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NHS TAYSIDE EATING DISORDERS SERVICE ADULT EATING DISORDERS GENERAL RESOURCE PACK Contact Us For consultation/advice about this document, or indeed any aspect of eating disorder management, please do not hesitate to contact the team (Monday to Friday, 9am to 5pm): NHS Tayside Eating Disorders Service 4 Dudhope Terrace Dundee DD3 6HG Tel: 01382 306160 Fax: 01382 306166 E-mail: [email protected] Acknowledgements NHS Tayside Eating Disorders Service would like to thank NHS Lothian’s Anorexia Nervosa Intensive Treatment Team, NHS Dumfries and Galloway’s Eating Disorders Service, and the Eating Disorders Network, South East Scotland, for kindly permitting the use of some of their material for this document. NHS TAYSIDE EATING DISORDERS SERVICE ADULT EATING DISORDERS GENERAL RESOURCE PACK Sections 1. NHS Tayside Eating Disorders Service - Overview 2. Introduction: What are Eating Disorders? Diagnostic Criteria 3. Referral Pathways 4. Information/Advice for Health Professionals 5. Assessment and Risk Assessment 6. Nutrition Information/Advice 7. Self-Help 8. Appendix 1: Rating Scales and Recording Charts 2 1. NHS TAYSIDE EATING DISORDERS SERVICE - OVERVIEW Who Are We? NHS Tayside Eating Disorders Service is based in Dundee, and provides outpatient clinics in Dundee, Angus, and Perth and Kinross. The service offers specialist assessment and treatment to adults suffering from severe and/or enduring eating disorders, having access to psychological, nursing, psychiatric and dietetic interventions. The service also seeks to support the work of colleagues managing eating disorders at the Primary Care and Community Mental Health Team levels within NHS Tayside, through training events, consultation and advice. NHS Tayside Eating Disorders Service forms part of the North of Scotland Managed Clinical Network for Eating Disorders and has access to inpatient beds at the Eden Unit, Royal Cornhill Hospital, Aberdeen. Current Clinical Staff: 0.6 wte Consultant Clinical Psychologist/Lead Clinician – Dr Paula Collin 0.5 wte Consultant Psychiatrist – Dr Lesley Dolan 1.3 wte Clinical Psychologists – Dr Louise Richards (Perth and Kinross), Dr Diane Forrest (Dundee) and Ms Louise Hobbs (Angus) 1.0 wte Specialist Nurse – Mr Brian Grieve 0.8 wte Specialist Dietitian – Ms Kareen Taylor 0.1 wte Lead Mental Health Dietitian – Ms Elizabeth Stewart Administrator – Ms Diane Atkinson Service Manager – Ms Elizabeth Drumm Where Are We? NHS Tayside Eating Disorders Service is located within premises at 4 Dudhope Terrace, Dundee. The accommodation provides facilities for administration, basic physical health assessment and monitoring, and nutritional and psychological work, and is shared with other Dundee Community Health Partnership-managed services. 3 What We Provide: 1. Standard Outpatient Therapy Most people with eating disorders can be offered outpatient therapy. Treatment will generally involve a number of different components of care, including psychological therapy, nutritional work, and physical health and weight monitoring. In some circumstances, additional components, such as motivational work, or interpersonal or family therapy, may become a focus of care. Psychological Therapy This is the central role of the main therapist, and involves helping the patient to develop an understanding of the psychological aspects of eating disorders, and to learn the skills to tackle them effectively. Therapy may be delivered on an individual or group basis, and may draw on a number of different models, such as cognitive behavioural and interpersonal psychotherapy approaches. Nutritional Work The input of a dietitian is highly desirable in the treatment of eating disorders. Nutritional work includes nutrition education, analysis of dietary intake and behaviour, and agreeing plans for dietary change. Physical Health Monitoring The expectation is that the monitoring of the physical health of a patient referred to NHS Tayside Eating Disorders Service will be carried out in primary care. The Eating Disorders Service is a mental health service, and is not resourced to assess and investigate physical problems. Advice will be given about the nature and frequency of any monitoring that may be indicated, and about the further action that may be required depending on results. The Role of the Psychiatrist All patients with anorexia nervosa will be assessed by a psychiatrist. Patients with bulimia nervosa will be assessed when indicated by the presence of co-morbid conditions such as depression and/or self-harm, or when there is medical risk due to extreme purging behaviour or other complexity. There will be assessment of mental state to exclude other psychiatric disorders where diagnosis is unclear, assessment and 4 monitoring of risk from both the eating disorder and co-morbid mood disorders, and overview of the results of physical investigations. The psychiatrist will liaise with the GP and/or other involved health professionals when indicated. When required, there will be assessment of capacity to make informed decisions about treatment, and of appropriate use of the Mental Health Act. The psychiatrist will arrange admission to the Eden Unit, or other provider, when specialist inpatient eating disorder treatment is required. Weight Monitoring Any of the professionals involved in the patient’s care may take responsibility for weight monitoring. The frequency of weight monitoring should be agreed with the patient, and they should be discouraged from weighing themselves. The patient should routinely be weighed on the same set of scales, with light indoor clothing and no shoes. Motivational Work Motivational work will routinely be undertaken as part of core therapy. For some patients, motivation is more of a problem, and this needs to be addressed in more detail or returned to at a later point in therapy. Interpersonal/Family Work Work on relationships will be addressed within core therapy. Meetings with family members or carers may be part of therapy, and so, indeed, may be family therapy. 5 2. Low Intensity Monitoring This is designed for people who have suffered from eating disorders for many years, and have already made several attempts at treatment without lasting success. Agreeing to Low Intensity Monitoring is an alternative to deciding to take a complete break from treatment. Rationale for Low Intensity Monitoring Research has shown that people with chronic eating disorders are unlikely to make spontaneous contact with services unless an arrangement is in place for them to do so, but they can sometimes receive life saving treatment if they do. Suitability for Low Intensity Monitoring Patient has had previous individual and/or group therapy >2 years/50 hours Patient is not ‘in extremis’ Patient’s weight is not dropping rapidly Patient is not suicidal If these criteria are met and the patient and therapist agree that Low Intensity Monitoring is appropriate, then arrangements must be discussed with the patient’s GP. Recommendations for Low Intensity Monitoring Low Intensity Monitoring involves the key tasks of monitoring the patient’s physical and mental states. Recommendations for minimum monitoring include: Six-monthly monitoring of weight Six-monthly assessment of mental state, including suicide risk and motivation for further therapy Yearly check of routine blood screens Two-yearly DEXA bone scan 6 3. Active Non-Intervention This is designed for people with chronic eating disorders who do not want further efforts at active treatment. Rationale for Active Non-Intervention Active Non-Intervention is focused on the prevention of suffering and the support of the patient’s comfort and dignity, and not on the prolongation of life through the restoration of nutritional status and physical health. Extremely ill patients can go on to make a full recovery from eating disorders, and it is therefore important to maintain a link with specialist services in order that the choice to return to active treatment is available. Suitability for Active Non-Intervention Patient has suffered from eating disorder >6 years Patient has had previous individual and/or group therapy >3 years/75 hours Patient is not ‘in extremis’ Patient is not suicidal Recommendations for Active Non-Intervention A case conference should be arranged to discuss entry to this module. The patient, their next of kin, their GP, all professionals involved in their care during the proceeding year, and a representative of the Mental Welfare Commission, should be invited to this A key professional should be identified at the case conference, who will be responsible for meeting with the patient yearly to discuss whether they would like active treatment The patient should be able to request resumption of active treatment at any time through the key professional, who will then facilitate entry to the most appropriate module for ongoing care 7 2. INTRODUCTION What are Eating Disorders? Eating disorders are a group of conditions related to body image disturbance and abnormal eating behaviour. These include anorexia nervosa, bulimia nervosa, and atypical eating disorders. The ICD-10 definitions of eating disorders are included on the proceeding pages. In eating disorders, there is not just a disturbance of eating behaviour, but also an abnormal thinking pattern characterised by an extreme preoccupation with body shape and weight, and body disparagement. An important distinction is between those eating disorders that occur in people of at least normal body weight, and those that occur in people with low body weight. Other conditions, including anxiety, depression, obsessional and personality disorders often co-exist alongside eating disorders. People frequently move between the different categories of eating disorder. For some people, compulsive activity is even more important than food restriction. Treatment, therefore, has to consider the meaning of exercise, as well as of eating and of body image in people’s lives. At low weight, it can be psychologically as well as physically damaging to over-exercise. Eating disorders are serious and may be enduring mental disorders. They have the highest mortality rate of any psychiatric disorder. Early identification and appropriate intervention improves the clinical outcome for many people who have an eating disorder. The annual incidence of anorexia nervosa is 8.1 per 100,000 population and of bulimia nervosa is 11.4 per 100,000 population. Approximately 90% of all cases present in females. 30-50% of people may go on to experience long-term, chronic problems. Most GPs see few people with an eating disorder in any one year. 8 Diagnostic Criteria ICD-10 Descriptions Anorexia Nervosa (F50.0) Body weight maintained at least 15% below that expected, or BMI is 17.5 or less Weight loss is self-induced by avoidance of ‘fattening foods’ and one or more of the following: self-induced vomiting; self-induced purging; excessive exercise; use of appetite suppressants and/or diuretics Body image distortion in the form of a specific psychopathology whereby a dread of fatness persists as an intrusive, overvalued idea and the patient imposes a low weight threshold on themselves A widespread endocrine disorder involving the hypothalamic-pituitarygonadal axis is manifest in women as amenorrhoea and in men as loss of sexual interest and potency If the onset is pre-pubertal the sequence of pubertal events is delayed or even arrested Atypical Anorexia Nervosa (F50.1) Disorders in which one or more of the key features of anorexia is absent but which otherwise present a fairly typical clinical picture. For instance amenorrhoea or marked dread of being fat may be absent in the presence of marked weight loss and marked weight reducing behaviour This diagnosis should not be made in the presence of known physical disorders associated with weight loss Bulimia Nervosa (F50.2) Persistent preoccupation with eating, and an irresistible craving for food; the patient succumbs to episodes of overeating in which large amounts of food are consumed in short periods of time The patient attempts to counteract the ‘fattening’ effects of food by one or more of the following: self-induced vomiting; purgative abuse; alternating periods of starvation; use of drugs such as appetite suppressants, thyroid drugs or diuretics 9 The psychopathology consists of a morbid dread of fatness and the patient sets themselves a sharply defined weight threshold, well below the pre-morbid weight that constitutes the optimum or healthy weight in the opinion of the physician Atypical Bulimia Nervosa (F50.3) Disorders in which one or more of the key symptoms of bulimia is absent but which otherwise present a fairly typical clinical picture. Most commonly this applies to people with normal or even excessive weight but with typical periods of overeating followed by vomiting or purging 10 Diagnostic Flowchart for Eating Disorders Weight Weight loss due to other causes Normal weight minus 15% Normal weight range No eating problem Markedly abnormal attitude to shape and weight Bingeeating/ no purging Binge-eating/ purging Anorexia nervosa (restricting) Anorexia nervosa (bingeeating/purging) Bulimia nervosa Subclinical eating disorder Binge eating disorder 11 3. REFERRAL PATHWAYS The Tier System of Service Provision Throughout Scotland, healthcare for people with eating disorders is organised into five tiers, numbered 0 to 4. The rationale is that each person will receive care appropriate to his or her needs, with the best-matched option being offered wherever possible, resulting in a more efficient and effective healthcare system for all. Tier 0 Services: Education and Public Awareness Raising the level of knowledge of eating disorders in the general public; awareness of public conceptions and fears; creating a climate that understands the determinants and risk factors, and strategies that can address these. Tier 1 Services: Communities and Local Neighbourhoods Preventing the onset of eating disorders, or implementing early-intervention strategies aimed at reducing the likelihood of an eating disorder becoming entrenched. Tier 2 Services: Primary Healthcare – Primary Care Mental Health Meeting the needs of people with eating disorders and their carers and significant others. Addressing the emotional problems and poor mental health exacerbated and perpetuated by the eating disorder, for sufferers and their families/carers. Tier 3 Services: Mental Health Services Meeting the needs of people with eating disorders at risk of deterioration, in community settings, by supporting and developing specialist skills to be delivered by Community Mental Health Teams. Tier 4 Services: Specialist Services – Outpatient and Inpatient Meeting the needs of people with severe eating disorders, and their carers and significant others, regarding ongoing intensive support, care and treatment. 12 NHS Tayside Eating Disorders Provision – Tiers 0 and 1 Information leaflets about eating disorders have been developed by the North of Scotland Managed Clinical Network for Eating Disorders and are available via the website www.eatingdisorder.nhsgrampian.org. The website itself provides a useful tool for raising the level of eating disorder knowledge in the general public. Organisations such as b-eat also provide excellent eating disorders leaflets and webbased information. In most instances, people with eating disorders will contact their GP for support first. The GP may monitor the patient medically and may refer the patient to other services. NHS Tayside Eating Disorders Provision – Tiers 2 and 3 The Tayside Psychological Therapies Review (2003) recommended that, in the first instance, people with bulimia nervosa (without significant physical/psychiatric comorbidity) be referred to the Adult Psychological Therapies Service (APTS – Tier 2). The Tayside Adult Mental Health Services Review (2003) recommended that, in the first instance, people with anorexia nervosa be referred to the Community Mental Health Services (CMHS – Tier 3). NHS Tayside Eating Disorders Provision - Tier 4 NHS Tayside Eating Disorders Service aims to ensure the safe and appropriate outpatient management of people with severe and/or enduring eating disorders. The service will also co-ordinate the admission and discharge arrangements of those requiring inpatient care for their eating disorder. Referring Agents: As a general rule, referrals to NHS Tayside Eating Disorders Service come from GPs and other medical staff, APTS and CMHS staff (with the GP’s knowledge). A number of cases are transitioned from Child and Adolescent Mental Health Services. Eligibility Criteria: NHS Tayside Eating Disorders Service is aimed at people in age range 18 (16 for those not at school) to 64 years who have a diagnosable eating disorder. Primarily, this will include the diagnosis of anorexia nervosa, bulimia nervosa, 13 and atypical presentations (e.g., binge eating disorder), where these are identified as the most significant presenting problem Where the eating disorder is co-morbid with a mental or physical health problem for which the person is receiving ongoing treatment from another relevant service, effective joint working will be actively pursued Ineligibility Criteria: NHS Tayside Eating Disorders Service is not aimed at people whose disordered eating is acutely life threatening and who, consequently, require admission to an inpatient unit (e.g., anorexic patients with BMI </= 13 and evidence of system failure; bulimic patients with daily purging and significant electrolyte imbalance). The service will, however, co-ordinate the admission and discharge arrangements for such people The service is not aimed at people who are actively psychotic, with ongoing positive symptoms, or, indeed, people whose disordered eating is driven by a psychosis Where alcohol/substance misuse is a primary presenting problem, referral should, in the first instance, be made to NHS Tayside alcohol/substance misuse services, although joint working with other agencies will be actively encouraged Where a learning disability is a presenting problem, referral should be made to NHS Tayside Learning Disabilities Service 14 Referral Pathway NHS Tayside Eating Disorders Service Suspect an eating disorder if the individual answers “yes” to two or more of the following questions (SCOFF, 1999): Do you make yourself sick because you feel uncomfortably full? Do you worry that you have lost control over how much you eat? Have you recently lost more than one stone in a three month period? Do you believe yourself to be fat when others say you are too thin? Would you say that food dominates your life? ↓ Check against relevant diagnostic criteria (ICD-10) ↓ GP checks: Body mass index Full blood count, U+Es, LFTs, Glc, TFTs Plus Ca, PO4, Mg, Zn if anorexia or bulimia Pulse, BP, ECG Rule out other causes of weight loss ↕ Refer to APTS if: Severity of bulimia is considered mild to moderate, e.g. first presentation, duration < six months Refer to Medical Ward (inform EDS): Physical +/or psychiatric symptoms are life-threatening and specialist inpatient admission may need to be considered First line intervention: Signpost to self-help material Recommend use of food diaries Provide relevant info re. national eating disorder associations Consider involving family/carers Ongoing physical monitoring: Full blood count, U+Es, LFTs, Glc, TFTs Plus Ca, PO4, Mg, Zn if anorexia or bulimia Pulse, BP, ECG ↕ ↔ Refer to CMHT if: The disordered pattern of eating is secondary to another severe +/or enduring mental health concern, e.g. chronic depression, psychosis ↕ ↔ Refer to EDS if: The disordered pattern of eating is identified as the primary presenting problem There is recent and extreme weight loss, with a range of adverse physical symptoms NHS QIS (2006) – Guidance for Referrals to Specialist Eating Disorders Services Referral to specialist eating disorders services is STRONGLY indicated when the following clinical features are present: Anorexia Nervosa: Continuing weight loss Severe emaciation, e.g., BMI <16 Marked vomiting or laxative abuse Physical complications, e.g., hypotension Co-morbid conditions such as pregnancy or diabetes When primary care interventions have failed When depression is marked and/or there is a risk of self-harm Bulimia Nervosa: Symptoms are severe and persistent Duration is longer than six months When there are other dyscontrol behaviours, e.g., shoplifting, overdoses, wrist cutting When depression is marked When simple advice/diaries have failed When there is rapid weight loss, even if not yet satisfying criteria for anorexia nervosa Referral to specialist eating disorders services is VERY STRONGLY indicated when the following clinical features are present: Anorexia Nervosa: BMI <13 Rate of weight loss continuing at >1kg per week Vomiting more frequently than once per day Heavy laxative use Major abnormality of biochemistry or haematology Pulse rate less than 40 per minute, or systolic blood pressure less than 80mm/Hg Prolongation of QTc interval or other significant ECG abnormality Muscle weakness – unable to rise from a squat without use of arms for leverage Core temperature <34C Signs of significant cognitive impairment Bulimia Nervosa: Persistent suicidal thinking Persistent deliberate self-harm Rapid weight loss, although not yet satisfied criteria for anorexia nervosa Major abnormality of biochemistry or haematology 17 4. INFORMATION/ADVICE FOR HEALTH PROFESSIONALS The management of adults with eating disorders focuses on seven components of care. Each person with an eating disorder will have different needs within these components, however, all should be considered as part of the care plan. The components of care are: 1. Physical health monitoring 2. Weight monitoring 3. Mental health monitoring 4. Risk assessment 5. Psychological therapy 6. Nutritional assessment and treatment 7. Carer involvement 18 Low-Moderate Risk Pathway 1. Physical health monitoring – A physical examination, including routine blood tests and an ECG, should be arranged with the patient’s GP every six months. If the person has not had a DEXA bone scan within the past two years, a baseline scan should also be organised. 2. Weight monitoring – This should be undertaken two to four weekly, with the same set of scales and the patient in one layer of clothing. Height should be measured and recorded at the first visit. 3. Mental health monitoring – An initial diagnosis should be made and there should be screening for any other co-morbid conditions. The CORE, EDE-Q and CGS/I should be completed within the first month of treatment and at six-month intervals thereafter. 4. Risk assessment – This should be undertaken informally at each session, but should be documented formally every three months. 5. Psychological therapy – The person should be engaged in psychological therapy, as per the recommendations from NICE (2004) and QIS (2006), every two or so weeks. Clinical Psychologists attached to NHS Tayside Eating Disorders Service can provide consultancy and supervision for this work. If the person has anorexia nervosa, referral should be made to the Eating Disorders Service. 6. Nutritional assessment and treatment – Referral for Dietetic assessment and treatment should be considered. 7. Carer involvement – Involvement of the carer in the assessment and treatment processes should be encouraged. The carer may benefit from a needs assessment. 19 Moderate Risk Pathway 1. Physical health monitoring – A physical examination, including routine blood tests and an ECG, should be arranged with the patient’s GP every six weeks. If the person has not had a DEXA bone scan within the past two years, a baseline scan should also be organised. 2. Weight monitoring – This should be undertaken weekly to fortnightly, with the same set of scales and the patient in one layer of clothing. Height should be measured and recorded at the first visit. 3. Mental health monitoring – An initial diagnosis should be made and there should be screening for any other co-morbid conditions. The CORE, EDE-Q and CGS/I should be completed within the first month of treatment and at six-month intervals thereafter. 4. Risk assessment – This should be undertaken informally at each session, but should be documented formally every four weeks. 5. Psychological therapy – The person should be engaged in psychological therapy, as per the recommendations from NICE (2004) and QIS (2006), every week to fortnight. Clinical Psychologists attached to NHS Tayside Eating Disorders Service can provide consultancy and supervision for this work. If the person has anorexia nervosa, referral should be made to the Eating Disorders Service. 6. Nutritional assessment and treatment – Referral for Dietetic assessment and treatment should be considered. 7. Carer involvement – Involvement of the carer in the assessment and treatment processes should be encouraged. The carer may benefit from a needs assessment. 20 High Risk Pathway 1. Physical health monitoring – A physical examination, including routine blood tests and an ECG, should be arranged with the patient’s GP every two weeks. If the person has not had a DEXA bone scan within the past two years, a baseline scan should also be organised. 2. Weight monitoring – This should be undertaken weekly, with the same set of scales and the patient in one layer of clothing. Height should be measured and recorded at the first visit. 3. Mental health monitoring – An initial diagnosis should be made and there should be screening for any other co-morbid conditions. Referral should be made to NHS Tayside Eating Disorders Service. The CORE, EDE-Q and CGS/I should be completed within the first month of treatment and at six-month intervals thereafter. 4. Risk assessment – This should be documented formally every week. 5. Psychological therapy – The person should be engaged in psychological therapy, as per the recommendations from NICE (2004) and QIS (2006), every week to fortnight. 6. Nutritional assessment and treatment – Referral for Dietetic assessment and treatment should be considered (if the patient is referred to NHS Tayside Eating Disorders Service, this will be undertaken by the attached dietitian). 7. Carer involvement – Involvement of the carer in the assessment and treatment processes should be encouraged. The carer may benefit from a needs assessment. 21 Very High Risk Pathway At this level of risk, inpatient care will be necessary If the person refuses inpatient care, it will be necessary to consider whether detention, under the Mental Health Care and Treatment (Scotland) Act (2003), may be required If the person is not found to meet the criteria for detention, the High Risk Pathway should be followed 22 5. ASSESSMENT AND RISK ASSESSMENT Contents 1. Eating Disorders Assessment Sheet 2. Eating Disorders Risk Assessment Sheet 23 EATING DISORDERS ASSESSMENT SHEET Name: ………………………………… Date of Birth: ………………………… Completed By: ………………………. Date: …………………………………. CHI Number: …………………………. Designation: ………………………….. Weight Is the weight trend over the last two months? Rapidly falling (>1kg/week) ☐ Slowly falling (<1kg/week) ☐ Fluctuating (varying >3kg/week) ☐ Steady ☐ Rising ☐ Duration of symptoms (months/years): Overall: ………… This episode: ……… Highest ever (non-pregnant) weight (kg): ………………… Date: …………………… Lowest ever weight (kg): ………………………………….. Date: …………………… Patient’s ideal weight (kg): ……………………………………… When did weight loss start? What was going on in patient’s life at that time: ………………………………………………………………………………………… ………………………………………………………………………………………… ………………………………………………………………………………………… Weight Control Behaviours For each of the following, please record frequency (per week) and nature of behaviour: Weighing:……………………………………………………………………………… ………………………………………………………………………………………… Restricting:…………………………………………………………………………… ………………………………………………………………………………………… Bingeing:……………………………………………………………………………… ………………………………………………………………………………………… Purging:………………………………………………………………………………… ………………………………………………………………………………………… Exercising:……………………………………………………………………………… ………………………………………………………………………………………… Laxative/Diuretics:…………………………………………………………………… ………………………………………………………………………………………… Slimming Tablets:……………………………………………………………………… ………………………………………………………………………………………….. Other Methods:………………………………………………………………………… ………………………………………………………………………………………….. 24 Physical Factors Height (m): …………………………… Weight (kg): …………………………… BMI: ……………………………………… If patient refuses to be weighed, note this and rate, as you perceive: Emaciated ☐ Very underweight ☐ Slightly underweight ☐ Normal weight ☐ Obese ☐ Is patient pregnant? ☐ Does patient suffer from diabetes? ☐ Clinical/Physical Symptoms GI tract – constipation, diarrhoea, bloating, irritable bowel, other – specify ☐ Oedema – extent ☐ Skin changes – colour, dryness, broken skin, pressure sores, poor healing ☐ Feel cold – susceptibility to cold hands or feet ☐ Hair changes – hair loss, dryness, lanugo hair ☐ Pins and needles – mouth, hands, feet ☐ Menstruation – yes/no, pre-pubertal, amenorrhoea ☐ Dental problems ☐ Swollen parotid glands ☐ Low mood, disturbed sleep, anxiety ☐ Concentration – poor ☐ Relevant biochemistry/haematology ☐ Blood pressure – high or low, reading checked ☐ Bone scan – yes/no, results, date of last scan ☐ ECG – yes/no, results, date of last ECG ☐ Dizziness ☐ Palpitations ☐ Chest pain ☐ Collapse/loss of consciousness ☐ Swollen ankles ☐ Slurred speech/confusion ☐ Sensitivity to cold ☐ Allergies and Food Intolerances – medically diagnosed ……………………………… ………………………………………………………………………………………… Depression ☐ Self-harm ☐ Alcohol misuse ☐ Drug misuse ☐ Bingeing ☐ Purging ☐ 25 ☐ ☐ ☐ ☐ Vomiting Laxatives Diuretics Exercise Current Medication Name Dose Frequency Duration Indication Side effects Current Hormonal Status Women Never had a period (primary amenorrhoea) ☐ Regular cycles ☐ Irregular cycles ☐ Not currently menstruating (secondary amenorrhoea) ☐ Date of LMP …………………………………………………………………………… On oral contraceptive pill ☐ Men Loss of sexual desire ☐ Psychological Factors Motivation to change? No I have never thought of making a change May consider change Plan to make changes in the next few weeks Yes, I am currently making change ☐ ☐ ☐ ☐ Is patient afraid of becoming fat or gaining weight? Not at all Rarely Sometimes Frequently Constantly ☐ ☐ ☐ ☐ ☐ 26 In what way does patient perceive their body? Please circle the appropriate number: Much too thin 1 2 3 4 5 6 Much too fat 27 EATING DISORDERS RISK ASSESSMENT SHEET Name: ……………………………………. Date: …………………………………… Date of Birth: ……………………………. CHI Number: …………………………... Completed By: ……………………………. Designation: …………………………… This is to be used in conjunction with the generic risk assessment. It is a three-step process: 1. BMI Rate BMI as follows: <17.5 = low risk 17.5-15.5 = low/moderate risk <15.0 = moderate risk <13.0 = high risk <12.0 = very high risk LEVEL OF RISK: ……………………………………………… 2. 3. Other Factors If any of the following risk factors are present, increase the risk level by one category for each present: Rate of weight loss >1kg per day Vomiting once per day Heavy laxative use (>20 per day) Weight fluctuations of 3-5kg per day LEVEL OF RISK: ……………………………………………………. Physical Signs (i) (ii) (iii) (iv) (v) (vi) The following risk factors can increase risk but should not be used to decrease level of risk: Prolonged QTc interval (>470 ms for women High Risk and High Risk >440 ms for men) or other ECG abnormality Core temp. <34°C Very High Risk Consider Admission Core temp. <35°C Moderate Risk Muscle weakness – unable to rise from a High Risk squat without using arms for leverage Muscle weakness – unable to rise from a Moderate Risk squat without using arms for balance Circulation – pulse <40 bpm or Very High Risk systolic BP <80 Consider Admission Circulation – pulse <40 bpm or Moderate Risk systolic BP <90 Signs of significant cognitive impairment High Risk Blood tests – abnormalities to be discussed with RMO OVERALL LEVEL OF RISK: …………………………………………………… 28 Management of Self-Harm and Suicide Risk Suicide in Anorexia Nervosa Up to 3% of people with anorexia nervosa successfully commit suicide. Significantly underweight patients are at risk from even relatively small overdoses, so a lower threshold for action is required. Some patients will express their suicidal intent through chronic acts such as dehydration. The following guidelines on assessment of suicide risk are adapted from the WHO document ‘Preventing Suicide: A Resource for Primary Health Care Workers.’ General Risk Factors for Suicide: Single, divorced or widowed Living alone Unemployment Physical illness (especially if associated with pain) Recent major loss or stressful life event Recent discharge from psychiatric hospital Family history of suicide Previous self-harm or attempted suicide Questions to Help Assess Current Risk: Do you feel that no one cares about you? Do you feel that life is not worth living? Do you feel like ending your life? Have you made plans to end your life? Do you have tablets or a weapon to use to end your life? When do you plan to end your life? Where will you end your life? Managing the Level of Risk: Low Risk – The person has thoughts such as ‘I cannot go on’ and ‘I wish I were dead’, but does not have thoughts about ending their life: Offer emotional support Talk through current problems 29 Focus on strengths and previously used coping strategies Consider writing a safety plan, with an agreement to take certain steps rather than act on suicidal thoughts Maintain regular contact Consider referral to mental health services if feelings persist Medium Risk – The person has thoughts about ending their life, but has no active plans to do so. In addition to the above: Work on any ambivalence, to promote the wish to live and all alternatives to suicide Write a safety plan Contact family and friends to enlist their support Contact any other professionals involved to inform them Refer to mental health services on an urgent basis High Risk – The person has definite plans to end their life: Stay with the person Make arrangements for admission to a general psychiatric ward (use the Mental Health Act if necessary) Contact family and friends Contact any other professionals involved to inform them Safety Plans: A number of strategies can be discussed with the patient to help keep them safe if they have thoughts of self-harm or suicide: Agreeing to dispose of means of self-harm Taking time to reflect on previous difficulties and how they were coped with Seeking support from others before acting on suicidal thoughts 30 Recovery and Discharge Definition of Recovery Recovery from eating disorders is achievable for all patients. Studies that have followed the progress of groups of patients with anorexia nervosa, show that recovery is possible even more than ten years after first seeking professional help. Recovery can be defined in different ways. At its most minimal, it can be described in terms of return to the normal weight range (i.e., BMI 19-25) and of normal menstrual functioning. For most, however, recovery also means the return of a ‘normal’ life. Theander’s (1985) Complete Recovery Criteria provide a comprehensive definition: 1. BMI is 19-25 and has been fairly stable at this range for at least six months 2. There is spontaneous menstruation in females/recovery of genital size and function in males 3. Eating habits are normal, without bingeing or purging 4. The patient has a reasonably normal concept of the body, without unrealistic overestimation of body size 5. Exercise is within a healthy range (for most people this ranges from brief daily walks, to up to 3-5 bouts of intensive exercise per week, each lasting up to 60 minutes) 6. There is the ability to have social and sexual relationships 7. There is the capacity to fulfil roles, e.g., to play, study, work, care for others, normally 8. In adults, there is the ability to live independently of family (Complete recovery = 1, plus five of 2-8) The NICE (2004) guidelines for eating disorders say: Following inpatient weight restoration, adults with anorexia nervosa should be offered psychological treatment that focuses both on eating behaviour and attitudes to weight and shape, and on wider psychosocial issues The length of outpatient psychological treatment following inpatient weight restoration should typically be of at least 12 months duration 31 In planning for treatment after discharge, risk of relapse can be assessed using the following table: Risk Score = 1 Score = 2 Duration of Illness >1 year >5 years Problems Absent Present Absent Present Vomiting >2/week >6/week Exercise Absent Present Weight Change at Home Loss >0.3kg/day Loss >0.8kg/day Lowest Ever BMI <15kg/m² <13kg/m² BMI on Admission <15kg/m² <13kg/m² Psychological as a Child Obsessive-Compulsive Disorder Weight Gain in First Six <6kg <4kg Weeks Planned Weight at <19kg/m² <17.5kg/m² Discharge The risk score gives an approximate indication of the intensity of post-discharge care that will be needed to prevent relapse: Risk Intensity of Care <5: Low Risk GP monitoring of medical risk Psychological treatment 5-10: Moderate Risk GP monitoring of medical risk Psychological treatment Practical support (e.g., meal support) 11-20: High Risk Specialist eating disorders service support for the maintenance of recovery and rehabilitation from an eating disorder (These are general guidelines, and an individual formulation will be necessary). 32 Advice at the Point of Discharge It is important that a patient who has recovered from an eating disorder is aware of any ongoing risks for them, and the steps they can take should any problems arise. Relapse: There is a risk of relapse or conversion to a different form of eating disorder, such as from anorexia nervosa to bulimia nervosa. It is, therefore, important at the point of discharge for the patient to discuss with the therapist early warning signs suggesting a return of eating problems. It should be agreed what action the patient could take to deal with the problems and who they could contact for support. A review appointment could perhaps be arranged with the therapist to check progress 6 or 12 months after discharge. Fertility and Pregnancy: As a patient’s reproductive system shuts down in anorexia nervosa, there is often concern about reproductive functioning after recovery. One of the better studies in this area suggests that women who have recovered from anorexia nervosa have no reduction in their ability to become pregnant. The same study, however, finds a greater risk of miscarriage, of premature delivery, or of having a low birth weight baby. It seems that, for some women who have recovered from anorexia nervosa, there is an increased risk of anorexic symptoms reactivating during pregnancy, directly causing these problems. It is, therefore, important that women who have suffered from anorexia nervosa inform their midwife or obstetrician, and that they, in turn, are informed of the normal pattern of weight gain in pregnancy. Referral to a specialist eating disorders service may be appropriate for psychological support. Osteoporosis: Some degree of bone thinning (osteopenia or osteoporosis) occurs in all females who suffer from anorexia nervosa. This is likely to persist for some time, even with restoration of normal weight. Although bone density begins to increase when BMI rises to around 16.5 on average, the rate of increase is variable and generally slow. Recent studies suggest that bone density takes over 20 years to return to normal. It may, therefore, be advisable for some patients who have recovered from anorexia nervosa to avoid high impact sport in the years immediately following recovery, 33 although the risk depends on the degree of bone density loss during illness. Exercise in general should be encouraged if undertaken safely, in moderation and without weight loss, as this may improve bone density. Other Medical Problems: Research suggests that for patients who develop problems with their gut, kidney functioning or stomach, or who develop migraine, during the course of anorexia nervosa, symptoms may persist after recovery. 34 6. NUTRITION INFORMATION/ADVICE Contents 1. Introduction 2. Role of the Dietitian in the Management of Eating Disorders 3. Access to Dietetic Input 4. Working Towards Healthy Eating and Weight Restoration – A Guide for Clinicians 5. Healthy Eating: Getting the Balance Right – A Guide for Patients 6. Food Diary: Monitoring Your Goals 35 Introduction As eating disorders comprise both physiological and psychological components, treatment should combine expertise in both, with health professionals understanding the nutritional effects these disorders can have. Dietitians have an essential role within multidisciplinary eating disorders teams, and should be involved in the assessment, treatment and monitoring of people with anorexia nervosa, bulimia nervosa and binge eating disorder. Role of the Dietitian in the Management of Eating Disorders For further information, see appendix in NHS QIS Eating Disorders in Scotland – Recommendations for Management and Treatment (2006). Access to Dietetic Input Dietetic input will be offered to outpatients whose referrals are accepted by NHS Tayside Eating Disorders Service, as an adjunct to other treatments. If a person is admitted to a ward for urgent medical treatment due to physical complications of their eating disorder, they will be seen by the dietitian responsible for that ward. Treatment will consist mainly of the nutritional requirements for restoring physical stability. The ward dietitian will liaise with the dietitian in the Eating Disorders Service regarding the appropriate level of nutritional support. Outpatients who do not meet referral criteria for NHS Tayside Eating Disorders Service may have access to dietetic input through local nutrition and dietetic services. 36 Working Towards Healthy Eating and Weight Restoration – A Guide for Clinicians An individualised approach to weight restoration is recommended. Rate of weight gain will be determined by a number of factors, including current weight, medical factors and level of motivation. Weight gain should not be too rapid, and a weight gain of more than 0.5kg per week is not recommended. A slow, steady weight gain of 0.2/0.3kg per week should help the patient to adapt and adjust to their changing body shape, although some patients will obviously gain weight at a much slower rate than others. Establish a regular eating plan, based around three meals and three snacks daily Plan regular times for these meals and snacks Work towards small, steady increases to dietary intake, which are not too anxietyprovoking or unrealistic for the patient to achieve Patients may have their own thoughts as to what changes are manageable, and the clinician should establish if these are appropriate (being prepared to offer alternatives if necessary) When establishing a meal plan with the patient, document appropriate levels of fluids. Drinks such as fruit juice and semi-skimmed milk can contribute significantly to the total dietary intake, and patients may find it easier to increase calories in drinks rather than in foods initially Dietary intake can be increased by: Substituting low calorie foods for higher calorie options (e.g., low-fat yoghurt for full-fat yoghurt); Increasing the amount of food eaten in a slow, staged manner; Including drinks which have some nutritional content in the meal plan; It can be beneficial to offer three options for increasing dietary intake and allow the patient to consider which of these would be most favourable. This enables the patient to be involved in, and take responsibility for, the decision-making process. Offer options that are considered healthy, everyday foods, yet, at the same time, will improve nutrition. The aim is to prevent further weight loss and to achieve slow, steady weight gain that can be tolerated. 37 A balanced dietary intake includes all the major food groups, and adequate amounts of carbohydrate and, if possible, fat, should be ensured. Goal setting may facilitate the introduction of ‘difficult’ foods into the meal plan. Nutritional supplements are not recommended to replace everyday foods, but may be useful in specific circumstances. To achieve positive energy balance, the patient’s dietary intake and activity level should be carefully monitored, and advice given as appropriate. Patients should be encouraged to keep food diaries, and to eat meals and snacks with family and/or friends. 38 Healthy Eating: Getting the Balance Right – A Guide for Patients It may be a long time since you ate in a way that is normal and healthy. You may find it difficult to know when your body needs food, and feel uncertain as to what you should eat. By working towards establishing a balanced, healthy eating pattern, you may feel safer and more confident in making decisions about your nutritional intake. The information below might help you to consider working towards a healthy weight range, at a rate you are comfortable with. It might also promote good health and well being, as you develop a way of eating that fits into your pattern of life. Healthy eating means getting the right balance of foods, in the right amounts, to keep your body well. It also means eating in a way that you feel comfortable with and enjoy, that meets your personal food preferences and that allows you to participate happily in social situations. A healthy diet is one that provides sufficient nutrients and energy for your body and brain to function at their best. There are five main food groups: You need some foods from all of the groups to achieve a balanced diet. Whatever your age or weight, it is important to eat the right variety of foods to ensure you are as healthy as possible. The greater the variety of foods eaten, the more likely it is that your diet will contain all the essential nutrients, especially vitamins and minerals, necessary for health. 39 Try to have three meals and three snacks each day (i.e., breakfast, mid-morning snack, lunch, mid-afternoon snack, dinner and supper). Each of these should contain some starchy foods to maintain healthy blood glucose levels throughout the day. Foods rich in starch (e.g., bread, cereals, pasta, potatoes and rice) provide important nutrients such as B vitamins and fibre, and are a low-fat source of energy Aim for the meal on your plate to look something like this: Try to base your meals around small, manageable amounts of foods, rather than dietary supplements, and establish a routine by planning regular times for meals and snacks Remember that fluid is also important. Try to have a drink with each meal and snack, and to include drinks that have some nutritional content, such as fruit juice or semi-skimmed milk Work towards small changes to your dietary intake that are not too difficult or unrealistic. Aim to introduce new foods on a regular basis, and to slowly reintroduce foods that you have previously found difficult to eat. This should be done at a time when you are ready for change and able to plan when best to implement it. It may be helpful to substitute low energy foods for healthier options as you work towards improving your dietary intake. 40 Food Diary: Monitoring your Goals To help you work towards your goals, it may be useful to keep a record of what you eat and drink in the form of a food diary. This can help you to plan for change and to reflect on the changes you have made. In this way, you can use the diary as a way of self-monitoring your progress. As well as recording what you eat and drink, you may want to note associated events and/or feelings, in order that you can identify situations or thought patterns you might also wish to change. It can be helpful too to note the frequency of behaviours you are trying to change (e.g., episodes of bingeing), as a means of identifying important steps you are taking towards achieving your goals. Aim for a socially acceptable eating pattern that fits in with your lifestyle, and within the constraints of your studies, work, finances, etc., and remember that by establishing a healthier eating pattern, your body will adapt to a regular dietary intake resulting in slow, steady weight gain or maintenance. The following is an example of how a food diary might look: 41 MONITORING DIARY Name: Date: Time Hungry Food and Where Binge Yes/No Drink Yes/No Yes/No Yes/No 6.45am No 10am ? Cereal Eaten Kitchen No Vomit No Laxatives Exercise Events/Feelings No at Time Walk Rushing to get bar, black dog (40 to work coffee minutes) Hot Desk No No No Busy at work Soup and Café No No No Lunching with chocolate 1.30pm Yes roll, friend water 3.45pm No Chocolate Desk Yes No Yes (4) Bored, and so snacking crisps 6.15pm No Pasta and Kitchen No No No Gym Tired and light- sauce, class headed water (60 minutes) 8.30pm Yes Cereal, Kitchen Yes Yes No Craving sugar Kitchen No No No Unable to sleep toast and cake 3am ? Toast, black coffee due to guilt MONITORING DIARY Name: Date: Time Hungry Food Yes/No and Where Binge Eaten Vomit Laxatives Exercise Events/Feelings Yes/No Yes/No Yes/No at Time Drink 43 7. SELF-HELP Introduction This section is designed to help the patient: Learn about their illness Understand the types of treatment available Negotiate the practicalities of accessing help What is Self-Help? Self-help involves anything a patient can do to help him or herself, including: Recognising the need for change Being committed to recovery Seeking out what is needed for recovery Being willing to try new approaches Self-help is the basis of the successful treatment of eating disorders. Recovery can only come about when a patient is motivated to get better and works hard at it. Learning about Eating Disorders Websites: The Internet can be an excellent source of information on eating disorders, however, as it is unregulated, some information can be misleading or unhelpful. The following websites are recommended: www.b-eat.co.uk - Beating Eating Disorders (a UK-wide charity) www.rcpsych.ac.uk - Royal College of Psychiatrists www.healthscotland.com - NHS Health Scotland www.sedig.co.uk - Scottish Eating Disorders Interest Group www.eatingdisorder.nhsgrampian.org - North of Scotland Managed Clinical Network for Eating Disorders www.needs.scotland.org - North East Scotland Eating Disorders Support www.anitt.org.uk - Anorexia Nervosa Intensive Treatment Team (Fife/Lothian service) There are a large number of websites that advocate an eating disorder as a lifestyle choice and are strongly disapproving of treatment or any intervention. ‘Pro Ana’ and ‘Pro Mia’ refer to pro anorexic and pro bulimic websites, respectively. Other websites promote extreme fasting for spiritual or cleansing reasons, e.g., breatharianism. Books: Overcoming Anorexia Nervosa: A Self-Help Guide using Cognitive Behavioural Techniques. Freeman, C (2009), Constable Robinson Overcoming Binge Eating. Fairburn, C (1995), Guilford Press Skills-Based Learning for Caring for a Loved One with an Eating Disorder. Treasure, J, Smith, G and Crane, A (2007), Routledge Contacts: NHS Tayside Eating Disorders Service – 01382 306160 North of Scotland MCN for Eating Disorders – 01224 557624 B-eat – 0845 634 1414 Understanding the Types of Treatment Available Patients often start therapy with worries about what this will involve. Typically, it involves sitting in an office with a therapist for an hour, and talking about thoughts, feelings and behaviour. The therapist attempts to help the patient to better understand their problems, and to tackle them in an adaptive way. Cognitive Behavioural Therapy (CBT): CBT aims to help the patient to become aware of thought distortions that are causing psychological distress, and of behavioural patterns that are reinforcing it. Patient and therapist work together to identify and understand problems in terms of the relationships between thoughts, feelings and behaviour. This leads to the identification of personalised, time-limited therapy goals and strategies, which are continually monitored and evaluated. Typically, sessions are weekly or fortnightly, last an hour, and run to a total of between 15 and 20. After treatment is completed, patient and therapist often agree to a limited number of follow-up sessions, in order to maintain the progress achieved. Interpersonal Psychotherapy (IPT): 45 IPT aims to work specifically with the relationship issues that are often underlying of psychological distress. Therapy focuses on one or two agreed areas of relationships, or on resolving interpersonal problems. IPT is time-limited, with a standard period of 16 weekly sessions, although consolidation and maintenance sessions may also be appropriate. Therapy progresses through three stages: assessment, problem focus and conclusion. 46 Basic Information on Eating Disorders Myths about eating disorders (from b-eat): Eating disorders are just phases Early intervention is vital to avoid the long-term health consequences of eating disorders, like osteoporosis, heart and kidney damage, infertility and restricted growth Eating disorders are just faddy diets Eating disorders have the highest mortality rate of all mental illnesses. Without appropriate treatment, one in five sufferers will die prematurely Eating disorders just affect young women Currently, 1.15 million people in the UK have eating disorders. 15% of these people are men Eating disorders are modern phenomena Eating disorders were first recorded in the 17th century. The pressures and pace of modern life have, however, played a part in their increase Eating disorders are caused by the media Research into the causes of eating disorders is helping us to understand the many reasons an eating disorder develops, which include genetic factors, personality traits and life events Eating disorders cannot be beaten With appropriate treatment and support, it is possible to make a full recovery from an eating disorder 47 Literature available from b-eat (www.b-eat.co.uk) to download: Eating Disorders and Men: The Facts Eating Disorders and Osteoporosis Eating Disorders and Puberty: Information for Young People Eating Disorders and their Effect on your Teeth Eating Disorders: A Rough Guide for Young Men Eating Disorders in the Workplace Getting Help – The Path through Treatment Information about Private Counselling Information for Over Eaters/Compulsive Eaters Living without Laxatives Recovery Booklet for Young People Self-Harm Understanding Polycystic Ovary Syndrome For the public – leaflets about eating disorders to download: All about Anorexia Nervosa. The Mental Health Foundation Nervosa. The Mental Health Foundation (www.mentalhealth.org.uk) All about Bulimia (www.mentalhealth.org.uk) Eating Disorders – What, Who, Why and How to Help (www.bps.org.uk) Eating Disorders in Scotland – A Patient’s Guide (www.nhshealthquality.org.uk) Toolkit for Carers – The Caring Role in Eating Disorders (www.eatingresearch.com) For professionals – leaflets to download and use with patients: The South East Scotland Eating Disorders Network has a range of leaflets available on its website (www.ednses.com) to download and use with patients, including: Body Image Complications of Erratic Eating Counting Calories Diuretics/Water Tablets Eating Disorders and Osteoporosis 48 Effects of Semi-Starvation on Behaviour and Physical Health Guidelines for Establishing ‘Normal’ Eating if you Suffer from Anorexia Nervosa Guidelines for Establishing ‘Normal’ Eating if you Suffer from Bulimia Nervosa Health Problems Resulting from Menstrual Disturbance Helpful Steps for Coming off Laxatives Laxatives and Eating Disorders Meal Support Monitoring your Eating Principles of Normal Eating Psychological Treatment for Eating Disorders (Cognitive Behavioural Therapy) Recovery Self Induced Vomiting The Cognitive Method for Eating Disorders What are the Causes of Eating Disorders? What are the Consequences of Abusing Laxatives? What is a DXA Scan? 49 APPENDIX 1: RATING SCALES AND RECORDING CHARTS The following specific measures are recommended to monitor outcomes in adults with eating disorders: Body Mass Index (BMI) – weight (kg), divided by height (m) squared = BMI Eating Disorders Examination Questionnaire (EDE-Q) – Appendix II in Fairburn, CG, Cognitive Behavioural Therapy and Eating Disorders, Guilford Press, New York, 2008 Clinical Impairment Assessment Questionnaire (CIA) – Appendix III in Fairburn, CG, Cognitive Behavioural Therapy and Eating Disorders, Guilford Press, New York, 2008 Scores should be recorded every six months throughout treatment, and can serve to motivate by highlighting progress. 50