CLINICAL CONDITIONS                           or ED beds in order to maintain safety,
Mental health problems represent up to
                                                                                               quality of life and personal recovery.
23% of the total burden of ill health in the   • ED have significant psychiatric co-
                                                                                               To maximise the quality of life for such
UK – the largest single cause of disability.     morbidity and without effective
                                                                                               patients, careful joint-working between
Nearly 11% of England’s secondary care           treatment are often chronic and long-
                                                                                               primary care, community health services,
health budget is spent on mental health.         term conditions (which can increase the
                                                                                               social services, and secondary and
Estimates have suggested that the cost           risk for a broad range of physical and
                                                                                               specialist ED mental health services may
of treating mental health problems could         mental health problems); AN tends to be
                                                                                               be required.
double over the next 20 years27.                 protracted, lasting 5-6 years on average
                                                 straddling a crucial time in a young        • some patients will be able to make
An estimated 1.5 million EU citizens
                                                 person’s development33                        incremental gains, but improvements
suffer from AN or BN, with a cost of
                                                                                               may be very modest at best, and the
illness estimate of 0.8 billion Euros per      • the prognosis for recovery is inversely
                                                                                               overall outcome measurement for
annum28,29. However, this figure severely        related to the duration of illness.
                                                                                               specialist services needs to take this into
underestimates the true costs of ED as
                                               Physical morbidity and mortality                account. Figures relating to patients
key resource items are not included (e.g.
                                               • AN has the highest mortality of any           with SEED should not be categorised
outpatient resource use), and the cost of
                                                 psychiatric illness34                         as ‘treatment failures’ but recognised
lost productivity of families and indirect
                                                                                               as inevitable due to the nature of this
costs due to reduced length of life and        • patients with ED can die from the             condition.
health are also not incorporated. These          physical consequences of severe
broader costs are much higher than the           malnutrition, or from suicide               3 CHALLENGES RELATING
healthcare costs of ED. Furthermore, the
                                               • inpatient units caring for patients with      TO CLINICAL PATHWAYS
most common ED (BED and EDNOS)
are not included in this estimate. These         severe ED must be able to offer high        Diagnostic categories
disorders are often accompanied by, or           standards of physical health care as well
                                                                                             • the majority of patients with ED
lead to, obesity30,31, and the combination       as psychiatric care.
                                                                                               will fall into the ‘Eating Disorder Not
of the two is rapidly increasing and is        Psychiatric comorbidity                         Otherwise Specified’36 category as their
projected to grow further, with a recent       • psychiatric comorbidity is the rule           disorders will be ‘atypical’ in some way.
population prevalence rise from 1% to            rather than the exception in patients         A patient with AN who has been re-fed
3.5%30,32. This is a greater increase than       with severe ED – the common                   is one example – the Body Mass Index
that for obesity or bulimic disorders alone.     comorbid diagnoses are depression,            (BMI) criterion for AN may no longer be
A 2012 review published by BEAT indicates        anxiety, obsessive-compulsive disorder,       met, but the person’s thought processes
total annual costs to the UK of £1.26bn-         personality disorder, substance misuse        may remain unchanged, putting them
£9.6bn per year. This includes annual                                                          at risk for relapse.
healthcare costs of £80-100m, costs of         • the greater the number and severity of
reduced GDP of £0.23bn-£2.9bn, and               comorbidities, the greater the challenge    • BMI alone is not a reliable indicator of
costs of reduced length of life and health       – the most appropriate treatment setting      morbidity. It is therefore important that
around £0.95bn-£6.6bn7.                          may depend on a balance of risks              services are offered according to clinical
                                                 (e.g. of self-harm versus starvation).        need, rather than diagnostic labels
                                               Severe and Enduring Eating Disorders
                                               (SEED)35                                      Transition from CAMH to adult services
                                               • a small proportion of patients (perhaps     • the majority of ED develop in
                                                 40 per million population) will have          adolescence, and if early intervention
                                                 chronic ED which produce many                 (see below) is achieved, there need to
                                                 different problems in the domains of          be agreed shared pathways for those
                                                 physical health, social functioning and       who still require the input of specialist
                                                 work as well as eating and mental             services once they reach the age of 18
                                                 health. Such patients may not be able
                                                 to recover from their ED, and some may
Eating disorder services - Joint Commissioning Panel for Mental Health
Guidance for commissioners of eating disorder services   9

• some geographical areas are served by       • the prognosis for recovery from an ED           • commissioning for the treatment of
  specialist teams across the age spectrum,     is much better if it is treated early5 (it        patients with lower severity ED, using
  but in general much more needs to be          worsens once the duration of illness              a stepped care model, would reduce
  done to avoid disruptions to care when        is past three to five years), and an              morbidity and consequently reduce the
  a young person reaches the age of 18.         early intervention model is therefore             overall cost of ED to the health service.
  Service planning, protocols and policies      appropriate for these disorders
  are often frustrated by what can be a                                                         Disruption to care pathways
                                              • early intervention needs to go
  very artificial ‘cut-off’ at age 18.                                                          • to date, commissioners have generally
                                                alongside prevention, but preventative
• commissioning arrangements need to take       work is not always commissioned,                  commissioned community treatment and
  into account the additional time required     and its effectiveness can only be                 specialist inpatient treatment together.
  for the process of transition – meetings      judged at a population, rather than               This approach supported continuity
  between adult and child services, joint       an individual level.                              of care, and that wherever possible
  assessments/handover of care, which may                                                         community-based approaches are
  take six months or more.                    4 CHALLENGES RELATING TO                            used rather than inpatient care. It also
                                                COMMISSIONING AND SERVICE                         facilitates discharge for those patients
Liaison across services                         STRUCTURE                                         who do need to come in to hospital,
                                                                                                  and to foster good working relationships
• the concomitant treatment of the            Geographical distribution of services               and communication between specialist
  psychological and multiple potential
                                              • all areas need local access to specialist         community services and inpatient units.
  physical aspects of severe ED requires
                                                community services, and although                  With new commissioning arrangements
  effective liaison across teams, services
                                                the provision has improved over the               it is paramount that NHS England and
  and organisations. There is a particular
                                                past 10 years there are still significant         local CCGs prioritise working together
  need for effective joint-working
                                                geographical variations                           to ensure appropriate integrated care
  and liaison between paediatric and
                                                                                                  pathways are commissioned.
  CAMHS for younger patients, and             • inpatient treatment is only required for
  gastroenterology services and adult ED        the most severely unwell, and therefore         • in CAMHS, care pathways are more
  teams. However many other services            the number of patients from a single              likely to be disrupted at Tier 3. CAMHS
  may also need to be involved, including       county or area requiring inpatient                are frequently commissioned and
  cardiology, rheumatology, intensive care      treatment will be small (many areas in            provided separately from Tier 4 inpatient
  and even surgery.                             England do not have access to specialist          and day-patient services. Specialist ED
                                                inpatient treatment).                             services providing both outpatient and
• there are particular issues of
                                                                                                  more intensive inpatient/day-patient
  responsibility in respect of detained
                                              Commissioning for severity                          care are rare.
  patients on medical wards. The
  Responsible Clinician role cannot be        • specialist services have a remit to work
                                                with the most severely unwell patients.         Gender distribution
  delegated temporarily to a physician
  following amendments made to the              However, this can result in patients who        • approximately 90% of patients
  Mental Health Act in 2008, and two            are showing all the signs of developing           with AN and BN are female23. The
  consultants must therefore always be          an ED not being eligible for specialist           increasing emphasis by the Care Quality
  involved, both with responsibilities,         help until the disorder is obviously              Commission and Department of Health
  and who may be working for different          manifest and perhaps entrenched.                  on single-sex accommodation has meant
  organisations.                                Commissioning on the basis of severity            that some units are now unable to take
                                                does not promote early intervention.              male patients in order to comply with
Early intervention                                                                                the standards. Male patients do not
                                              • there are many examples throughout
• early intervention requires early                                                               therefore have equal access to services,
                                                ED services of patients who have lost
  identification – increasing the awareness                                                       and they may have to travel much
                                                further weight because their BMI was
  of professionals (including training)                                                           further if they require inpatient care.
                                                not deemed low enough to warrant
  working outside of specialist ED services
                                                inpatient admission.                            • the evidence base is correspondingly
  is necessary to reduce morbidity
                                                                                                  smaller for male patients, as most
  associated with ED
                                                                                                  participants in research will also be
10   Practical Mental Health Commissioning

Why are eating disorder services
important to commissioners?                  What do we know about
                                             current eating disorder services?
5 CHALLENGES RELATING TO                     WHAT DO WE KNOW ABOUT THE                      • lower severity cases – specialist ED
  PUBLIC HEALTH AND PUBLIC                   CURRENT PROVISION OF ED SERVICES?                services are usually only commissioned
  PERCEPTION                                                                                  for moderate/severe ED. Availability
                                             • identification of cases – patients with
                                                                                              of treatment in other settings is
The anti-obesity message                       ED will usually present in primary care
                                                                                              generally very limited. This causes
• the enormous emphasis on the need            some considerable time after the onset
                                                                                              delays in accessing effective care and
  to contain and reduce obesity and            of symptoms. Factors that influence
                                                                                              most worryingly patients sometimes
  its consequences, and the public             help-seeking include: (a) ambivalence
                                                                                              lose further weight in order for their
  health messages about healthy                or denial of the problem; (b) perceived
                                                                                              difficulties to be ‘taken seriously’.
  eating and increased nutritional             and true stigma; (c) lack of patient
                                                                                              Patients usually feel undeserving of
  information on foods that is part of         understanding of the help available;
                                                                                              services which is clearly compounded
  the overall campaign, can add to the         (d) inadequate understanding of non-
                                                                                              in these circumstances.
  anguish of patients with ED. Such            specialist professionals regarding ED.
  messages also make it difficult for          On average General Practitioners (GPs)       • isolation and social exclusion – these
  those treating patients who want             will see two new patients with ED per          are often core problems for people with
  to try and get them to expand their          year of which a quarter will be managed        AN, with an estimated 25% becoming
  repertoire of foods, not exclude             exclusively in primary primary care37.         dependent on government support or
  ‘unhealthy’ ones.                            However, in the ‘pathways through              their carers38.
                                               primary care study’:
                                                                                            • carer burden – the burden of ED on
Myths and stigma                               – only 4% of GPs reported using a              carers is high4, and delays in accessing
• there are a number of stereotypes              published guideline or protocol for          appropriate treatment and support
  and myths about ED which can                   managing ED                                  increase this. If carers are unable to
  be very damaging to those with               – between 58 and 65% of GPs did not            support the person with the illness
  the condition, their families, or              use recommended BMI criterion to             effectively this may contribute to further
  professionals working with them.               guide referrals                              deterioration.
  ED are often portrayed in the
                                               – and many GPs felt dissatisfied with the    • geographic variability – the RCPsych
  media as a white, middle class,
                                                 care they are able to give to patients       have undertaken three separate surveys
  female illness resulting in the many
                                                 with ED and feel inadequately trained        of ED service provision in the UK6,39,40,
  people not in those groups feeling
                                                 in effective treatment strategies37.         each of which has identified a poor
  marginalised. It can be assumed
                                                                                              geographic availability of specialist ED
  that clinical professionals and            • critical window for intervention –
                                                                                              services, with patients outside of London
  commissioners are also influenced            for patients with a relatively recent
                                                                                              (where services are concentrated) often
  by widespread misunderstanding               onset of ED, the first 3-5 years represent
                                                                                              having to travel long distances from
  and stigma regarding ED. Certain             a critical window for intervention –
                                                                                              home for treatment. While new services
  professions prize thinness to an             after this period, the likelihood of
                                                                                              have developed since 2000, many of
  extent which can increase the                recovery is reduced5.
                                                                                              these do not fulfil the criteria for a
  likelihood of developing an ED in
                                                                                              specialist service, and raise questions
  order to gain entry, and everyone
                                                                                              about the adequacy of specialist
  is bombarded with media images
                                                                                              provision in some areas. The number of
  of physical perfection, which are
                                                                                              specialist consultant psychiatrists remains
  often manipulated.
                                                                                              significantly below that recommended
                                                                                              which has implications for the quality of
                                                                                              care provided.
Guidance for commissioners of eating disorder services   11

SPECIALISED TREATMENT FOR                        SPECIALIST CARE PATHWAYS                          2 Specialist outpatient child and
EATING DISORDERS IS NECESSARY                    – CAMHS                                             adolescent ED service
• ED are associated with high levels of          There is a considerable variability in the        The second referral route is to a specialist
  morbidity (psychological, physical and         treatments provided for children and              outpatient child and adolescent ED
  social) and AN has the highest mortality       adolescents with AN. There are essentially        service (CAEDS). These are dedicated
  of any psychiatric disorder34                  two main care pathways available:                 multi-disciplinary services covering a
                                                                                                   larger geographical area than a single
• people with AN do not improve                  1. Primary care to local CAMHS                    CAMH service.
  spontaneously – studies where people           The first and most common care pathway
  have been made to wait for treatment                                                             Although these have been growing in
                                                 is from primary care to a local CAMH
  indicate that their condition either                                                             number in recent years they are still
                                                 service. Such CAMHS often have varying
  remains unchanged or deteriorates41,42                                                           relatively rare in the UK. Some CAMH
                                                 levels of expertise in ED and may have a
                                                                                                   services have developed expertise and
• critically, one of the predictors of           variable mix of treatments available.
                                                                                                   have “mini-specialist ED teams”, who
  relapse/recovery is treatment in a             Because of the potentially life-threatening       offer a treatment provision for eating
  general setting where recovery rates           nature of AN, a significant proportion            disorders in some ways more like that of
  are lower and relapse risk is higher           of people will be, at some point, offered         the specialist ED service than of a generic
  than treatment in a specialised clinic43       treatment in hospital. National figures           CAMHS, but within a single borough. The
  – delaying access to specialist treatment      suggest admission rates of over 35% for           establishment of a specialist CAEDS has
  increases long-term health costs               adolescents44 and over 50% for younger            been reported to reduce rates of admission
• inpatient treatment is necessary when          patients45, while one survey of child and         to hospital by as much as 60-80%47.
  less intensive treatment options are not       adolescent psychiatric bed use found that
  effective, or if medical or psychiatric risk   more beds were occupied by young people
  indicate the need – partly depending on        with eating disorders, than any other
  clinical need and availability of specialist   diagnostic group46.
  beds, patients with ED are currently           Although some admissions (e.g. those
  admitted to a variety of clinical settings     to paediatric wards) can be brief, most
  including paediatric wards, CAMH               admissions are long, with durations of
  units, acute medical wards, adult mental       stay commonly between six months and
  health units, and specialist ED units          one year and in some cases considerably
• many areas in England do not have              longer. Where residential treatment
  access to specialist inpatient beds,           has been the main intervention there is
  and as a result care pathways become           evidence that the risk of relapse is high;
  fragmented for the most severe and             25-30% after the first admission and
  complex cases.                                 60-75% for second or further
                                                 admissions3,4,5. Treatment in hospital is
                                                 most often in general child or adolescent
                                                 inpatient units, some of whom have
                                                 developed expertise in the area, and less
                                                 frequently specialist inpatient ED services
                                                 (mostly in the private sector).
12   Practical Mental Health Commissioning

What would a good eating disorder service look like?

This section covers six                      1 EATING DISORDER SERVICES FOR                 More recently a study on care pathways
key areas:                                     CHILDREN AND ADOLESCENTS                     in London found that in areas where
                                                                                            specialist child and adolescent outpatient
                                             Evidence for effective treatments
1 ED services for children                                                                  ED services were established, 2-3
                                             As summarised below, the evidence
  and adolescents                                                                           times the number of adolescents with
                                             suggests that:                                 anorexia nervosa and EDNOS-AN were
2 ED services for adults                     • specialised outpatient family                identified in services beyond primary
                                               interventions are highly effective in        care, compared to those areas with only
3 additional considerations
                                               treating child and adolescent ED             non-specialist CAMHS48. Those patients
  for commissioners                                                                         who commenced treatment in a non-
                                             • specialised services (including specialist   specialist CAMHS had 2.5 times the rate
4 other service components                     mini-teams within CAMHS) can                 of admissions for inpatient treatment
5 service standards                            significantly reduce the need for            during the following 12 months than those
                                               inpatient care                               initially treated in a specialist service; and
6 service outcomes.                                                                         80% of those seen in specialist services
                                             • in areas where there is direct access to
                                               specialised outpatient services there        received continuous care without any need
                                               is significantly better identification of    for further referrals, as compared to 42%
                                               young people who require treatment           of patients in non-specialist care.

                                             • specialised outpatient services manage       Even with the best outpatient care, more
                                               the majority of cases themselves without     intensive treatment (in paediatric wards,
                                               the need for further referrals, providing    general and specialist psychiatric inpatient
                                               a consistency of care                        and/or day-patient facilities) is required
                                                                                            in up to 20% of patients48. Paediatric
                                             • more intensive treatment may be
                                                                                            admissions for ED tend to be shorter than
                                               required in up to 20% of cases48 –
                                                                                            those to psychiatric inpatient facilities, and
                                               this includes admission to paediatric
                                                                                            may divert the need for lengthy inpatient
                                               wards, day care, admission to general
                                                                                            psychiatric admissions. Management
                                               adolescent psychiatric units and/or
                                                                                            on paediatric wards varies a great deal.
                                               specialist ED services.
                                                                                            In some centres, particularly those with
                                             Clinical trials suggest that family-based      specialist ED teams, clear pathways and
                                             therapies conducted on an outpatient           protocols exist, but in many places this is
                                             basis are effective49, and have excellent      not the case, leading to inadequate and
                                             long-term outcomes50,51. These therapies       sometimes inappropriate management.
                                             are recommended in clinical guidelines23.      The Royal College of Psychiatrists report,
                                             The relapse rates for those who have           Junior MARSIPAN: Management of really
                                             responded well to outpatient family            sick patients under 18 with Anorexia
                                             therapy are significantly lower (5-10%)        Nervosa, provides guidance around these
                                             than those following inpatient care52,         issues26. ED day programmes have more
                                             and there is some evidence that long-term      recently been established but the evidence
                                             admission may have a negative impact on        for these has yet to be established.
                                             outcome53, as well as being more costly54.
                                             While one study (TOUCAN) showed no
                                             significant difference in outcome between
                                             specialist individual interventions and
                                             general CAMHS, in this study specialist
                                             family therapy was not offered53.
Guidance for commissioners of eating disorder services   13

Service organisation                            Paediatric liaison                                  Psychiatric inpatient/day-patient care
The previous section highlights the             Patients with ED are at high risk of medical        More intensive psychiatric treatment will
advantages of organising specialist ED          complications. If there is an aim to reduce         be required for a minority of patients
services for children and adolescents in a      the need for more lengthy psychiatric               who (a) deteriorate despite paediatric
way that enables easy access to outpatient      inpatient admissions, such risk cannot              admissions, and/or (b) where they
services with specific expertise directly       be managed within outpatient services               have not responded well to outpatient
from primary care. The components of a          without clearly defined support and back-           treatment, and where the risk cannot be
specialist service have been defined as6:       up being provided by paediatric/medical             safely held in an outpatient setting24.
                                                facilities. The provision of paediatric care
1 a service receiving a minimum of                                                                  These are often young people with
                                                has to be included in planning specialist
  25 new ED referrals per year                                                                      more complex illnesses (e.g. significant
                                                outpatient services. It is recommended
2 a multi-disciplinary team, including                                                              comorbidity such as obsessive compulsive
                                                that a ‘Junior MARSIPAN group’ is set up
  medical and non-medical staff                                                                     disorder, depression, developmental
                                                to ensure clear pathways and protocols
                                                                                                    disorders), or from families where there is
3 more than one person with experience          for the management on the paediatric
                                                                                                    limited support for the young person (e.g.
  of treating ED                                wards55. Paediatric admissions will be for
                                                                                                    because of parental mental health, chaotic
4 a team with the expertise to deliver          those at acute medical risk to stabilise the
                                                                                                    or abusive relationships).
  recommended treatments (assessment            physical state. Care should be provided
  of physical risk and psychological            jointly by psychiatric eating disorder and          A proportion of these young people
  therapies including family therapy) and       medical/paediatric teams.                           may require treatment under the Mental
  the resources to offer routine outpatient                                                         Health Act. This more intensive treatment
  treatment.                                    Need for close liaison with                         should be provided by day or inpatient
                                                child health services                               services that have specific expertise in the
The specialised team should be able to                                                              management of severely ill adolescents
                                                Eating disorders have potentially
provide:                                                                                            with ED, and can provide evidence-based
                                                serious short and long-term physical
1 family therapy for ED                         consequences. For pre-pubertal children,            treatment. This may be within a specialist
                                                and for those who have not yet completed            ED unit or on a general adolescent
2 child and adolescent psychiatric
                                                puberty, the condition affects growth,              psychiatric unit, on the condition that
                                                and the successful completion of puberty.           staff have experience in managing
3 other evidence-based psychological                                                                these patients on a regular basis. Where
                                                For older adolescents, there are potential
  interventions (e.g. CBT)                                                                          patients are referred outside of the service,
                                                problems with bone density and fertility.
4 access to dietetic advice                     More severely underweight patients are at           outpatient services need to establish
5 medical assessment and monitoring             risk of significant nutritional deficiencies,       close links with these facilities to ensure
6 rapid response to referrals, usually within   oedema, poor wound healing and                      continuity of care, and to limit the need for
  1-2 weeks, maximising the chance of           infections. Rarely, other serious medical           lengthy admissions.
  avoiding inpatient treatment.                 conditions, such as inflammatory bowel
                                                disease, can be mistaken for anorexia.
Whilst these can be provided within a
                                                It is therefore important that ED services
‘mini-team’ in a CAMH service there
                                                for children and adolescents work
may be an advantage to develop larger
                                                closely with primary care, child health
teams with a greater breadth of skills and
                                                (especially general paediatrics), dietetics,
knowledge. These are not as vulnerable to
                                                endocrinology and gastroenterology.
staff turnover and variation in numbers
                                                At present this liaison work is patchy in
of referrals.
                                                many areas and needs to be developed.
                                                Diabetic patients with ED are particularly
                                                complicated and close working between
                                                GPs, diabetic and ED teams is important.
14   Practical Mental Health Commissioning

What would a good eating disorder service look like? (continued)

2 EATING DISORDER SERVICES                       (SRSH), Succeed Foundation, Anorexia and       • high quality evidence-based
  FOR ADULTS                                     Bulimia Care (ABC), and Diabetics with           psychological therapies for BN and
                                                 Eating Disorders (DWED). A high quality          BED (guided self-help-BN/BED;
Anyone with an ED in England should have
                                                 comprehensive ED service would have              Cognitive Behavioural Therapy CBT-BN,
access to a comprehensive multi-disciplinary
                                                 integrated care pathways from identification     CBT-BED). In the absence of a strong
ED service. This service must have the
                                                 through to inpatient treatment with              evidence base for specific psychological
resources and expertise to offer assessment
                                                 commissioning to support patients moving         therapies for AN, services should be
of the full range of ED (AN, BN, EDNOS
                                                 flexibly between different components of         able to provide a range of psychological
and BED). This service may also have the
                                                 care depending on clinical need.                 therapies in line with best practice (e.g.
expertise to develop specific interventions
                                                                                                  SSCM, CBT, Cognitive Analytic Therapy,
for the management of patients with
                                                 Community eating disorder services               psychodynamic psychotherapy). Family-
obesity if appropriately funded.
                                                 (CEDS)                                           focused psychological interventions
Clear referral protocols and care pathways       The majority of patients with an ED should       should also be widely available.
should be agreed between ED services,            be managed in the community close to           • intensive community treatment for
referrers and commissioners. Patients with       their home. A community ED service               patients whose condition is deteriorating
less severe ED should have timely access to      should be able to provide the following:         or not progressing.
ED services. This is particularly important
as we know that a proportion of these            • comprehensive psychiatric assessment to      • collaboration with carers/family
patients will develop more severe and/             include ED psychopathology and identify        with careful consideration of patient
or enduring illness, and that this is more         comorbid mental health and physical            confidentiality. Carers’ needs assessment
likely if they are denied access to specialist     conditions. Diagnosis should be discussed      should be offered, and appropriate
treatment. Early intervention will reduce          with patient, carer and referrer.              advice and support available in addition
the morbidity and mortality associated           • risk assessment, both psychiatric and          to family-based interventions such
with ED. Currently this initial step in the        physical. This will include organising         as carers’ support groups and family
care pathway is unsatisfactory. Lower              relevant investigations (e.g. blood            therapy delivered both to individual
severity cases may be seen in primary              tests, ECG, bone densitometry). Clear          families and multi-family therapy.
care or secondary mental health services           arrangements should be made with a           • nutritional counselling and
depending on local arrangements. There             patient’s GP agreeing responsibility for       psychoeducation with the aim of
is a need for specialist input at this stage       ongoing physical health monitoring.            restoring healthy, balanced eating.
of the pathway to ensure identification of
cases and optimal access to appropriate          • advice to referrer to include: 1)            Resources should also be available for the
treatment using a stepped care model.              assistance in making a diagnosis; 2)         development of innovative interventions
                                                   management of physical and mental            and care pathways particularly for SEED
The voluntary sector also have an important        health; 3) SSRIs in BN and BED,              and ED complicated by features of
role in offering advice and support to             treatment of comorbid depression,            borderline personality disorder. There is
patients and their families/carers. BEAT is        anxiety disorder, OCD and psychosis.         a paucity of evidence in the treatment of
a national charity for people with ED that         Vitamins and nutritional supplements         these conditions and they carry a high level
provides help both through telephone/              should also be considered; 4) when to        of health burden, physical and psychological
internet-based helplines and local support         refer to CEDS.                               sequelae, carer burden and cost.
groups for patients and carers. There are
many other charities and patient-led services    • a patient-centred, non-judgemental
that offer support to people with ED. These        approach utilising motivational
include First Steps, Student Run Self Help         interviewing in order to maximise
                                                   engagement of patients where
                                                   ambivalence or denial of the difficult
                                                   aspects of ED are known to influence
                                                   patients experience of care and
Guidance for commissioners of eating disorder services   15

Specialist day hospital/inpatient               • facilitated joint-working with the           Patients who do not fall into these categories
treatment                                         CEDS with the aim of robust relapse          should be offered treatment at a specialist
Referral to a specialist inpatient or day-        prevention planning and discharge            ED service. Some areas of England have
patient service should be considered in the       arrangements.                                no access to a specialist ED service, and
following circumstances:                                                                       others are not able to offer admission when
                                                Most patients with an ED requiring
                                                                                               it is needed due to shortage of beds at a
• crisis admission – where there is             inpatient treatment should be admitted
                                                                                               specialist ED service. Improved access to
  high medical or psychiatric risk              to a specialist ED service. However,
                                                                                               specialist treatment across England through
  associated with an ED (e.g. severely          in certain circumstances, alternative
                                                                                               the development of new specialist ED
  low BMI, rapid weight loss of >0.5kg/         inpatient facilities may be deemed
                                                                                               services, and increased capacity in existing
  week regardless of BMI, physical              more appropriate:
                                                                                               specialist ED services, should be a priority for
  complications of low weight or other          • acute medical unit – if physical health      commissioners of comprehensive ED services.
  ED behaviours, suicide risk)                    risk is unstable and cannot be safely
• symptom recovery – for patients who             managed in the ED service. This is           Outcome measures
  have been admitted in crisis, or for those      most common in severe low weight,            All ED services should conduct outcome
  with low BMI who have been unable               where there is rapid weight loss,            monitoring. As a minimum the following
  to make progress despite appropriate            complications of refeeding syndrome or       should be recorded:
  community treatment                             when electrolyte abnormalities occur in
                                                  the context of self-induced vomiting.        • HONOS56 (ED specific glossary
• social inclusion recovery model –               Other medical complications can also           developed by multi-disciplinary group
  to address a particular aspect of a             occur. Management on the medical               RCPsych) or HONOSCA57
  patient’s ED such as persistent self-           unit may include cardiac monitoring,         • ED symptoms (EDEQ58)
  induced vomiting, excessive exercising,         intravenous infusion and other aspects       • weight and Body Mass Index
  food avoidance and obsessional or               of high dependency care. Management
  phobic behaviours related to food,                                                           • a measure of patient satisfaction/
                                                  of the behavioural and psychological
  weight or eating                                                                               carer satisfaction.
                                                  aspects of ED should also be addressed
• respite – time-limited admissions may           by providing one-to-one ED specialist        Potential risks associated with new
  be necessary for weight stabilisation,          nursing for the duration of the              commissioning arrangements
  and to address social and occupational          admission. Funding arrangements should
                                                                                               Commissioners and providers must be
  issues in patients with SEED.                   be in place to avoid potentially harmful
                                                                                               aware of the challenges posed by new
                                                  delays. MARSIPAN guidelines should be
Inpatient/day-patient treatment should                                                         commissioning arrangements for ED
                                                  adhered to throughout this process with
comprise all components of care offered in                                                     services. Separate funding streams for
                                                  regional MARSIPAN policies in place.
CEDS in addition to:                                                                           community ED services and specialist ED
                                                • general psychiatric unit – in rare           services could have a negative effect on
• a high quality intervention aimed at            situations, patients with co-morbid          patient experience, clinical outcomes and
  weight restoration or medical stabilisation     psychiatric problems may be admitted         cost-effectiveness. Commissioners of ED
  or the reduction of severe or resistant         to generic mental health wards if the        services should have a commitment to:
  behaviours associated with the ED               needs of these patients would be
                                                                                               • preventing delays/disruption to patient
• skilled refeeding with access to                either more appropriately or safely
                                                                                                 care due to funding arrangements
  parenteral feeding when needed                  met in this setting. For example, if a
                                                  patient’s aggressive or suicidal behaviour   • avoiding delays to accessing inpatient
• a high quality daily group programme
                                                  merits more intensive psychiatric care         treatment as admission at lower weight
• appropriate utilisation of the Mental           and prevents engagement with the               is associated with longer admission – a
  Health Act where risk from low weight,          therapeutic groups on ED services.             move towards earlier admission for
  compensatory behaviours or other forms          Liaison support should be provided from        shorter periods may improve long-term
  of self-harm deem it necessary                  the ED service regarding management            outome and cost-effectiveness
                                                  of the ED, and rapid transfer of the
                                                  patient when appropriate.
16   Practical Mental Health Commissioning

What would a good eating disorder service look like? (continued)

• ongoing development and maintenance           3 ADDITIONAL CONSIDERATIONS                     consideration involving all parties as to
  of integrated care pathways between                                                           where treatment would best be provided.
                                                Liaison with other agencies for children
  service components and providers                                                              This may mean returning to be near
                                                and adolescents
                                                                                                to family or other support networks. A
• maintaining flexibility and flow              Systems for liaison with other agencies,        House of Commons debate suggested
  between different service components          such as education and local authorities,        that a patient’s home GP should retain
  (community, daycare, inpatient)               need to be in place. Education, for             clinical and financial responsibility59. This
• funding intensive community treatment         example, can be severely compromised by         will need, however, clear communication
  as an alternative to admission or as a        long-term illness such as AN, and it may        between the home GP and the GP with
  step-down from inpatient treatment –          be necessary to involve the local authority     whom a patient temporarily registers
  there is a risk that this vital step in the   in cases where there are concerns that          whilst studying. Students should also
  pathway may be compromised                    parents are unable to meet the child’s          be able to register with 2 ED services,
                                                long-term health needs. This may be             one at home and one at their place of
• consider ‘high cost, low volume’ patients     particularly relevant in those who need         study to ensure appropriate care during
  rather than service components. In            protracted or multiple admissions.              term-time and holiday59. Commissioning
  the absence of an evidence base for
                                                                                                and providers should support creative
  patients with SEED, services should be        Age and transitions                             and flexible arrangements to ensure the
  commissioned to develop innovative
                                                Consideration must be given to supporting       provision of optimal specialist care.
  care packages for these patients which
                                                the development of age-appropriate
  may span community, day and inpatient
                                                services, particularly as we are seeing         Gender
  components. Continuity of therapeutic
                                                a rise in early-onset ED (
Guidance for commissioners of eating disorder services   17

is higher in young Asian females compared      Carer/family involvement                           Weight loss in the absence of ED
to other ethnic groups61, and the incidence    The role of carers should be supported             Eating disorder specialists are skilled in
of ED is increasing at the highest rate in     and utilised within ED services following          the assessment of patients where the
this ethnic group, yet this is not reflected   the principles of the Triangle of Care64.          primary cause of weight loss may not be
in the cases being referred to, and            The active involvement of carers early in          an ED. Low weight may be identified as a
treated by, specialist services. Therefore,    treatment can enhance engagement and               consequence of other mental or physical
consideration should be given to supporting    improve outcomes for patients and their            illness. In these cases there may be an
the development of culturally appropriate      carers. Eating disorder services should            element of ED psychopathology, or body
ED services in the future.                     have a carers’ lead who is responsible for         image disturbance may have developed as a
Training                                       co-ordinating information and support              result of weight loss and disordered eating.
                                               for carers. Issues of confidentiality should       Medically unexplained symptoms relating
Good collaboration and communication
                                               be addressed throughout treatment. It is           to weight and eating have the potential
between services and tiers throughout
                                               paramount that patients, staff and carers are      to use significant resources in primary
the care pathway for ED is paramount62
                                               fully informed in issues of confidentiality, and   and secondary care, and a specialist ED
and in this way we can support a truly
                                               are able to balance the importance of trust        assessment can avoid unnecessary treatment
integrated model of care. Up to 20%
                                               with considerations of safety.                     or investigations. Specialist advice on the
of all AN and 40% of all BN is treated
                                                                                                  safe refeeding and management of the
exclusively in primary care63. However, we
                                               4 ADDITIONAL SERVICES                              psychological sequelae can also improve
know that skilled early intervention has a
                                                                                                  clinical outcome.
significant beneficial effect on the course    Eating disorder services have considerable
of AN62. Therefore, creating resources         expertise that could be utilised in the
                                                                                                  5 QUALITY STANDARDS
within specialist ED services to provide       management of other conditions (if
wider training to other professionals          appropriately funded).                             Commissioners should commission
around screening and appropriate referral                                                         ED services that can demonstrate that
on to secondary care, and also awareness       Obesity                                            they meet the recognised standards for
initiatives with partner agencies such as      Specialist ED services can offer a range           their service.
education and also ethnic minority groups,     of interventions for patients with obesity.
should be considered. This will ensure         These include:                                     NICE
that the expertise from specialist teams                                                          Key priorities for implementation were
                                               • assessment of (a) eating patterns
can be effectively used to support primary                                                        identified in guidance published in 200424.
                                                 and existence of BED; (b) psychiatric
care, non-specialist services, education,                                                         The recommendations were as follows:
                                                 comorbidity; (c) psychological mechanisms
social care and other agencies to work in
                                                 underpinning abnormal eating behaviours;         Anorexia
partnership with specialist services towards
                                                 (d) additional impulsive behaviours or           • most patients with AN should be managed
a truly integrated approach.
                                                 borderline personality traits; (e) motivation      on an outpatient basis with psychological
                                                 for weight loss                                    treatment provided by a service
                                               • pre-bariatric surgery assessment – as              competent in treatment and assessment
                                                 above, the presence of BED will inform             of physical risk
                                                 choice of surgical procedure. Psychiatric        • patients requiring inpatient treatment
                                                 comorbidity should be treated prior                should be admitted to a service skilled
                                                 to surgery as associated with poorer               in the implementation of refeeding
                                                 outcome. Impulsive behaviours increase             and physical monitoring as well as
                                                 the risk of alternative maladaptive                psychosocial interventions.
                                                 behaviour developing post-surgery.
                                               • psychological therapy – there is increasing
                                                 interest in the development of innovative
                                                 psychological interventions as an alternative
                                                 to, or to complement, bariatric surgery.
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