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Guidance for commissioners of eating disorder services 1 Joint Commissioning Panel for Mental Health www.jcpmh.info Guidance for commissioners of eating disorder services Practical mental health commissioning
2 Practical Mental Health Commissioning Contents Ten key messages Introduction What are eating Why are eating for commissioners disorder services? disorder services important to commissioners? 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
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.
4 Practical Mental Health Commissioning Introduction 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 (www.jcpmh.info) 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.
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 understand: 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 WHO IS THIS GUIDE FOR? 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.
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).
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.
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 alone. 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
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 female.
10 Practical Mental Health Commissioning Why are eating disorder services important to commissioners? What do we know about (continued) 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 assessment 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 outcomes.
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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