Dear Dr Richardson

Clinical Psychology

Working with Eating Disorders

This resource pack has been compiled by Louise Langman and Vicky Burnard for health professionals working within the Plymouth NHS Trust.

It is intended as an introductory guide to assist staff in their role with people who present with eating distress. It is not intended for diagnosing or treating and is not a substitute for professional consultation with peers and managers.

The information contained here has been pooled from a variety of web sources and professionals with their consent. Effort has been made to provide accurate and up- to-date information, which has a sound evidence-base. However, we cannot assume responsibility for the content of websites and resources that have been included here, nor do we make warranty or representation, express or implied, that the information contained or referenced herein is accurate or complete.

Special thanks is given to Professor Janet Treasure and the Eating Disorders Unit at South London and Maudsley NHS Foundation Trust for reproduction of some of their educational material, and to the Haldon Unit in Exeter and the Plymouth Eating Disorders Service for their contribution.

IID June 2010 Review 03/2012 Version No. 1B CONTENTS

What are eating disorders? . Anorexia Nervosa (AN) . Bulimia Nervosa (BN) . Binge Eating Disorder (BED) . Physical, psychological & social symptoms

Giving support . Points to bear in mind . What questions should I ask? . The SCOFF questions . History taking, Screening physical symptoms . Focus on regular eating, establish therapeutic relationship, specific strategies (food diaries, behavioural strategies, cognitive approaches) . Examples of ‘curious’ questions you may find helpful

Body Mass Index . BMI table and unit conversion tables

Routine blood tests & their interpretation

Medical risks associated with Eating Disorders . When should I be worried? . Amenorrhea, Electrolyte imbalances, Re-feeding syndrome . Physical well-being recommendations

Treatment & Recovery . Therapies (see also NICE guidelines section)

Nutrition . Fact sheets, restoring regular eating & meal plans

Relapse prevention . What to include in a relapse prevention plan

Local Services . Plymouth Eating Disorder Service . The Haldon Unit, Exeter . Management guidelines for ED in primary care . Referral forms

A service user perspective

Continued overleaf CONTENTS continued:

Use of the Mental Health Act (MHA) . Assessing capacity . Discussion paper: Hard to Swallow

NICE Guidelines . Quick reference guide

Books & websites for further information An introductory guide to eating disorders

What are eating disorders?

Eating disorders (EDs) are a range of illnesses characterised by psychological and behavioural disturbances associated with food and weight. Traditionally there are three main types:

1. Anorexia nervosa 2. Bulimia nervosa 3. Obesity

In this guide, we focus on anorexia nervosa (AN), bulimia nervosa (BN) and binge eating disorder (BED). However, classification systems differ and it can be more helpful to think in terms of symptom traits (see table below) rather than a rigid diagnosis. Additionally, an individual may fit different diagnostic categories over time as his or her symptoms evolve. Differential diagnosis eating disorders categories

Anorexia Bulimia Binge eating Over concern about weight/shape...... ++ +++ +/- Extreme weight control measures...... +/- ++ - Low weight and endocrine problems...... ++ + - Binge...... +/- ++ ++ What is anorexia nervosa?

Triad of: 1. Weight, measured as Body Mass Index (BMI) <17.5kg/m2 due to controlled eating; 2. Distorted body image and abnormal attitudes to food and weight; 3. Amenorrhoea (loss of periods) and other signs of starvation. What is bulimia nervosa?

Triad of: 1. Binge eating real or perceive excessive amounts of food with loss of self- control; 2. Desire for thinness and preoccupation with food and weight; 3. Strategies aimed a weight reduction – vomiting, laxative and/or diuretic abuse, excessive exercising. What is binge eating disorder?

1. Binge eating real or perceived excessive amounts of food with loss of self- control; 2. No use of extreme weight control strategies, therefore often associated with obesity.

What outcome should I expect?

• All forms of eating disorder have a somewhat protracted course. • AN has a high medical risk. In fact, of all other psychiatric diagnoses, AN has the highest death rate. • Cases of AN can evolve into BN. • Cases of BN can evolve into substance abuse. • Early intervention improves long-term outcome.

How may a patient with an eating disorder present?

Eating disorders can present in a wide variety of ways. The above statement, that early intervention improves outcome, is a true paradox. Indeed, the last person to acknowledge they have a problem and to seek help will often be the sufferer themselves. Their illness swears them to secrecy and silence. Routinely, a sufferer will resist help and intervention and deny all problems, reacting angrily when confronted. Often, it is a concerned friend, relative or tutor who brings the sufferer to attention.

The first signs of an ED are subtle and are often meticulously concealed by a sufferer. Behaviour may begin over many years and are often misconstrued as just ‘normal’ growing up, or perceived as a change in hobbies, interests or concerns. The ‘classic’ emaciated appearance of AN triggers immediate alarm bells and a spot diagnosis, but when body weight is ‘normal’, to detect an ED requires looking deeper, beyond the physical signs.

It is best to think of ED presentation in terms of three categories, physical, psychological & social. Physical indicators

• Loss of weight • Absence of periods • Other physical signs – swollen glands, hoarse voice, puffy face, hamster cheeks, tooth decay (all consequences of vomiting regularly), dry and pale skin, blue hands and feet, visible veins and feathery, downy hair on the face, arms and back. Lethargy, tiredness and loss of sex drive. Psychological indicators

• Low mood • Low self-esteem • Self-criticism – dissatisfaction with physical appearance and general achievements, personality and social capabilities; self deprecating comments such as ‘I’m rubbish’, ‘I’m such a bitch’, ‘I’m lazy’, ‘I’m such a freak’, and ‘I’m so useless at that’ • Anxiety/irritability and unpredictable fluctuations in temperament • or alternatively, emotionless and numb, rarely showing anxiety, sadness, anger, joy or pleasure • Behavioural changes (restless, continually ‘on the go’, unable to sit still and insisting on rising early), and obsessional symptoms (tidying, cleaning, hand washing, meticulous personal hygiene). • Poor concentration / unable to follow conversation (e.g. during worker contact meetings) Social indicators

• Isolation – an ED takes precedence over everything and everyone. Hobbies may be forgotten or replaced with food or exercise related activities. Friends are often ignored and social contacts lost. • Academic problems – studying may be neglected: a sufferer has new priorities. Although, equally, many sufferers are meticulous, diligent and perfectionist when it comes to academic work. They are model students and high achievers. • Friends notice unusual eating or exercise habits – cooking elaborate meals for others but not eating them themselves; – encouraging and watching others eat; talking incessantly about food and its preparation; – an unusual interest in recipe books, cookery programmes and product ingredient lists; – spending hours shopping for food; endless excuses for not attending birthday meals or lunch invitations; – reluctance to eat in public, always have ‘eaten earlier’ or ‘don’t worry, I’ll have something later’; – distractions to hunger: constantly chewing gum or consuming vast quantities of diet fizzy drinks or black coffee; – food fads: a liking of foods with strong flavours, mustard, chilli, tomato ketchup, Tabasco, marmite, vinegar. Copious amounts may be added to a meal to ‘mask’ its taste; – consuming large quantities of ‘empty calorie’ foods such as vegetables. Skipping meals and eating small portions; – walking everywhere, regardless of the distance, weather, or time of day; – relentless and gruelling exercise routine. Energy expenditure outweighing energy input. • Secret eating and food disappearing. Food may be hoarded or unwanted food may be hidden in unusual places. • Compensatory actions – vomiting after meals (visiting the bathroom mid meal or straight after, use of air conditioner to conceal smells), laxative abuse and exercising immediately following eating to counteract calorie intake. Points to bear in mind when meeting for the first time:

Believe any initial suspicions you have and consult colleagues. Avoid denial. Ask other workers to watch for characteristic behaviours. Gather evidence: new isolation, absence of eating. Observe a keenness for physical education, ‘calorie consuming’ sports and enthusiasm for any academic work related to food – home economics, a nutrition degree or aspirations to be a dietician. Raise awareness in meetings.

Show concern, but focus chats away from food issues. Try and create openings for the individual to talk freely. For example: ‘I can’t help noticing that things are quite difficult for you at the moment, would you like to talk about it, or is there anything I can do?’ or ‘Is everything okay at college/university at the moment, you seem anxious, low etc’.

After raising general concerns, gently challenge ED related behaviours. Be warned, any challenge related to food, weight loss, eating habits or exercise may be met with fervent denial and anger.

Remember challenges and concerns may also be met by ‘nothing’s wrong. I’m fine’, ‘no, everything’s okay, thanks’, ‘I’m fine but I just haven’t really felt like eating much recently, but it will pass, don’t worry.’ Do not be falsely reassured.

Continue challenging, voicing your concerns and watching. Let the sufferer know that you know they have a problem. It may be a long time before they admit it to themselves, and even longer before they talk openly.

Don’t give up trying, and keep in touch regularly. Watch patiently, don’t leave and most importantly be there for them. They need you.

If the situation continues to deteriorate, tell the individual of your great concern and gain consent to involve other agencies. When should I be worried about someone's medical risk?

It is important to link up with a medical practitioner so the level of medical risk can be measured. In part this relates to weight loss but methods used to compensate for eating, or weight control measures such as vomiting, laxative abuse and fluid restriction can cause serious and sometimes life threatening electrolyte imbalances leading to cardiac arrest or heart arrhythmias. A patient risk assessment based on BMI alone is therefore wholly inadequate. Additionally, monitoring weight has the potential for deceit with ‘water loading’ (drinking lots of fluids prior to weigh in) and wearing concealed weights in clothing so as to falsify the figures.

See this resource pack for a BMI chart. In order to use this you need an individual’s weight in kg and height in metres. Although you may not want to get involved in the details of health monitoring yourself, it may be a helpful exercise for the individual to take some responsibility for thinking in terms of health risk, and the dangerous, sometimes long-term consequences of their actions. The person’s GP or practice nurse can provide regular weigh-ins. This can be set up by the individual themselves or their care coordinator. What questions should I ask?

As emphasised previously, early recognition of an ED improves long-term prognosis. The SCOFF questionnaire uses five simple screening questions. Its use is recommended by the National Institute for Health and Clinical Excellence (NICE) and it additionally has been validated for the initial detection of EDs in both specialist and primary care settings. It has a sensitivity of 100 per cent and specificity of 90 per cent for AN. Although not diagnostic, a score of 2 or more positive answers should raise your index of suspicion and highlight the need for a more detailed history as delineated below. The SCOFF questions:

Do you ever make yourself sick because you feel uncomfortably full? Do you worry you may 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? The eating history:

Eating and anorexic behaviour

• Do you avoid eating with others? • Which foods feel 'safe' and what do you avoid? • Do you ever vomit, exercise, abuse laxatives and /or diuretics? If so, how much and when? • Do you ever lose control or binge? How often and what do you eat?

Eliciting psychopathology

• What do you think of your current weight? • What do you see as your ideal weight? • How would you feel if you were the normal weight for your height? • How much of the day do you spend thinking of food and your weight? • Do you ever get depressed or guilty? Do you ever feel suicidal? • Has your life become more ritualised? • Do you have compulsions to do things e.g. binge, over exercise?

Screen of Important physical symptoms

• When was your last period? • Have you noticed any weakness in your muscles? What about climbing stairs or brushing your hair? • Are you more sensitive to the cold than others? • What is your sleep like? • Have you fainted or had dizzy spells? • Have you problems with your teeth? (teeth rotting/ bad breath) • Have you had any problems with your digestive system?

Is there anything care coordinators or other health professionals should not say or do? (see also ‘increasing resistance’)

• Do not get into confrontation. State what you have noticed and what your concerns are calmly. • Do not expect the individual to accept the problem at the first attempt. You do not have to win every battle to win the war. • Agree to disagree. Suggest a later meeting to review things. • Do not get into the details about food, or shape, or weight. Consider the bigger picture of broad quality of life. • Join with the patient in working within the constraints of ‘higher powers’, i.e. nutritional safety, duty of care, Mental Health Act, etc. How can I support people with eating disorders?

People with EDs are usually ambivalent about change and gain professional help only to please others. Engaging such individuals in treatment can be difficult. EDs are a complex mixture of physical and psychological morbidity. A variety of self-help books have been developed, usually based on Cognitive Behavioural Therapy (CBT) principles. Additionally, some resources have been written for carers (professional and non professional). In most studies, the best outcome is attained by a form of guided self-help. This involves using general counselling skills, warmth and empathy in order to support the eating disorder patient to follow specialist advice. Books and web-based treatments are available for AN and BN. Some are listed in this resource pack and at www.eatingresearch.com

General pointers

1. Help move the patient into the position where they are interested in considering change – by discussing the pros and cons of their behaviour, for example. 2. A motivational interviewing approach can help with patient's ambivalence about change. There is a downloadable resource about MI on www.eatingresearch.com 3. Guide the patient to an expert resource outlining the long-term effects of starvation, nutrition advice and general information about eating disorders. Books for patients and carers are available on www.eatingresearch.com and listed in this pack. 4. Counselling of other issues – eg relationship problems, perfectionist, rigid and anxious traits. 5. Information sharing with carers can be invaluable and should be encouraged.

Be aware that:

People with EDs are often highly perfectionist and terrified of making mistakes. This can make time management and prioritising difficult. Also, they often have a cognitive style in which they focus too much on detail and find the ability to synthesise information concisely and coherently very difficult. They may get overwhelmed in their overly analytical approach. The brain itself is a hungry organ and requires more than 500 kcal a day itself. Anything less than this, then attention and working memory are preoccupied with food issues and there is less capacity for taking in the guidance and support you may be providing. How do I support someone with bulimia nervosa?

There are self-treatment books and web-based treatments based on CBT.

Step 1, focus on regular eating • Aim to eat three regular meals per day to reduce the urge to binge. • Aim for a diet with low glycaemic index food to keep blood sugar levels constant. • Gradual goals to minimise weight-reducing behaviours (vomiting, laxatives, etc) • Education about the medical consequences of weight reducing behaviours and the fact that the brain becomes addicted to food (and other substances) if there is (a) starvation (b) intermittent consumption of high sugar/fat food (c) stress (d) vomiting. • Advice on a healthy balanced diet.

Step 2, establish a therapeutic relationship • Aim for a collaborative approach to the disturbed behaviour. • Acknowledge that there will be many relapses and difficulties on the path to regular eating. • Counselling of other issues – e.g. sexual abuse, relationship problems, alcohol and/or drug abuse.

Step 3, specific strategies • Self-monitoring by the use of food diaries. • Behavioural strategies – these can be used with the diaries. • Cognitive approaches – to challenge beliefs and change behaviours.

Keeping food diaries

These are the mainstay of help in BN, and can also be helpful in AN. A diary encourages linking of feelings (sadness, inadequacy, rejection, guilt etc) to food related behaviours – e.g. restriction, vomiting, exercising. Often, the need for a sufferer with AN to restrict their intake has been explained by the continual feeling of physical fullness. In fact, sufferers are ‘full of feelings’ and not physically full. Their anorexia is a way of stemming and dampening their emotions, bottling everything up inside. Equally, bulimics can be so ‘full of feelings’ that they feel a need to purge those feelings away. ED sufferers would prefer to feel numb. Their feelings and emotions are too uncomfortable to sit with. A diary may take weeks for a patient to commit truthfully to, as it is often difficult to confront the pain of reality.

Behavioural strategies Using the diary, the patient should be encouraged to see his or her behaviour and how they may change this, e.g. • Visualise and plan in detail a healthy eating plan with the following targets that can be gradually approximated to: sufficient quantity of food for metabolic needs (>2000 kcal); sufficient variety of food nutrient; social eating. • Decide that she will try not to vomit before 9am, and then 10am, etc. • Decide on certain foods that feel 'safe' and eat those at times that feel more difficult. • Plan to do something immediately after eating to take her mind off vomiting. • Decide before she starts eating how much she is going to eat and try to stick to that. • Only keep so much food in the house. • Only go shopping with preplanned lists and limited money and avoid the sight and smell of highly palatable foods when hungry.

Cognitive approaches

• Identify beliefs (using the diary), e.g. 'if I eat a chocolate bar I will put on a stone', and underlying assumptions, e.g. 'all people who are fat are worthless'. • Challenge beliefs by discussion and support from literature. • Change beliefs by consistent approach. DID I INCREASE HIS OR HER RESISTANCE TO CHANGE BY DOING SOME OF THESE?

1. Ask questions to which clients give short answers. 2. Respond to a client’s response to an open-ended question with another question. 3. Ask a series of questions in a row. 4. Argue, lecture or persuade with logic. 5. Assume an authoritarian or expert role. 6. Give expert advice at the beginning. 7. Order or direct, warn or threaten. 8. Do most of the talking. 9. Get into debates or struggles about diagnostic labelling. 10.Make moral statements, criticise, preach or judge. 11.Tell the client that he or she has a problem. 12.Prescribe solutions or a certain course of action. Treatment and recovery

Recovery from an eating disorder will never be easy, never short, and never painless. The gaining of weight or relinquishing of unhealthy eating behaviour is a slow, long, arduous struggle full of emotional turmoil. The strength and mental will power an individual needs to break free from their illness is immense. An individual cannot recover without support and guidance. For some, breaking free from an eating disorder may be their toughest challenge in life. They will feel lost, alone, and vulnerable.

Recovery is complex. Not only does an individual have to rebuild their body physically, they also have to rebuild themselves psychologically. They have to find the necessary skills and tools to cope with life and its resulting emotions without depending on their eating disorder.

A regular and balanced eating pattern needs to be established and underlying emotional problems need to be explored, addressed and resolved. Weight gain in anorexia, or breaking the binge-purge cycle in bulimia, are both long processes. Setbacks are common and at times, progress is invisible, but recovery is achievable.

There is considerable evidence to show that the earlier treatment begins, the more successful it will be, but the first signs of an eating disorder are subtle and are often meticulously concealed by the sufferer (see signs of an eating disorder).

The longer an individual lives in secret with their illness, the higher the chance it will plague them for the rest of their lives and that treatment will be less successful. With time, distorted body image and low self-esteem become deep- rooted behaviours and habits become ingrained, and feelings and emotions fixed. The treatment response of adults with anorexia is much less positive than for adolescents: only about a third are in remission after one year of specialist outpatient psychological treatment and up to 50 per cent of those who remit, relapse, many within the first year after treatment.

Specialised services for eating disorders offer the best support: however, many parts of the UK have little or no designated NHS specialist services for eating disorders (See local services section in this resource guide).

Guidelines on treatment for eating disorders provided by the National Institute for Health and Clinical Excellence tell you what you can expect from the NHS. To find out more, look at the NICE guidelines booklet enclosed in this resource pack. First step: acknowledging that eating is a problem

The first, and perhaps most difficult step in treatment, is for the individual to acknowledge that eating is a problem. They have to want to change their life and give up their illness. Ambivalence will lead to an incomplete recovery or relapse.

People with anorexia nervosa highly value their undernourished state and are typically reluctant to contemplate change. In contrast, family members are usually desperate for change. This discrepancy, together with the often life- threatening nature of the illness, makes treatment of anorexia an extremely challenging task.

Many young women with bulimia do not acknowledge there is a problem because they are ashamed about their abnormal eating habits. When Princess Diana publicly spoke about having bulimia, many more women sought help: a study of the numbers of women visiting their GPs to talk about their eating disorder showed the total increased when reports of Diana’s battle with bulimia hit the headlines in 1992 – and began to fall again after her death in 1997. It is now estimated that only one in 10 adolescents with bulimia seek help.

The role of GPs

A GP is normally the first point of access to NHS services. He or she will be able to confirm the diagnosis of an eating disorder, assess its severity and evaluate the best course of action. From this point, most individuals are referred to a psychiatrist or a psychologist, or to a community mental health team. In Plymouth there is a specialist eating disorders service, Plymouth Eating Disorder Service (EDS) and in Exeter, a specialist inpatient service, The Halden Unit.

Research has shown that people with anorexia consult their GP significantly more often than other people over the five years prior to diagnosis with psychological, gastrointestinal or gynaecological complaints. A single consultation about eating or weight/shape concerns is a strong predictor of the subsequent emergence of anorexia.

There are sometimes considerable delays between first contact with a GP and the point where appropriate help becomes available and it is important that families are persistent in their request for referral.

Outpatient treatment

More often than not, someone with eating disorders will see a therapist who may be a nurse, psychiatrist or psychologist on an outpatient basis. Their weight will be closely monitored. For anorexia, treatment will include helping to devise a comfortable and safe weight-increasing diet. In bulimia, the focus will be on dispelling the conviction that eating three meals a day, without the use of weight controlling measures, will lead to weight gain. There may be sessions with a psychotherapist who will aim to help an individual express their emotions and feelings without using food. The idea is that an individual will be helped to come to terms with any problems they may be avoiding and learn how to cope with stress, anxiety, guilt or negativity in a less destructive way.

Inpatient treatment and day care

If outpatient treatment is proving unsuccessful, or if the psychiatrist, or psychologist, or care coordinator feels a greater level of support is needed, someone with anorexia may be admitted to hospital, either to non specialist or specialist beds. Currently specialist eating disorder inpatient services are not available in the Plymouth area. The closest specialist unit is the Halden Unit in Exeter. This unit is located in Wonford hospital and offers highly structured care, dedicated solely to the treatment of patients with eating disorders. Inpatient care means they remain in hospital full time.

In Exeter, patients may also attend a day care program for a few days a week, but spend nights at home. Currently there is no such provision in the Plymouth area. Days consist of regular and supervised meals and snacks, with trained nursing staff offering encouragement, support and reassurance. The regime has to be strict – an eating disorder makes an individual devious. It includes restricted exercise for those on weight increasing diets, supervision with nursing staff after meals to prevent vomiting and restricted access to kitchen and food supplies to stop bingeing. Food is interspersed with an intense therapy programmes, including group therapy with other patients, individual therapy and family therapy, involving parents, siblings and partners.

For adults who have had anorexia for a long time, the chance of recovery is improved if their weight is restored in hospital to the normal BMI before starting therapy programs: this may involve them spending some time there. However, existing evidence suggests shorter admissions may be better for adolescents. It is important to restore their weight to the normal growth trajectory, but this can often be done from home. Therapies

NICE guidelines currently advocate cognitive behavioural therapy (CBT) and a guided self-care using CBT technique is often the first step in treatment. Self- monitoring techniques, such as food diaries and thought records, are widely used.

One of the aims of any sort of therapy is for the individual to be able to reflect clearly on their thoughts, emotions, and state of mind, and to understand its strengths and weaknesses and work with it for optimal function. Different treatments use different strategies for reaching this understanding. For some people, using words and talking is important. For others, using art or other forms of expression can help emotional understanding and processing. It is not easy to predict what will work, when and for whom. Often for severe cases that need inpatient treatment, a variety of strategies are used.

There are a range of treatment approaches available at the Eating Disorders Service (EDS) Plymouth, including guided self-help (GSH) based on a cognitive behavioural framework, cognitive behaviour therapy (CBT), cognitive analytic therapy (CAT), psychodynamic therapy, interpersonal therapy (IPT), individual integrative counselling, drama therapy, art therapy and family therapy.

The Plymouth Eating Disorders Service accepts referrals from the population of Plymouth, South Hams, West Devon, Teinbridge and Torbay. Upon receiving a referral from an individual or their worker, EDS will send out a number of forms to be completed by the person with the eating difficulty. These include a number of psychometric measures such as the Eating Attitudes Test, Eating Habit Checklist, General Halth Questionnaire and the Borderline Scale Inventory. Once these completed forms have been received by EDS, the individual will be invited to meet with either the clinical manager or the program manager for an initial semi structured interview to determine the nature and severity of their eating difficulty. Information is also obtained regarding clients’ medical/physical, psychological and social support. Following this initial assessment, EDS will determine which type of therapy (CBT, CAT, art therapy, etc) would be best suited to the individual based on a number of criteria.

New forms of treatment

New forms of treatment are being developed and tested by the Section of Eating Disorders at the Institute of Psychiatry and other research groups.

One research project is currently piloting a new treatment for the most severely disabled group of people with anorexia who require repeated inpatient admissions to survive. The therapies involve tackling the factors that researchers have found instrumental in the maintenance of anorexia: perfectionist/rigid personality traits; anxious/avoidant personality traits; different ways of processing thoughts and emotions; beliefs about the value of self-starvation in helping them manage difficult emotions and relationships; and an unhelpful response of people close to them.

Another project is piloting manual-based and computerised cognitive behavioural based therapies for young people with bulimia.

Multi-family therapy has been developed by the IoP research team and is now being formally evaluated. Multi-family therapy involves several families working together to share knowledge, skills and experience of living with anorexia. They come together for a week, followed by a further 4 to 5 one day meetings at 4-8 week intervals. Individual family meetings are scheduled between group meetings as needed.

Visit www.eatingresearch.com pages to find out more about new treatments being developed and tested.

Working with families

Most good practice in the UK recognises that it is helpful to work with the family as a team to overcome the problems caused by the eating disorder. The exact way in which this team work occurs varies and depends on the patient (it is more usual to work closely with the family in younger cases) and the therapeutic team – some units have family therapy, others offer parental counselling with our without specific advice for carers, others offer family group treatments.

For example, research suggests that the treatment of adolescents that targeted family based interventions, aimed at mobilising the family’s own resources, are an effective alternative to inpatient treatment for younger people with anorexia, lead to high rates of long term recovery and low rates of relapse.

Most of the work on developing family based treatments for anorexia was originally undertaken by researchers working at the Institute of Psychiatry and Maudsley Hospital.

However, they may be various reasons why families are sometimes not involved in treatment. There may have been unsuccessful or aversive family therapy in the past; the patient may feel that she is being selfish in asking the family to come, and that the illness is her responsibility and must cope alone; the patient may have communication problems and find the transition from a parent/child to adult/adult relationship difficult; there may be unrealistic expectations of change. In the long term, it is important for families to attempt to help rebuild an individual’s self-esteem, and to encourage honest and open expression of thoughts and feelings in all family members.

The Maudsley Method

This is a form of family therapy developed and evaluated between 1970 and 1980 at the Maudsley Hospital. The Maudsley Method of working with the family was found to improve the outcome for adolescents who had had anorexia nervosa for less than three years

The original Maudsley Method was less effective for families with an older child or those with a protracted illness, so the treatment has been modified over time for these groups and has led to the development of multi-family therapy.

Continuity of care

This can be a problem if someone needs high intensity care not available locally. Another problem is that it is common for someone with an eating disorder to be attending university away from home. Most universities have student counselling services and a student health facility. It is usually possible to contact the department of student counselling through student welfare. There may also be university based self help-groups. Student counselling usually requires the person with a problem to make the first move. Given the typical age of onset of anorexia, people often move from child and adolescent to adult services, or between home and university health services. This can result in fragmented or suboptimal care. Likewise, transitions between specialist inpatient and follow up care can be less than optimal.

Compulsory treatment

Sometimes, the strength and power of an individual’s eating disorder is extreme. The eating disorder impairs the individual’s ability to make rational decisions about their treatment. It is therefore occasionally necessary, when life or health is at risk, to admit a patient to hospital to be treated and compulsorily fed under the Mental Health Act. Please see MHA page.

Is it possible to recover from an eating disorder?

Many people are able to make a recovery from the physical, psychological and social repercussions of an eating disorder. However, many are unable to shake off all their abnormal attitudes to food, eating and body size and shape.

Even after a two to three year period of recovery, relapse can occur, particularly after stressful events, or if weight loss has been triggered: after childbirth, for example, when there is increased stress of a new baby combined with weight changes after birth. However, people who have gone through recovery are often aware of the danger signs and can stop the illness getting a severe grip on them. Other people continue to have rather rigid eating habits and never eat as much or as freely as others.

Many people have unrealistic expectations and think they can recover from the illness after a few months. Unfortunately, once eating disorders have taken hold, you need to think in recovery in terms of years rather than months. On average, it takes six years to recover from anorexia. After five years, approximately half of people with anorexia will have recovered, 30 per cent will remain quite severely affected by their illness and 20 per cent will be underweight and without their periods.

People who have recovered from eating disorders often talk of the experience as a journey, or a long process of change during which they learn new, healthy coping mechanisms in place of dysfunctional ones they had previously relied on.

The more weight that has been lost and the more extreme the emaciation, the longer the recovery takes. Similarly, recovery is much harder the longer the illness has gone on before treatment starts, and if the illness has failed to respond to several attempts at treatment.

Those individuals who had childhood problems such as school refusal and emotional problems, or who find it difficult to make friends, or who have experienced family difficulties, find it harder to make a recovery.

Research with people who have made a full physical recovery (in terms of weight gain and reproductive function), shows that there are residual abnormalities in their response to stress. It is uncertain whether such abnormalities preceded the illness and were part of the risk factor to develop the illness, or if they are a scar from the illness. Restoring regular eating

Please consult with a dietician or nutritionist before using these meal plans due to the risk of “ Re-feeding Syndrome ” following a period of starvation. The plans are included here for information purposes only.

This menu is planned for you to use for a few days only, while you get used to eating regularly. If you have not eaten very much for some time, it may be difficult for your body to deal with food at first. This meal plan is designed to give your body a gentle re- introduction to food, so that all the body systems that deal with food can gradually return to full normal working. It will help to correct any abnormalities in your blood tests.

The most important things that you need most as you begin to restore healthy eating are:

Phosphate. You need a high phosphate intake as you slowly increase the amount you are eating. It is important for keeping muscles working, especially the heart muscle. Milk and foods made from milk, like yogurt, custard and cheese, are high in phosphate. (Note: some brands of soya milk are very low in phosphate, so it is not a suitable substitute) Calcium. Calcium can help protect and strengthen your bones. Milk and foods made from milk, like yogurt, custard and cheese, are high in calcium. Potassium. Blood potassium may be low if you have not been eating well. Like phosphate, it is essential for muscle function. Fruit, fruit juice and vegetables are high in potassium. Fluid. Every cell in your body needs water to work properly, so being dehydrated can make you feel quite unwell. You will see that the meal plan has a lot of milk and milk-based food, fruit juice and fluid, to make sure you get these essential elements in your diet. You will also need a vitamin and mineral supplement. The meal plan suggests having regular small meals and snacks, so you do not have to eat too much at one time. The foods are easy to eat and digest, to help make sure eating them is not too tiring or stressful.

What will happen when you follow the plan?

Your body will retain more fluid to restore its healthy fluid balance. This may make your weight increase quite quickly, but this will not last for more than a few days. After about a week, this gain will slow down, and you may even lose a little weight as the amount of fluid re-adjusts and settles to normal. You should feel better when your body has restored its normal amount of fluid. Eating a little more food will give all your tissues the fuel they need to work. You should feel warmer, and have more energy. You will then begin to re-build new, healthy tissue. This meal plan does not provide enough food to do more than begin this process, so you will soon need to increase your eating to continue to improve your nutrition and your health. Restoring healthy eating

This meal plan is for you to use to improve your nutrition and move towards a healthy weight. It is designed to achieve weight gain at a rate of about 0.5 kg per week, but this does vary from one person to another. It provides all the essential nutrients that you need to restore healthy tissue. You may want to move onto it gradually. You should try to make sure you have all the milk and milky foods, and the fruit juice, from the beginning. You can use these foods to adjust the plan:

the toast at breakfast the cereal bar at lunch the food with the snack in the afternoon (but you must have the milk drink) the biscuits in the evening.

At first you could leave them out, then add them if your weight gain slows down too much. Discuss this with your therapist.

You may sometimes need a little more to eat, especially on days when you are more active. If you find that you need to eat more to keep your weight gain progressing, you could have the crisps and the cereal bar at lunch, and two choices from the snack list in the afternoon. Discuss this with your therapist. Medical risks associated with eating disorder behaviours*

Amenorrhea - Loss of Menstrual Cycle (due to lack of secreting hormone, Oestrogen, by the ovaries). Loss of the menstrual cycle can also lead to Osteopenia and Osteoporosis.

Anemia - this makes the oxygen transporting units within the blood useless and can lead to fatigue, shortness of breath, increased infections, and heart palpitations.

Arthritis (degenerative) - can be caused by hormonal imbalances and vitamin deficiencies as well as increased stress on the joints in individuals who suffering Compulsive Overeating.

Barrett's Esophagus - associated with Cancer of the esophagus and caused by Esophageal Reflux, this is a change in the cells within the esophagus.

Cancer - of the throat and voice box (Larynx) due to acid reflux disorders.

Chronic Fatigue Syndrome - continuous and crippling fatigue related to a weakened immune system.

Callused or bruised fingers - this is caused by repeatedly using the fingers to induce vomiting.

Diabetes - high blood sugar as a result of low production of insulin. This can be caused by hormonal imbalances, hyperglycemia, or chronic pancreatitis. Elevated Blood Sugar/Hyperglycemia - can lead to diabetes, liver and kidney shut down, circulatory and immune system problems

Cramps, bloating, constipation, diarrhea, incontinence - increased or decreased bowel activity.

Dry Skin and Hair, Brittle Hair and Nails, Hair Loss - cause by Vitamin and Mineral deficiencies, malnutrition and dehydration.

Death caused by any of the following or any combination of the following: heart attack or heart failure; lung collapse; internal bleeding, stroke, kidney failure, liver failure; pancreatitis, gastric rupture, perforated ulcer, depression and suicide.

Dental Problems, Decalcification of teeth, erosion of tooth enamel, severe decay, Gum Disease - will be caused by stomach acids and enzymes (from vomiting); vitamin D and calcium deficiencies, and hormonal imbalance. Can also be due to the lack of exercise the teeth can get from the process of eating certain foods. Dental problems can sometime indicate problems with the heart.

Dehydration - caused by the depletion or lack of intake of fluids in the body, or by restriction of carbohydrates and fat. Restriction/Starvation, vomiting and laxative abuse are the primary causes in sufferers of Eating Disorders. Symptoms include dizziness, weakness, or darkening of urine. It can lead to kidney failure, heart failure, seizures, brain damage and death. Depression - mood swings and depression can be cause by physiological factors such as electrolyte imbalances, hormone and vitamin deficiencies, malnutrition and dehydration. Living with the Eating Disorder behaviors themselves will cause depression. Depression can also lead the sufferer back into the cycle of the Eating Disorder (or may have initially been the problem before the onset of the ED). Stress within family, job and relationships can all be causes. There are also a percentage of people born with a pre- disposition to depression, based on family history. N.B. Risk of suicide may increase when the individual begins to increase their BMI during recovery.

Digestive Difficulties - a deficiency in digestive enzymes will lead to the bodies inability to properly digest food and absorb nutrients. This can lead to malabsorption problems, malnutrition and electrolyte imbalances. Diseases that may be triggered by a history of an Eating Disorder include: Celiac Disease (gluten sensitivity), and Crohn's Disease.

Disruptions in Blood Sugar Levels - Low Blood Sugar/Hypoglycemia: can indicate problems with the liver or kidneys and can lead to neurological and mental deterioration.

Easily Bruising Skin - Vitamin Deficiencies that decrease the body's ability to heal itself, low blood pressure, low platelets count and/or extreme weight loss will all lead to easily bruised skin that can take a long time to heal.

Edema - swelling of the soft tissues as a result of excess water accumulation. It is most common in the legs and feet of Compulsive Overeaters and in the abdominal area of Anorexics and/or Bulimics (can be caused by Laxative and Diuretic use).

Electrolyte Imbalances - electrolyte are essential to the production of the body's "natural electricity" that ensures healthy teeth, joints and bones, nerve and muscle impulses, kidneys and heart, blood sugar levels and the delivery of oxygen to the cells.

Esophageal Reflux - Acid Reflux Disorders - partially digested items in the stomach, mixed with acid and enzymes, regurgitates back into the esophagus. This can lead to damage to the esophagus, larynx and lungs and increases the chances of developing cancer of the esophagus and voice box.

Gastric Rupture - spontaneous stomach erosion, perforation or rupture.

Gastrointestinal Bleeding - bleeding into the digestive tract.

Heart conditions - Bad Circulation, Slowed or Irregular Heartbeat, Arrhythmias, Angina, Heart Attack - There are many factors associated with having an Eating Disorder that can lead to heart problems or a heart attack. Sudden cardiac arrest can cause permanent damage to the heart, or instant death...electrolyte imbalances (especially potassium deficiency), dehydration, malnutrition, low blood pressure, extreme orthostatic hypotension, abnormally slow heart rate, electrolyte imbalances, and hormonal imbalances can all cause serious problems with the heart, high blood pressure, accumulation of fat deposits around the heart muscle, high cholesterol, decreased exercise due to lack of mobility, diabetes and hormonal imbalances can all lead to serious problems with the heart.

High Blood Pressure, Hypertension (more common in those with Compulsive Overeating and/or Binge Eating Disorder) - elevated blood pressure exceeding 140 over 90. Can cause: blood vessel changes in the back of the eye creating vision impairment; abnormal thickening of the heart muscle; kidney failure; and brain damage.

Hyperactivity - manic bouts of not being able to sit still.

Hyponatremia (related to "water-loading") - as stated above, electrolytes are essential to proper body functioning. Drinking too much water (more than eight, eight-ounce glasses in less than twelve hours), can cause Hyponatremia (not enough sodium in the blood), especially in someone already malnourished or dehydrated. Hyponatremia can cause fluid in the lungs, the brain to swell, nausea, vomiting, confusion and even death.

Impaired Neuromuscular Function - due to vitamin and mineral deficiencies (specifically potassium), and malnutrition.

Infertility - the inability to have children. Caused by loss of menstrual cycle, and hormonal imbalances. Malnutrition and vitamin deficiencies can also make it impossible to succeed with a full-term pregnancy, and can increase the chances significantly of a baby born with birth defects.

Insomnia - having problems falling and/or staying asleep. Kidney Infection and Failure - your kidneys "clean" the poisons from your body, regulate acid concentration and maintain water balance. Vitamin Deficiencies, dehydration, infection and low blood pressure increase the risks of and associated with kidney infection thus making permanent kidney damage and kidney failure more likely.

Lanugo - (soft downy hair on face, back and arms). This is caused due to a protective mechanism built-in to the body to help keep a person warm during periods of starvation and malnutrition, and the hormonal imbalances that result.

Ketoacidosis - high levels of acids that build up in the blood (known as ketones) caused by the body burning fat (instead of sugar and carbohydrates) to get energy. It can be a result of starvation, excessive purging, dehydration, hyperglycemia and/or alcohol abuse (it can also be a result of uncontrolled or untreated diabetes). It can lead to coma and death.

Low Blood Pressure, Hypotension (more common in those with Anorexia and/or Bulimia) - cause by lowered body temperature, malnutrition and dehydration. Can cause heart arrhythmias, shock or myocardial infarction.

Mallory-Weiss tear - associate with vomiting, a tear of the gastroesophageal junction

Liver Failure - the liver aids in removing waste from cells, and aids in digestion. You cannot live without your Liver. Fasting and taking acetaminophen (drug found in over-the-counter pain killers) increases your risks for Liver damage and failure. Loss of menstruation and dehydration (putting women at risk for too much iron in their system), and chronic heart failure can lead to liver damage or failure.

Low Platelet Count or Thrombocytopenia – Caused by low levels of vitamin B12 and Folic Acid, and/or by excessive alcohol. It may also be an indication of a suppressed immune system or immune dysfunction.

Lowered body temperature - Temperature Sensitivity - caused by loss of healthy insulating layer of fat and lowered blood pressure.

Malnutrition - caused by undereating or overeating. The word malnutrition indicates deficiency for energy, protein and micronutrients (e.g. vitamin A, iodine and iron) either singularly or in combination. It can cause severe health risks including (but not limited to) respiratory infections, kidney failure, blindness, heart attack and death.

Muscle Atrophy - wasting away of muscle and decrease in muscle mass due to the body feeding off of itself.

Osteopenia - Below normal bone mass indicating a calcium and/or vitamin D deficiency and leading to Osteoporosis. * Hormone imbalance/deficiencies associated with the loss of the menstrual cycle can also increase your risks of Osteoporosis and Osteopenia.

Orthostatic Hypotension - sudden drop in blood pressure upon sitting up or standing. Symptoms include dizziness, blurred vision, passing out, heart pounding and headaches.

Osteoporosis - Thinning of the bones with reduction in bone mass due to depletion of calcium and bone protein, predisposing to fractures.

Paralysis - transient (or temporary) paralysis -- extreme weakness of muscles or not being able to move at all -- Caused by low levels of potassium, and/or the degeneration of nerve cells, in the spinal cord or in the brain, which have been deprived of essential nutrients. Left untreated, periods of paralysis may happen more frequently and more severely, lead to permanent muscle weakness, and even result in death.

Peptic Ulcers - aggravated or made more severe by increased stomach acids, cigarette smoking, high consumption of caffeine or alcohol

Polycystic Ovarian Syndrome - a study a few years ago suggested that people with Eating Disorders were at an increased risk for developing Polycystic Ovarian Syndrome (PCO), and that recovery from the Eating Disorder should be part of treatment for PCO.

Problems during pregnancy - including potential for high risk pregnancies, miscarriage, still born babies and death or chronic illness from minor to severe, in children born (all due to malnutrition, dehydration, vitamin and hormone deficiencies).

Refeeding Syndrome (related to treatment) - Starved or severely malnourished patients can undergo life-threatening fluid and electrolyte shifts following the initiation of aggressive nutritional support therapies. This phenomenon is known as "refeeding syndrome" and can occur in patients receiving either enteral (tube feeding) or parenteral (intravenous feeding) nutritional support. To avoid the development of the refeeding syndrome, nutrition support in patients at risk should be increased slowly while assuring adequate amounts of vitamins and minerals. Organ function, fluid balance and serum electrolytes (especially phosphorus, potassium and magnesium) need to be monitored daily during the first week and less often thereafter.

Reflux can sometimes become severe enough that food cannot be kept down at all and medical attention should be sought immediately.

Seizures - the increased risk of seizures in Anorexic and Bulimic individuals may be caused by dehydration, hyperglycemia or ketoacidosis. It is also possible that lesions on the brain caused by long-term malnutrition and lack of oxygen-carrying cells to the brain may play a role. SOME type of antidepressants can increase the risk of seizure and usually carry a warning against prescribing them to people with Eating Disorders, unless the benefits significantly outweigh the risks.

Swelling - in face and cheeks (following self-induced vomiting).

Tearing of Esophagus - caused by self-induced vomiting

TMJ "Syndrome" and Related TMJ Problems - degenerative arthritis within the tempero- mandibular joint in the jaw (where the lower jaw hinges to the skull) creating pain in the joint area, headaches, and problems chewing and opening/closing the mouth. Vitamin deficiencies and teeth grinding (often related to stress) can both be causes.

Weakness and Fatigue - caused by generalized poor eating habits, electrolyte imbalances, vitamin and mineral deficiencies, depression, malnutrition, heart problems.

* Specific books used for technical reference were as follows:

Abraham, S. & Llewellyn-Jones (1992) Eating Disorders, The Facts Oxford University Press, New York.

Balch, J. & Balch, P. A. (1990) Prescription for Nutritional Healing Avery Publishing Group, Inc. Garden City Park, New York.

RxMed - Website for Family Physicians http://www.rxmed.com/