Summary of Junior MARSIPAN: Management of Really Sick Patients Under 18 with Anorexia Nervosa

CR168s Summary of Junior MARSIPAN: Management of Really Sick Patients under 18 with Anorexia Nervosa

COLLEGE REPORT College Report 168s

October 2015

Approved by: Policy and Public Affairs Committee (PPAC), November 2014

Due for revision: 2016

College Reports constitute College policy. They have been sanctioned by the College via the Policy and Public Affairs Committee (PPAC).

For full details of reports available and how to obtain them, visit the College website at http://www.rcpsych.ac.uk/publications/ collegereports.aspx

The Royal College of Psychiatrists is a charity registered in England and Wales (228636) and in Scotland (SC038369). Contents

Authors 2 Key recommendations 3 Risk assessment: how ill is the patient? 4 Location of care 9 Management in specific healthcare settings 11 Management in specialist eating disorders beds 18 Audit and review 20 Resources and further guidance 21 References 22

Contents 1 Authors

The authors of this report are multidisciplinary, Dr Jane Whittaker, Consultant Child and independent, and have no conflicts of interest to Adolescent Psychiatrist, Manchester Children’s declare relating to the report. Hospital, Manchester

Dr Agnes Ayton, Consultant Psychiatrist, Dr Damian Wood, Consultant Paediatrician, Cotswold House, Oxford Chair of the Royal College of Paediatrics and Child Health’s Young People’s Health Special Dr Rob Barnett, General Practitioner, Liverpool Interest Group, Nottingham University Hospital, Dr Mark Beattie, Consultant Paediatric Nottingham Gastroenterologist, Southampton General Hospital, Southampton Organisations that Dr Barbara Golden, Specialist Paediatrician, Honorary Senior Lecturer in Nutrition, University endorse CR168 of Aberdeen, Aberdeen BEAT Dr Lee Hudson, Consultant Paediatrician, Feeding and Eating Disorders Service, Great Ormond British Paediatric Mental Health Group Street Hospital, London British Society of Paediatric Gastroenterology, Ms Sarah Le Grice, Specialist Paediatric Dietician, Hepatology and Nutrition Royal Stoke University Hospital, Stoke-on-Trent Faculty of Eating Disorders, Royal College of Dr Colin Michie, Consultant Senior Lecturer in Psychiatrists Paediatrics, Ealing Hospital, Southall Nutrition Group of the Royal College of Paediatrics Dr Gail Moss, Consultant Paediatrician, Sheffield and Child Health Children’s Hospital, Sheffield Royal College of Psychiatrists

Dr Dasha Nicholls, Consultant Child and Young People’s Special Interest Group, Royal Adolescent Psychiatrist, Feeding and Eating College of Paediatrics and Child Health Disorders Service, Great Ormond Street Hospital, London

Dr Graeme O’Connor, Specialist Dietitian, Feeding Acknowledgements and Eating Disorders Service, Great Ormond With thanks to Dr Simon Chapman, Ms Sarah Street Hospital, London Cawtherley and Dr Sarah Ehtisham for comments Dr Paul Robinson, Consultant Eating Disorders on this summary. Psychiatrist, St Ann’s Hospital Eating Disorders Service, London

Dr Francine Verhoeff, Consultant General Paediatrician, Alder Hey Children’s Hospital, Liverpool

2 College Report 168s Key recommendations

1 All health professionals should be aware that 7 The key tasks of the in-patient paediatric/ anorexia nervosa is a serious disorder with medical team are to: life-threatening physical and psychological {{ safely re-feed the patient, avoiding re-feed- complications, and patients require the same ing syndrome or underfeeding level of care and should be subject to the {{ manage, with CAMHS support, the same emergency protocols as a child with behavioural manifestations of anorexia any other serious illness. nervosa 2 Some risk parameters need to be adjusted for {{ use appropriate legal frameworks to treat age and gender, including body mass index patients under compulsion if needed (BMI). {{ arrange appropriate transfer to CAMHS 3 Parents/carers play a central role in care and as soon as it is safe to do so. decision-making until the patient is 18 years of 8 Health commissioners should: age, with increasing autonomy for the young person according to age, developmental {{ commission adequately resourced acute stage and capacity. paediatric services and appropriately skilled mental health services for the care 4 The role of primary care is to monitor patients of young people with anorexia nervosa and refer early to specialist services. {{ support joint working between services 5 A lead consultant paediatrician and a lead (e.g. fund CAMHS nursing staff during consultant psychiatrist should be identified to admission) coordinate care for Junior MARSIPAN patients and build working partnerships and develop {{ be aware of gaps in local resources and protocols to support admission, including pro- support referral to national centres for tocols for transition for young people 16–18 advice or treatment when necessary. years of age. 6 The clinical condition of the patient, the quality of liaison between paediatric and child and adolescent mental health services (CAMHS) eating disorder services and the clinican’s experience in managing malnutrition should be the primary factors in deciding appropriate location of care.

Key recommendations 3 Risk assessment: how ill is the patient?

Risk assessment combines clinical assessment underlying physical illness, it is important not to with investigations, assessment of motivation and delay re-feeding. engagement with treatment plans, and available Cardiologists increasingly use the ‘tangent method’ parent or carer support to determine the risk of to calculate the QTc interval (Postema et al, 2008). serious complications to a young person. For A tangent is drawn to the steepest slope of the example, some (but not many) people are healthy last limb of the T wave in lead II or V5. The end of and menstruating at low weights, and medi- the T wave is the intersection of the tangent with cally unstable patients can be a normal weight. the baseline. QTc is defined as QT/√RR (Bazett’s Behaviours associated with eating disorders are formula; Fig. 1). often covert, and children and pre-pubescent adolescents can present with atypical features. The Sick children and adolescents with eating disorders risk assessment framework presented in Table who need admission require the same level of 1 is intended as a guide to level of concern. The care as with any other serious illness. Decisions rationale for the parameters can be found in the about cardiac monitoring and admission to a full Junior MARSIPAN report (Royal College of high-dependency unit or psychiatric intensive care Psychiatrists, 2012a). The framework can be used unit are made by the admitting team. A sick child to assess and grade concern, but are not a sub- with an eating disorder needs senior paediatric stitute for assessment by an experienced clinician. review on admission and at least daily if there are paediatric (medical) issues. Eating disorders are relatively common, but many of the possible differential diagnoses are Physical assessment parameters and actions to not. If, after a careful clinical history, examina- take are presented in Table 2. tion and initial investigations, there is no obvious

RR interval

Tangent

T P U

Lead II or V5

Baseline

QRS QTc = QT / √RR (sec) QT

Fig. 1 Calculating the QTc interval. Reproduced with permission from Postema et al (2008).

4 College Report 168s ms ms 450 430 bpm 60 85% (~above 9th a 15 years: QTc 15 years: QTc 15 years: QTc < 15 years: QTc 15 years: QTc < 15 years: QTc % median BMI > BMI centile) No weight loss over past 2 weeks Not clinically dehydrated All patients < < 440 ms Females > Males > Heart rate (awake) > Normal orthostatic cardiovascular Normal orthostatic cardiovascular changes Normal heart rhythm for Normal sitting blood pressure to age and gender with reference centile charts • • • Blue (low risk) • • • • • • • ms bpm

g/week for 2 5%): dry 500 ) a ) 440– 15 years: QTc a 15 years: QTc 450– 15 years: QTc 15 years: QTc 430–450 15 years: QTc % median BMI 80–85% (~between 9th and 2nd BMI centile) Recent loss of < consecutive weeks Heart rate (awake) 50–60 symptoms but Pre-syncopal normal orthostatic cardiovascular changes Sitting blood pressure: – systolic <2nd centile (88–105mmHg Fluid restriction Mild dehydration (< mouth or not clinically dehydrated but with concerns about risk of dehydration with negative fluid balance All patients < 460 ms Females > 460 ms Males > And taking medication known to interval, family history QTc prolong or sensorineural QTc of prolonged deafness Cool peripheries. Prolonged Cool peripheries. Prolonged time peripheral capillary refill time) (normal central capillary refill – diastolic <2nd centile (40–45mmHg • • • • • • • • • • Green (moderate risk) Green • • , c ms ms 460 bpm

450

10 mmHg 500–999 g/week 15 mmHg, or )

a 15 years: QTc 15 years: QTc 30 bpm) 15 years: QTc > 15 years: QTc 15 years: QTc > 15 years: QTc min of standing, or in Heart rate (awake) 40–50 Moderate orthostatic changes (in cardiovascular systolic BP of ≥ diastolic BP fall of ≥ within 3 heart rate ≤ Occasional syncope Sitting blood pressure: – systolic <0.4th centile (84–98 mmHg) – diastolic <0.4th centile (35–40 mmHg % median BMI 70-80% (~between 2nd and 0.4th BMI centile) Recent loss of ≥ for 2 consecutive weeks Severe fluid restriction fluid Severe Moderate dehydration (5–10%): urine output, dry reduced some mouth, normal skin turgor, tachypnoea, some tachycardia peripheral oedema All patients < > 460 ms Females > Males > • • • • • • • • • • • Amber (alert to high concern) ms ms 460 450 bpm 10%): 40 70% (~below 1 kg for 2 20 mmHg, or in 15 years: QTc 15 years: QTc 15 years: QTc > 15 years: QTc 15 years: QTc > 15 years: QTc Marked orthostatic changes (in systolic BP of ≥ heart rate > 30 bpm) syncope History of recurrent heart rhythm (does not Irregular include sinus arrhythmia) Heart rate (awake) < 0.4th BMI centile) Recent loss of ≥ consecutive weeks % median BMI < reduced urine output, dry mouth, reduced sunken skin turgor, decreased eyes, tachypnoea, tachycardia Fluid refusal dehydration (> Severe With evidence of bradyarrhythmia or tachyarrhythmia (excludes and sinus sinus bradycardia arrhythmia); ECG evidence of biochemical abnormality Males > All patients < > 460 ms Females > • • • • • • • • • • Red (high risk) • • b Risk assessment framework for patients with anorexia nervosa <18 years old Risk assessment framework for patients with anorexia Cardiovascular Cardiovascular health Body mass Hydration status Table 1 Table ECG abnormalities

Risk assessment: how ill is the patient? 5 No uncontrolled exercise No uncontrolled Some insight into eating motivated to tackle problems, ambivalence eating problems, to gain changes required towards in behaviour weight not apparent – – • • – – Blue (low risk) –

(<1 h/day) Mild levels of uncontrolled Mild levels of uncontrolled in the context of exercise malnutrition Some insight into eating some motivation problems, to tackle eating problems, changes ambivalent towards to gain weight but not required actively resisting Moderate restriction Bingeing – – • • • • – Green (moderate risk) Green – 50% of

C o Other major psychiatric co- diagnosis (e.g. obsessive– psychosis, compulsive disorder, depression) Cutting or similar behaviours Suicidal ideas with low risk of completed suicide Moderate levels of uncontrolled Moderate levels of uncontrolled in the context of exercise malnutrition (>1 h/day) Poor insight into eating problems, Poor insight into eating problems, lacks motivation to tackle eating to changes resistance problems, to gain weight required unable to implement Parents meal-plan advice given by providers healthcare Severe restriction ( ≤ restriction Severe intake) required Vomiting Purging with laxatives Hypophosphataemia, hypokalaemia, hyponatraemia, hypocalcaemia < 36 • • • • • • • • • • Amber (alert to high concern) •

kcal/day

C (tympanic) or o C (axillary) o Self-poisoning Suicidal ideas with moderate–high risk of completed suicide High levels of uncontrolled High levels of uncontrolled in the context of exercise malnutrition (>2 h/day) Violent when parents try to limit Violent when parents behaviour or encourage food/fluid intake to violence in relation Parental feeding (hitting, force-feeding) Acute food refusal or estimated Acute food refusal calorie intake 400–600 < 35.5 Hypophosphataemia, hypokalaemia, hypoalbuminaemia, hypoglycaemia, hyponatraemia, hypocalcaemia 35.0 – • • • • • • • • Red (high risk) continued Other mental health diagnosis Self-harm and suicide Activity and exercise Engagement with management plan Disordered Disordered eating behaviours Temperature Temperature Biochemical abnormalities Table 1 Table

6 College Report 168s Sits up from lying flat without any Sits up from 3) difficulty (score Gets up without any difficulty 3) (score – • • Blue (low risk)

Poor attention and concentration flat without noticeable difficulty 2) (score Unable to sit up from lying Unable to sit up from Unable to get up without 2) noticeable difficulty (score • • • Green (moderate risk) Green

Mallory–Weiss tear Mallory–Weiss or reflux Gastroesophageal gastritis sores Pressure Unable to sit up from lying Unable to sit up from flat without using upper limbs 1) (score Unable to get up without using 1) upper limbs (score • • • • • Amber (alert to high concern) Confusion and delirium Acute pancreatitis Gastric or oesophageal rupture Unable to sit up at all from lying Unable to sit up at all from 0) flat (score Unable to get up at all from Unable to get up at all from 0) squatting (score • • • • • Red (high risk) continued Patients with inappropriately high heart rate for degree of underweight are at even higher risk (hypovolaemia). Heart rate may also be increased purposefully through the consumption of excess caffeine in coffee in coffee the consumption of excess caffeine purposefully through at even higher risk (hypovolaemia). Heart rate may also be increased of underweight are high heart rate for degree Patients with inappropriately or other drinks. document (Royal College of Psychiatrists, 2012b). the Junior MARSIPAN from slightly revised These are normal heart rate in an underweight young person. Or inappropriate BMI, body mass index; BP, blood pressure; ECG, electrogardiogram; SUSS, sit-up, stand–squat. ECG, electrogardiogram; blood pressure; BMI, body mass index; BP, a. b. c. Other SUSS test: sit-up SUSS test: stand–squat Table 1 Table

Risk assessment: how ill is the patient? 7 Table 2 Key physical assessment parameters and management actions

Check for/ What to look for Specific management measure

Heart rate Bradycardia, postural tachycardia Nutrition, ECG

ECG (especially Other cause for bradycardia (e.g. heart Nutrition, correct electrolyte abnormalities; if bradycardic block), arrhythmia; check QTc time and increased QTc interval – bed rest, discuss with or any other electrolytes cardiologist; no medication unless symptomatic cardiovascular or tachycardic system complication)

Blood pressure Hypotension – refer to centile charts Nutrition, bed rest; ECG likely to be abnormal while malnourished

Hypothermia Temperature < 36 °C Nutrition, blankets

Assess for Check electrolytes and renal function Oral or nasogastric rehydration salts preferred dehydration treatment unless hypovolaemic; beware of giving fluid boluses unless hypovolaemic

Hypovolaemia Tachycardia or inappropriate normal Senior paediatric review, normal saline 10 mL/kg heart rate in undernourished young bolus then review; if intravenous fluids needed, person, hypotension and prolonged use normal saline with added potassium capillary refill time chloride and electrolytes (e.g. phosphate) as required; consider intercurrent sepsis

Other features Lanugo hair, dry skin, skin breakdown Nutrition; if skin breakdown or pressure sores, of severe and/or pressure sores seek specialist wound care advice malnutrition

Evidence of Low potassium, metabolic alkalosis or Specialist nursing supervision to prevent purging acidosis; enamel erosion, swollen parotid vomiting glands, calluses on fingers

Hypokalaemia Normal electrolytes does not exclude Admit if < 3 mmol/L; ECG; intravenous medical compromise replacement initially; consider HDU, PICU or ICU if < 2–2.5 mmol/L

Hyponatraemia/ Less common, consider water loading Admit if < 130 mmol/L; consider HDU, PICU hypernatraemia or ICU if < 120–125 mmol/L; if intravenous correction proceed with care

Other electrolyte Check phosphate, magnesium, calcium – abnormalities

Hypoglycaemiaa – Admit; oral or nasogastric correction where possible; intravenous bolus if severe – 2 mL/kg of 10% glucose followed by glucose-containing infusion (e.g. 5 mL/kg/h of 10% glucose with 0.45% saline); glucagon may not be effective in malnourished patients

Mental health risk Suicidality, evidence of self-harm, family Admit for comprehensive psychosocial or safeguarding/ not coping assessment with CAMHS involvement. Apply family local self-harm and safeguarding procedures

CAMHS, child and adolescent mental health services; ECG, electrocardiogram; HDU, high-dependency unit; ICU, intensive care unit; PICU, psychiatric intensive care unit. a. Hypoglycaemia is a relatively rare finding at presentation and implies poor compensation or co-existing illness (e.g. infection). Once re-feeding is established, brief hypoglycaemia can be found after meals but should normalise rapidly.

8 College Report 168s Location of care

Where will the patient Box 1 Specialist eating disorder provision be best treated? Specialist eating disorder beds for children should The decision of where to admit rests on the clinical be able to provide: state of the child, the services available locally as zz Expertise in nasogastric feeding (insertions part of a network of care for children and adoles- may be performed off site) cents with anorexia nervosa and, where possible, zz Daily biochemistry zz Frequent nursing observations, up to and parental or patient choice. A child whose primary including 1 : 1 when indicated need is acute medical stabilisation should be zz Prevention of anorexic behaviours (e.g. water admitted to a paediatric bed. Children admitted loading, excessive exercising) a long distance from home should be supported zz Electrocardiograms, daily if needed in maintaining contact with family and peers. For zz Management of the resisting child children aged 12 years and under, the unit should (including safe holding, short-term use of paediatric psychopharmacology) be suitable for younger patients (Box 1). zz Use and management of the Mental Health Act 1983 in under-18-year-olds, the Mental Capacity Act 2005 in 16- to 18-year-olds and Transfer between the Children Act 2004 zz Assessment of tissue viability in emaciated services patients and treatment of pressure sores zz Immediate cardiac resuscitation by staff zz There should be joint protocols between trained to administer resuscitation services to ensure safe transfer and optimal zz Access to advice from paediatricians and transition between services of young people paediatric dieticians in a timely and flexibly with severe anorexia nervosa. If this is not responsive manner possible, when a patient is transferred from Paediatric wards should additionally be able one service to another there should be a to provide: properly conducted and recorded meeting zz Expertise in management of emaciated between representatives of the two services, children usually including the patient and family, so that zz Intravenous infusions it is very clear what will happen during and zz Treatment of serious medical complications after the transfer of care, and who is respon- zz Cardiac monitoring sible for what. Continue such meetings until zz Provision of a paediatric ‘crash’ team transfer is satisfactorily achieved. zz Central venous pressure lines zz Total parenteral nutrition zz Safe care pathways and joint working between zz Artificial ventilation different organisations should be supported by commissioners. zz Parent and carer concerns need to form part of the risk assessment.

Location of care 9 Compulsory admission Recommended policies and treatment and protocols

Patients with an eating disorder have a mental dis- zz Criteria for paediatric v. psychiatric admission. order, might be putting their lives at risk and might zz Special nursing: qualifications and supervision require in-patient treatment. Feeding is recognised of 1 : 1 nurses; role of paediatric v. psychiatric as treatment for anorexia nervosa and can be nurses. done against the will of the patient as a life-saving zz Social work and legal aspects: availability of measure. Young people under 16 can be treated advice in situations of non-consent to treat- against their will if at least one parent consents ment by either young people or their parents/ to treatment on their behalf. However, if the child carers. actively fights the parental decision regarding the necessity of the treatment, compulsory treatment zz Mental Health Act: criteria for its use, identi- needs to be considered. This applies to decisions fication of responsible clinician, identification of responsible manager. within the zone of parental control (i.e. decisions parents would normally make on the child’s behalf zz Specialist eating disorder beds (SEDBs): con- that are in the child’s best interest). sultation and referral, including consideration of provision for children 12 years of age and The decision to apply the Mental Health Act 1983 under. should be considered from the outset in a Junior zz Issues around funding (e.g. special nursing MARSIPAN patient refusing treatment. If both the or referral to specialist eating disorders unit). child and the parent refuse treatment, local safeguarding procedures should be followed and the zz Liaison psychiatry services (where they exist) Children Act 2004 (for patients up to age 18) used or tier 4 CAMHS. if necessary. An identified CAMHS consultant with zz Training role, involvement of consultants and a special interest in eating disorders should pro- trainees with patients admitted and consulta- vide a second opinion in cases where there is a tion with eating disorder specialists. disagreement or uncertainty. zz A Junior MARSIPAN group with at least a pae- Consultant paediatricians can no longer be the diatrician, a child and adolescent psychiatrist, responsible clinician for a patient detained under a dietician and a nurse. the Mental Health Act. The responsible clinician must be an approved clinician. Trusts need mana- gerial structures in place to receive and administer the detention paperwork.

10 College Report 168s Management in specific healthcare settings

Management in general zz patient and parents should be advised not to increase intake rapidly, even if motivated practice to do so. A single consultation about weight and eating General management of anorexia nervosa in concern is a strong indicator of a possible eating out-patient settings and differential diagnosis is disorder. Early intervention is associated with better summarised in Box 2. outcomes and a higher recovery rate than in later years. Behavioural indicators of anorexia nervosa Box 2 Management and differential diagnosis of include being a reluctant attender, seeking help anorexia nervosa in out-patient settings for physical symptoms, resisting weighing and examination, covering the body, being secretive Management: or evasive, increased energy (and in some cases zz Rapid exclusion of other conditions agitation), and getting angry or distressed when zz Risk assessment: age/gender-specific body asked about eating problems. Eating disorders mass index centile, blood pressure, heart rate, temperature, baseline bloods and co-exist with other disorders. The SCOFF ques- self-harm tionnaire is a screening tool for general practice zz Refer every young person with probable validated in adults (Morgan et al, 1999). Height, anorexia nervosa to child and adolescent weight and BMI should be measured and plot- mental health services (CAMHS) ted on centile charts, and a %mBMI (current zz Refer any child who has one or more criteria BMI divided by BMI on the 50th centile for age in the high risk/red category (see Table 1) to paediatrics, with simultaneous referral to and gender multiplied by 100) calculated. Initial CAMHS assessment should include general examination, zz If re-feeding in the community, check including pulse rate and blood pressure, with electrolytes, phosphate, magnesium as for baseline blood tests and electrocardiogram for in-patient care. Where regular bloods are underweight patients or patients where weight is not feasible, in-patient admission should be low or continuing weight loss. sought zz Monitor at least weekly until seen by CAMHS At first presentation: or paediatrics

zz consider findings from physical examination, Differential diagnosis:

including degree of underweight if relevant zz Endocrine – diabetes mellitus, zz establish weight monitoring plan hyperthyroidism, glucocorticoid insufficiency zz Gastrointestinal – coeliac disease, zz discuss psychiatric risk as needed inflammatory bowel disease, peptic ulcer zz provide the patient and family with information zz Oncological – lymphoma, leukaemia, about the nature, course and treatment of intracerebral tumour eating disorders zz Chronic infection – tuberculosis, HIV, viral zz Psychiatric – depression, autism spectrum zz refer to the appropriate CAMHS or paediatric disorder, obsessive–compulsive disorder service depending on level of risk

Management in specific healthcare settings 11 management (or can be supported to achieve Management in out- these) patient paediatric zz expertise in the nutritional support of those settings with anorexia nervosa or can be supported to achieve this A paediatrician’s role with a young person with zz part of a multidisciplinary team eating disorders is to: zz access to in-patient beds zz exclude other diagnoses for weight loss zz an association with a CAMHS team with an zz monitor physical health interest or expertise in eating disorders. zz provide health information. This individual should be made aware whenever When a young person is under the care of CAMHS, a patient with anorexia nervosa needs to be or is the role of the paediatrician needs to be clear to admitted, and should consult and coordinate care all involved. A paediatrician cannot replace input from a paediatric perspective, ensuring protocols/ from CAMHS and should not be the main carer of procedures are in place to effect appropriate man- a patient with anorexia nervosa for any significant agement and calling for opinions/expertise when amount of time. Structures should be put in place needed. ‘Consultant of the week’ systems carry for regular communication between CAMHS and the risk of discontinuity of care, so effort should the general paediatrician. be made to ensure consistency of senior paediatric care. Management in All paediatric units into which a severely ill patient with anorexia nervosa is likely to be admitted in-patient paediatric should have an identified psychiatrist available for settings consultation to provide advice, training and support to paediatric units and help develop a shared care Medical reasons for admission in the severely approach. They should have the following qualities: unwell include administration of intravenous fluids zz an interest, training and expertise in this sub- to correct electrolyte abnormality, re-feeding for ject (or can be supported in achieving these) severe malnutrition, management of physical complications of severe malnutrition and/or associated zz in a position to be able to provide shared care behaviours such as electrolyte disturbance sec- for those admitted to a paediatric ward ondary to purging, and management of an acute zz an association with paediatric staff, specif- medical illness unrelated to anorexia nervosa. The ically those with an interest or expertise in aim is to medically stabilise the patient with prompt eating disorders. discharge from the paediatric ward once it is safe to do so. Paediatric settings can also have a role The psychiatrist might come from an eating dis- as agreed locally, including respite for parents, orders, liaison psychiatry or tier 4 service and be assessment and investigation, self-harm, etc. in a position to provide prompt and reliable input (with cover arrangements) as required. Throughout admission, consistent and coordinated care is paramount, with multidisciplinary collabo- To facilitate the paediatric/psychiatric partnership, ration on management of re-feeding, disordered we recommend: eating and associated behaviours. Every hospital zz the production of guidelines for medical man- to which a young person with severe anorexia agement of severely unwell patients with an nervosa is likely to be admitted should identify a eating disorder, aimed primarily at junior med- consultant paediatrician with the following qualities: ical staff zz an interest in this patient group zz a guide for nursing and medical staff on supporting patients and families zz training in the clinical problems of patients with severe anorexia nervosa and their zz regular staff meetings to ensure a consistent approach.

12 College Report 168s For each admission the following points are and level of academic work that a young person recommended. with anorexia nervosa is able to undertake – they might be anxious about missing school work but zz A multidisciplinary team meeting should be not be well enough to concentrate. Ensure that held regularly – weekly or more frequently if the school is aware of the admission and deliv- required – until discharge, involving senior ery of education on the ward, subject to parental paediatric, psychiatric and nursing staff or the young person’s consent (depending on together with dietetic involvement and other age/capacity). Consider the impact of the young individuals as required. Trainees must be ade- person’s behaviour on others and vice versa, espe- quately supported by senior colleagues. cially if admission is prolonged. Consider restricting zz The meeting should include a review of pro- time off the ward. gress with parents, future plans (including discharge plans) and a meeting with the Paediatric dieticians should be contacted when a young person to convey these as appropri- child with anorexia nervosa is admitted and a safe ate, with minutes recorded and circulated to meal plan agreed with the team and the family (with the professionals, family and young person. no more than 3–5 food dislikes, generally ones they had before developing an eating disorder), includ- zz The formulation of a specific nursing care plan ing a list of snacks with similar calorific values. that addresses the specifics of patient care for Estimate dietary intake prior to admission, with a those with an eating disorder. We recommend particular focus on carbohydrate and B-vitamin not nursing in a separate cubicle unless there intake, and identify any self-restriction (e.g. veg- are indications to do so. etarianism, veganism). If meals are not finished, the child/young person should have the option to Care on the paediatric ward make up lost calories with nutritionally complete Children exhibiting anorexic behaviours (e.g. refus- 2 kcal/mL Ensure® TwoCal, 2.4 kcal/mL Fortisip® ing and hiding food, exercising excessively and Compact or Ensure® Compact sip feeds. Use vomiting) can prove particularly challenging for age-appropriate paediatric supplements/feeds acute paediatric admission services. Staff need a (e.g. 1.5 kcal/mL feeds Fortini®, Paediasure® working knowledge of the illness and to be backed Plus, Frebini® Energy) during the early stages of up by close liaison during the admission. The psy- re-feeding to help reduce the risk of re-feeding chiatric liaison team play a key role in both training syndrome. Using a fat-free supplement alone (e.g. and support. We recommend that continuity of Fortijuice®) is not advisable. Where there is no nursing care is maintained where possible. When paediatric dietician, seek immediate advice rather ‘special’ additional nursing is needed, these staff than waiting. Consider nasogastric tube insertion need to be appropriately trained and arrangements after 24 h if meals cannot be completed. A record put in place for handover. CAMHS eating disor- of the meal plan should be held by staff, parents der teams and paediatric services should develop and the young person (unless they prefer not to behaviour-specific care plans to guide those pro- have a copy). viding extra nursing support. The person who will be present and have the On paediatric wards, it is normal for parents and responsibility for observation, length of snack and carers to stay for much or all of the time. By the meal times, and actions to be taken if a meal is not time the young person needs admission to hos- finished needs to be agreed and documented. If pital, parents/carers are often frightened and a young person is being nasogastrically fed, they exhausted, which limits their ability to manage should still be offered food at each meal and naso- challenging behaviours. Nevertheless, support- gastric feeding tailed off as oral intake improves. ing them in beginning to help their child reverse Nasogastric feeds can be intermittent, bolus or their deterioration can set the scene for a family’s continuous. Many eating disorder specialists advo- involvement in the young person’s recovery. cate daytime bolus feeds at mealtimes so as to Most paediatric wards have access to teaching. mimic physiological demand and so that choice It is important to consider carefully the amount can be offered on each occasion (‘Are you going

Management in specific healthcare settings 13 to eat, drink or be fed this time?’). Night-time feeds until it stabilises. Blood tests are typically done are less helpful in anorexia nervosa than in many daily during the first 2–5 days in those who are other paediatric conditions, because patients being nasogastrically fed or have risk factors might stay awake to monitor the feed going in. for re-feeding syndrome. Repeating after 7–10 Continuous nasogastric feeds, when used, need days is also recommended because of the risk to be closely monitored. Insertion of a nasogas- of late re-feeding syndrome. For those being tric tube against the will of the patient requires orally re-fed without risk factors, or being treated training in safe control and restraint techniques, as out-patients, frequency of blood monitoring and an appropriate legal framework. Percutaneous will be individualised. The aim is to reach full endoscopic gastrostomy tube feeding may be con- nutritional requirements in 5–7 days. Meal plans sidered in severe or chronic cases, when the focus should ensure a weight gain of 0.5–1 kg a week, is on improving other areas of functioning. with weight monitored no more than twice a week. Trends are more important than individual weight Weighing in the same way and at the same time measurements. will help to minimise fluctuations in weight from non-nutritional reasons. For example, weigh the Avoidance of re-feeding syndrome can be encour- patient on the same scales, in the morning before aged by increasing dietary phosphate (e.g. milk). breakfast and after emptying the bladder, in under- It is not standard practice to prescribe thiamine, clothes only. Consider restricting access to fluids, multivitamins or phosphate replacement, although including other patient’s drinks, taps/toilets/show- some do. Management of re-feeding is described ers. Measure urine specific gravity at the same time in Box 3. as being weighed if necessary. Restrict access to ward scales. Behavioural management of patients with eating disorders on paediatric Re-feeding syndrome and wards underfeeding syndrome Potential behavioural problems in young people Sudden reversal of prolonged starvation leads to with eating disorders cause great anxiety for a sudden requirement for electrolytes involved those unfamiliar with them, and can increase risk in metabolism, known as re-feeding syndrome. Phosphate levels can fall rapidly, with neurological and cardiovascular consequences. Those most Box 3 Management of re-feeding at risk of re-feeding syndrome are patients with very low BMI, minimal or no nutritional intake for zz Starting intake should be no lower than intake prior to admission. For most patients starting more than a few days, rapid weight loss and those at 20 kcal/kg/day or higher appears safe. with abnormal electrolyte levels prior to re-feeding. Electrolytes and clinical state need careful A safe approach to re-feeding acknowledges monitoring and transfer to a paediatric unit the possibility of the rare, but potentially fatal, may be required if, for example, phosphate re-feeding syndrome while also recognising that an falls to <0.4 mmol/L. over-cautious approach (underfeeding syndrome) zz In the highest risk patients, such as those with echocardiogram abnormalities, cardiac can be equally risky. There is little consensus in failure, electrolyte abnormalities, active re-feeding guidelines, but clinical experience comorbidities, or very low initial weight, use suggests that for the majority of patients an over- a lower starting intake (e.g. 5–10 kcal/kg/day) cautious approach to re-feeding is not necessary. or add phosphate supplements and review However, close monitoring is required and a more twice daily, increasing intake until weight gain careful approach might be needed in very high-risk is achieved. Low-calorie feeding should be discussed with a nutrition support team. patients. Estimates of the rate of intake increase zz Re-feeding syndrome is most likely to also vary; a common recommendation is to occur in the first few days of re-feeding but increase intake daily from baseline by 200 kcal/day, may occur up to 2 weeks after. Continue dependant on biochemistry. If phosphate drops, biochemical monitoring for a fortnight. then intake should remain static, not reduced,

14 College Report 168s if not managed. Such behaviours are predicta- consideration given to specific psychiatric nursing ble and confirm the diagnosis. Patients are not and medication. Trusts should have their own pol- always aware of, or in control of, these behaviours. icies for the management of violent or otherwise Common behaviours include compulsive exercis- disturbed behaviour, including management of ing (e.g. running up and down stairs, jiggling legs, an acute situation. Continued restraint requires walking around); wearing few clothes in order to specific training. shiver; preventing attempts to feed (e.g. disposing of food, turning off nasogastric feeds); running Criteria for discharge from paediatric away; vomiting; becoming distressed or violent in-patient admission when requests are not complied with; falsifying zz The patient must be physically stable with clin- weights by drinking water, wearing weights and ical problems that can be safely managed in gripping the scales with toes. Patients will be an SEDB or in the community (i.e. the patient unable to alter their behaviour without a lot of is no longer severely physically ill, as defined support. Useful strategies include increasing staff above). numbers (special observations), agreeing a con- tract with the patient, confining patients to areas zz A decision about discharge should only be that can be more easily observed, locking toilets made after multidisciplinary discussion at and bedrooms and observing patients during senior level, and should be based on the therapeutic activities. Occasionally, one-to-one clinical needs of the patient following a full nursing is required. Decisions about how to involve multidisciplinary assessment of physical, nutri- parents in the management of these behaviours tional and mental health needs. should be made in multidisciplinary meetings with zz Discharge planning should begin soon after the senior staff responsible for the young person’s admission and discharge criteria agreed. care. Management of behavioural problems in a paediatric setting is outlined in Box 4. Box 4 Behavioural management of eating Bed rest can be indicated in exceptional circum- disorders in a paediatric setting stances, although it is extremely distressing for young people with anorexia nervosa unless they zz If weight gain is less than expected or there are robustly supported. Generally, gentle activity are sudden changes in weight, assume (watching TV, reading a book) can reduce distress weight-altering behaviours. These are but must be supervised, as will arrangements for inevitable and punitive responses should be toileting and washing, which need to be explained, avoided. zz Early in the admission, schedule a meeting of documented and maintained with consistency. key staff to decide how to achieve treatment Self-induced vomiting can be decreased by lim- aims. Document the meeting clearly in the iting access to toilets after food for 1 h and close notes. Involve (usually) parents/carers and observation. Be vigilant about the availability of (usually) the patient in discussions about the syringes for aspiration and laxatives. Bingeing is treatment plan. uncommon in younger age groups, because a zz Establish the level of nursing supervision needed, and the level of parental care supply of food is required, but nonetheless should possible or appropriate. When possible, be considered. employ a nurse from the specialist eating Assessment by the psychiatry team is required if disorder service to supervise and train. zz Write a management/care plan to there is concern about a risk of or actual self-harm be transferred between nurses with or suicidal ideation. Comorbid conditions such as proper handover. obsessive–compulsive disorder and anxiety are zz Schedule review meetings of staff, parents common and might require specific management and young person, to ensure goals are met or advice. revised. zz Be prepared to use the Children Act 2004 If young people become severely distressed about and/or Mental Health Act 1983 if necessary. eating, psychiatric advice should be sought and

Management in specific healthcare settings 15 zz Transfer to an SEDB with a nasogastric tube should be possible, provided dietetic review The role of and paediatric nursing support is available to commissioners in reposition nasogastric tubes. supporting Junior zz When an SEDB is required but not immedi- ately available, a continuing multidisciplinary MARSIPAN patients plan for care must be agreed until transfer is We recommend that commissioners require their possible, with regular multidisciplinary meet- local providers to develop strategies that can be ings to assess risk, review progress and plan agreed and appropriately commissioned. They care accordingly. should ensure that each region defines the loca- zz All transitions are moments of increased tion of the beds that will become SEDBs where risk. Full documentation and plans for post- these do not already exist, with a clear view about discharge care are required, with plans in whether such beds will be co-located in units that place to address specific needs. accept emergency admissions of acutely disturbed adolescents with other mental disorders or located in a unit in a region that does not take emergencies. Families Where the only resource is a bed in a unit that does not take emergencies, alternative arrangements for Families do not cause eating disorders. Parental the timely admission of young people with severe anxiety is often valid, and often the only reason that anorexia nervosa (e.g. an identified paediatric ward) a young person has reached care. Furthermore, are needed. parents and carers are often the only source of comfort to a severely ill child or young person, When the location of SEDBs is identified, commis- who might be very frightened despite their denial sioners should put together a Junior MARSIPAN and seemingly self-destructive behaviour. A young group (child and adolescent psychiatrist, pae- person meeting Junior MARSIPAN criteria is likely diatrician, paediatric dietician, paediatric and to be relying on parental support to eat at all. In psychiatric/eating disorders nurses) to act as a addition, separation anxiety is common. However, focus for skill development/dissemination and staff might recognise that a young person is advice when a child is admitted to a paediatric unlikely to change their eating behaviour unless bed, that is located in a hospital able to admit such the responses of those around them also change. patients. The Junior MARSIPAN team should have A non-judgemental attitude is essential when explicit links with tier 4 CAMHS eating disorders working with parents and carers, who are best services, who will work in conjunction with tier 3 considered partners in the process of recovery. CAMHS. We suggest that one or two hospitals be Nursing staff might be able to feed the patient identified within each strategic health authority area better, by virtue of their emotional distance, but (average population in England per area: 5 million), trial transfers of responsibility to parents, carers so that patients can be transferred if required. or the young person should be made as soon as possible. Providing opportunities to practice in different contexts will help clarify the level of support Decision-making and the young person needs to eat and from whom, documentation and therefore length of stay and future treatment. Individual circumstances need to be considered Good communication within the multidisciplinary with respect to parent/carer and sibling visits and team and with individuals and their families ensures involvement at meal times; siblings must not get consistency in decision-making and clarity of roles drawn into a parenting role. and responsibilities. Senior clinicians should be

16 College Report 168s directly involved in decision-making, involving the multidisciplinary team and resolving differences of view that arise. It is advisable that parents and young people are involved in decision-making; even when young people do not have the capacity to make decisions for themselves, hearing how the decision was reached can be helpful. Parents and carers will need the necessary information to make decisions collaboratively. There should be good documentation of all decisions about care, including nursing care plans and meal plans, that can be shared with the young person and family.

Management in specific healthcare settings 17 Management in specialist eating disorders beds

There are fewer specialist eating disorder units A small proportion of patients actively resist (SEDUs) for young people (below 18 years of age) re-feeding, and physical restraint or sedation is than for adults, and many are in the private sector. needed. There are no clinical trials evaluating Approximately 60% of young people with severe emergency sedation in severe anorexia nervosa anorexia nervosa are treated in general adolescent in young people. The majority of adult services units, and the remainder in SEDUs. The same level use oral and parenteral benzodiazepines and oral of medical care should be provided in both set- olanzapine, and there are a small number of trials tings. If a young person is in a generic CAMHS unit and case series of atypical antipsychotic use in and needs additional support for the management of eating disorder behaviours, consideration should Box 5 Services provided by specialist eating be given as to whether that young person might disorders beds be better placed in a SEDU. zz Safe re-feeding, including access to dietetic The recommended criteria for a SEDB in either advice setting are listed in Box 1 (p. 9). The services pro- zz Expertise in nasogastric feeding (insertions vided by SEDBs are summarised in Box 5. Medical, may be performed off site) nursing and dietetic staff for SEDBs have a respon- zz Blood pressure, pulse, temperature and sibility to gain and maintain the appropriate level of serum glucose monitoring up to every 4 h knowledge of nutritional problems in young people zz Daily biochemistry zz Echocardiograms, daily if needed and about their treatment. This is typically higher zz Timely access to medical staff during and out than for general training. For example, SEDB con- of hours sultants should attend a course in clinical nutrition, zz Assessment of tissue viability in emaciated and be knowledgeable about the assessment of patients and treatment of pressure sores nutrition, clinical risk, prevention and treatment zz Immediate cardiac resuscitation, with staff of re-feeding syndrome and management of oral trained to administer resuscitation zz Access to advice from paediatricians and and nasogastric feeding. Medically compromised paediatric dieticians in a timely and flexibly patients might require some modifications to stand- responsive manner, ideally in the form of a ard furniture and equipment: special beds (e.g. Junior MARSIPAN group ripple mattress, facilities for raising the foot and zz Frequent nursing observations, up to and head), drip stands, special flooring (e.g. wooden including 1 : 1 when indicated to protect against spilt feed) and similar alterations. zz Prevention of anorexic behaviours (e.g. water loading, excessive exercising) SEDB staff need an agreed protocol for patient zz Management of resistant child behaviours, transfer to an identified paediatric/medical ward. including safe holding techniques and We recommend that a specific consultant paedi- the acute and medium-term paediatric psychopharmacology of children with eating atrician, preferably with an interest in nutrition, is disorders identified as a link. The paediatrician would have zz Use and management of the Mental Health the role of advisor to the SEDB staff, be available Act 1983, expertise with the Mental Capacity for teaching and discussion, consultation about Act 2005 with respect to 16- to 17-year-olds individual patients and discussion of abnormal and Children Act 2004 for children under 16 results, and to supervise and teach on-call doctors years of age zz Psychological interventions for the young who might be placed in the position of advising person and the family SEDB staff. zz Age-appropriate educational facilities

18 College Report 168s young people. In the absence of clinical trials in needed. In addition, each area needs adequate liai- profoundly malnourished patients, clinicians should son services that can support the care of patients use the lowest doses possible because of the risk with eating disorders in paediatric settings, provid- of physical complications, especially hypotension, ing appropriate expertise in relation to psychiatric respiratory arrest or extended QTc interval (which and legal aspects of care. increases the risk of arrhythmia). Frequent moni- Lack of accessible specialist eating disorders toring of side-effects, which are relatively common services is a substantial problem for sparsely pop- but usually mild, is essential. ulated areas, those separated from the mainland, When additional nursing support is required, the as well as those far from the nearest SEDB. In line costs can be high. Some patients require long- with adult MARSIPAN recommendations, we sup- term one-to-one or even two-to-one nursing. In this port the following principles of service provision. relatively uncommon and potentially life-threatening zz Identify a local child and adolescent psychi- situation, funding should be sought at a primary- atrist with training in, or a willingness to be care level, rather than be left as the responsibility trained in, eating disorders and a local paedi- of a single trust, and be subject to quantitative and atrician with training in, or a willingness to be qualitative scrutiny. trained in, nutrition. They should be joined by a dietitian and a nurse to form a local Junior MARSIPAN group and be supported by the Areas with limited local specialist service. local eating disorder zz This group should develop a local policy on provision Junior MARSIPAN cases, to include identification, resuscitation and preparation for transfer We urge all commissioners to ensure that young to a suitable treatment setting with SEBD. people living in their areas have access to a spe- zz In the case of urgent treatment needing to cialist eating disorders service, with appropriately be provided locally (e.g. in a paediatric ward), trained staff and both in- and out-patient provision eating-disorder expertise should be sought in line with commissioning guidance. Specific con- to provide guidance and staff support, and sideration should be given to the needs of those arrangements made for specialist eating- first presenting at 17 years of age, shortly before disorder support to be provided on site where the transition to adult services, for whom links with possible. Many specialist eating disorders adult services might be appropriate from early services see this type of outreach as part of on. For children who are very young (8–11 years their role. of age), regional or national provision might be

Management in specialist eating disorders beds 19 Audit and review

The Royal College of Psychiatrists and the charity BEAT wish to collate information on all deaths from eating disorders so that the maximum possible can be learned from these tragic events. Clinicians are urged to provide information. We recommend that patients with eating disorders are selected for review through the National Confidential Enquiry into Patient Outcome and Death system. The medical care of patients seen in CAMHS will be included in the Royal College of Psychiatrists’ nationwide Quality Network for Eating Disorders. Services should monitor the quality of provision for treatment of severely ill patients with anorexia nervosa; a policy generated jointly should be made available and serious incidents and ‘near misses’ investigated jointly and a report issued, with follow-up of recommendations within a reasonable time frame.

20 College Report 168s Resources and further guidance

A number of services have developed comprehensive protocols for the treatment of young people with eating disorders for the guidance of junior doctors and nursing staff.

zz Examples of protocols and clinical guidelines for the care of children and adolescents with eating disorders can be found on the Junior MARSIPAN website (https://sites.google.com/ site/marsipannini), along with some of the literature referred to in this document. zz The Academy for Eating Disorders has produced a guide to early identification and management of eating disorders: Eating Disorder: Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders (www. aedweb.org/index.php/education/eating-disorder-information/ eating-disorder-information-13). zz Commissioning guidance for young people’s eating disorder services, including care pathways and staffing recommendations, can be found on the NHS England website (www.england.nhs. uk/wp-content/uploads/2015/07/cyp-eating-disorders-access- waiting-time-standard-comm-guid.pdf).

Resources and further guidance 21 References

Postema PG, de Jong JS, Van der Bilt IA, et al (2008) Accurate electrocar- diographic assessment of the QT interval: teach the tangent. Heart Rhythm, 5: 1015–8. Morgan JF, Reid F, Lacey JH (1999) The SCOFF questionnaire: assessment of a new screening tool for eating disorders. BMJ, 319: 1467–8. Royal College of Psychiatrists (2012a) Junior MARSIPAN: Management of Really Sick Patients under 18 with Anorexia Nervosa (CR168). Royal College of Psychiatrists. Royal College of Psychiatrists (2012b) Eating Disorders in the UK: Service Distribution, Service Development and Training (CR170). Royal College of Psychiatrists.

22 College Report 168s