Irwin Unit. The Eating Disorder Unit Handbook. A Guide for Young People and Families

Irwin Unit The Eating Disorder Unit Handbook A Guide for Young People and Families Irwin Unit (Eating Disorder Unit) Parkview Clinic 60 Queensbridge Road Moseley Birmingham B13 8QE 0121 243 2008 Dr David Rothery (Consultant Psychiatrist): secretary 243 2015 Dan O Mara (Ward Manager): 243 2008/2039 bch.nhs.uk (in development) v5 03.12 DO 1

Contents Welcome and Introduction page 3 What is the purpose of this handbook? page 3 Theoretical Basis for Treatment page 4 Externalising the Illness page 4 How the Eating Disorder Unit Works: Who s Who page 5 Phased Treatment Programme Approach page 6 Weight Restoration Programme page 7 Mealtimes and the Dining Room page 8 Rules around Eating, Mealtimes and Diet page 9 Dining Room Seating Arrangements page 12 Prescribed Rest Times page 13 Family Therapy in the Eating Disorder Unit page 14 Family Supported Meals and Drinks page 15 The Timetable page 16 Expectations page 17 Frequently Asked Questions page 17 Visiting Times page 18 Useful Contacts page 19 Comments and Quotes from Young People and Families page 19 Further Reading and Support page 20 Feedback Slip page 20 2

Welcome and Introduction We would like to welcome you to the Irwin Unit, the Eating Disorder Unit at Parkview Clinic, part of the Birmingham Children s Hospital NHS Foundation Trust. There is a lot to learn about being here whether you are a young person, a parent, a sibling or a grandparent and we hope this handbook provides a good foundation of information on which to build as you all progress through the admission. As family members we expect that you take part in everything that the unit has to offer and fully engage in the treatment available. Recovery depends on us all working together as a team. What is the purpose of this handbook? This handbook is to help young people and families on the Irwin Unit at Parkview Clinic to understand the principles of care and treatment and to provide a practical guide about what life will be like on the Irwin Unit and the things you will be involved in during the admission. It will focus on some of the practical ways the multi-disciplinary team manage a group of young people with eating disorders on a day to day basis (the dining room, rest times, rules and boundaries, timetables and structure) as well as providing a explanation of theoretical principles of the care programme and how group work and family therapy are central themes to the treatment package. Anorexia Nervosa is a very serious life threatening illness. In fact, it has the highest mortality rate of any mental illness. There is a great deal of written information available about anorexia; its symptoms, causes, treatments and advice. Please refer to the further reading list at the end of this booklet for some useful publications and links about eating disorders. Many young people admitted to unit will have a diagnosis of anorexia nervosa but we also provide assessment, care and treatment of other eating disorders, including pervasive refusal-type disorders, and restricted eating associated with autistic spectrum disorder. A treatment approach will be formed and adapted depending on the diagnosis but will usually follow the majority of the weight restoration principles (see page 7). 3

Theoretical Basis for Treatment The Irwin Unit functions using many of the principles of the Family-Based Treatment model (or the Maudsley Approach). This is, in brief, a way of working with young people with eating disorders and their families that seeks to prevent or limit hospitalisation by assisting the parents in their efforts to help their child/adolescent in his/her recovery from the eating disorder, and to return him/her to normal child/adolescent development. This model of care has the best evidence base currently available for treatment of eating disorders and is proven to be effective in reducing admission lengths, preventing relapse and reducing re-admission rates and is practised widely nationally and internationally. In practice, the team on the Irwin Unit will work very closely with the young person and their family to help rebuild confidence, creating a context for empowerment for the parents to reclaim control of the feeding/eating of their daughter/son. The work that occurs on the unit is intensive. Treatment takes place in 3 distinct phases (page 6) incorporating a purposeful weight restoration programme (page 7) which involves a weight increasing diet and prescribed rest (page 13), family therapy meetings (page 14) on a weekly basis used to generate a shared understanding about the eating disorder and support the family in managing and reducing its influence, family supported meals and drinks (page 15) on the unit from the beginning of the admission supported by staff to help the family help their child return to eating a more ordinary diet, timetable (page 16) that incorporates groupwork focussing on self esteem, body image, healthy eating and cognitive behaviour therapy, education and occupation and appropriate activity. Individual clinical psychology sessions may also be offered if this is felt to be needed by the team and helpful to the young person. All of these are discussed in more detail within this handbook. Externalising the Illness Externalisation is a long word that describes a fairly simple principle that permeates the Irwin Unit ethos. It is a concept that was born of Narrative Therapy that has been adopted by many practitioners as a helpful way for staff, families and young people to understand and cope with illness. To externalise is to separate the eating disorder from the sufferer, by identifying it and speaking about it as a different entity. This is intended to reduce or remove some of the guilt and shame surrounding having an eating disorder and to create a context in which to identify and reduce the influence that the eating disorder has over the young person. It helps young people and families to explore their relationship with the eating disorder and, in doing so, begin to think about how that relationship could be different. This is an important idea because it allows clinicians and parents to adopt both a kind, caring and understanding view of the ill young person with a firm, boundaried and challenging approach to managing the eating disorder. 4

How the Eating Disorder Unit Works Who s who? On admission you will be greeted by a nurse and a doctor who will be conducting the admission process; completing a physical assessment and important paperwork and showing you around the unit. You will hear about many of the things contained in this handbook on the first day (and within the first week). You will be assigned a Named Nurse (with a secondary named nurse) from your first day. This person will be central to your care and a point of contact for you and your family. The named nurse will produce collaborative care plans with you and your family. Care plans are written clinical plans that describe all aspects of your care and are central to day to day treatment. You can see these at any time and will be encouraged to take part in the writing of them. The overall responsibility for your care falls to the Consultant Psychiatrist and he will be present in your main reviews and the weekly mini reviews (see section 6). You may also contact him via his secretary (243 2015) if you wish to discuss treatment or arrangement an appointment. There are several others clinicians who work within the team providing a multi-disciplinary approach, all with different but over-lapping roles. These are an Occupational Therapist, a Clinical Psychologist, a Dietician, Family Therapists, Teachers, Speech and Language Therapist and a Pharmacist, all of whom work together to provide the package of care. We encourage you as a family to have as much contact with the ward team as possible. Please don t wait to be asked. Often families say that staff seem too busy to be interrupted but we are more than happy to talk with you in person or on the telephone as this is part of our job. It is crucial that you feel involved in the care and treatment and you are up to date with progress and involved in decisions. Call the ward anytime (243 2008). 5

Phased Treatment Programme Approach During your admission you will hear a lot about the phases of treatment. This is the language we use to describe what point you are at in your treatment, providing a clear structure and focus for planning care. The admission is spilt into 3 phases of treatment. There are at times, overlaps and differences to what written in the table below but the basic structure of the phased treatment approach is: Phase One Phase Two *Estimated 4-6 weeks Phase Three *Estimated 4-6 weeks Begin weekly family therapy meetings Weight and BMI identified Weight restoration begins (1kg/week) Assessment of mental state Assessment of physical health Assessment of risk Ward based teaching Consideration of Occupation Therapy, Social Communication, Social Work assessment Dietetic advice: diet plan made Clarity of treatment plan with Community CAMHS team Full inclusion on EDU timetable Parents begin supported meals and drinks Beginning of some time off unit and short home leave Continue weekly family therapy meetings Continue consistent weight gain (1kg/week) Treatment informed by previous assessments Alter physical monitoring based on physical state Start attending Willows Centre (school) More regular family supported meals/drinks More time away from unit with family; increase/extend home leave Monitor dependency around eating Ensure community CAMHS colleagues are regularly attending review meetings Continue weekly family therapy meetings (focus on transition) Increasing time away from unit; up to full weekend leave Monitor independence around eating Reach healthy weight/bmi Set discharge date Ensure community CAMHS colleagues are fully on board and working closely with the family 6

Weight Restoration Programme Young people coming into the Eating Disorder Unit will be told in clear and non-negotiable terms that there is an expectation that they comply with the rules and boundaries around eating, rest and weight gain. The purpose of this section is to provide some clarity for young people and families about what exactly is expected of inpatients on the unit. It is crucial that all young people and families follow these rules in order to maintain a predictable, consistent and successful therapeutic atmosphere. It is important to state that although most the packages of care provided for young people will have some identical themes, each admission is treated as unique and care is provided accordingly. There may be differences that feel unfair or unequal at times to some young people. These potential differences are inevitable and should be explained as a possibility on admission. Weight Gain and Weighing Young people admitted to the unit are told that their condition is extremely serious and they are expected to eat and drink a weight gaining diet to reduce this risk. This is clearly a hugely important part of the programme and it begins as soon as the young person is admitted. We expect that each young person gains around 1kg per week. This will be monitored by weighing all young people on Monday and Friday every week. The weighing will take place in the privacy of the clinic room with nursing staff. We ask that young people are weighed in their pyjamas/underwear first thing in the morning before breakfast begins. The young person and their family will be regularly updated on progress with weight gain within weekly family meetings and conversations with the nurses. Please call the unit at any time for an update. If 1kg a week is not attained the diet will be increased. It is important that weight gain occurs at this rate in order to minimise length of stay and allow the young person to return to a healthy state of body and mind as soon as possible. Monday mornings are when staff will adjust diet sheets based on changes in weight since the previous Monday. The healthy weight range for teenagers and adults in the United Kingdom is set at 20-25 Body Mass Index (BMI) which is calculated by weight in kg divided by (height in metres x height in metres). As a service we acknowledge a healthy weight range (20-25 BMI) and usually aim for BMI 20 as a target. 7

Mealtimes and the Dining Room Staff working on the unit will be intensely involved in every meal, snack and drink on a daily basis. It is imperative for the functioning of the therapeutic programme that meal times are well managed and young people start and finish their food and drink within an allotted time. Overrunning meals will not only impact on that particular young person but potentially on the whole patient group as it will interrupt the therapeutic timetable which includes essential groups, meetings, appointments and activities. The meal and snack times are as follows: 0800 Breakfast 30 minutes (20 min cereal & 10 min toast) 10 mins for supplement replacement if required 1030 Mid-morning snack 10 minutes 5 mins for supplement replacement if required 1200 Lunch 40 minutes (25 min main & 15 min dessert) 10 mins for supplement replacement if required 1530 Mid-afternoon snack 10 minutes 5 mins for supplement replacement if required 1700 Tea 30 minutes (20 min main & 10 min dessert) 10 mins for supplement replacement if required 2030 Supper 20 minutes 5 mins for supplement replacement if required 2130 Last drink 10 minutes 8

Rules around meal times, eating and diet Staff will work hard to ensure these standards are adhered to in order to provide a fair, consistent environment and clear approach to managing eating disorders. Although it may appear a bit overwhelming that there are a lot of rules, we have found in practice that having a very organised and disciplined approach to mealtimes does result in containment and consistency of care a) All young people have a diet sheet that is monitored and updated regularly by the named nurses and, if necessary, the dietician. This is kept in the diet sheet folder and is referred to several times a day by staff serving food and drinks. All young people are allowed to choose 2 specific dislikes which are then recorded on the diet sheet. Important additions to the daily diet such as cheese and milk cannot be dislikes. b) All meals and snack are completed in the dining room. c) All young people are expected to attend the dining room for meals and drinks on time. Any periods of lateness will be added to the end of the rest time following that meal (or the end of the subsequent rest time). d) Young people are not to bring items into the dining room (such as ipods, blankets, teddy bears, magazines). It may be agreed with a named nurse, however, that one item used as a supportive tool is allowed in the dining room (such as a written supportive message or picture). Any such agreements will be recorded in a care plan to ensure all the staff are aware. e) Nursing staff serve all the food and drinks to the young person at all times; unless it is part of an individual care plan to do differently (e.g. parents are preparing and serving food or a young person pouring their own drinks). Food is served in exact accordance with the diet sheet/menus. f) The unit provide all the cups, cutlery, plates and bowls. Young people are asked not to bring any of their own items. No straws are allowed for drinks. The use of condiments (salt, pepper, ketchup, salad cream and vinegar) must be carefully monitored by the staff to avoid misuse (to spoil food flavours). g) Each portion size is judged by the staff member serving it. A full portion for a young person should be what the staff member considers to be a normal adult portion (not smaller or larger). Portions sizes will therefore vary as would occur in other settings such as restaurants. Parents will be guided by staff on portion sizes when feeding their child in family supported meals. Some meals, such as sandwiches at teatime have standard portion sizes, however, and will not vary. 9

h) Young people have 30 minutes to complete breakfast and tea and 40 minutes to complete lunch. Main meal time limits are split to encourage a steady and sensible rate of eating (see pg 8). Drinks/snacks outside main meals are to be completed in 10 minutes, supper in 20 minutes. If a young person is reluctant or finding it difficult to attend for meals and snacks on time it may be appropriate to begin her/his allotted time from when she/he is expected to start as opposed to when they actually start to discourage lateness. i. If a young person does not finish the meal or drink in time, whatever is left (rounded up to the nearest quarter portion) will be replaced with a supplement drink (Fortisip). For example, if a young person has less than a quarter of their full meal left over, approximately a quarter of the calories of the full meal will be presented as a supplement drink. The young person has 10 minutes to complete this. Quantities of supplement drink are pre-calculated by our dietician. The aim of the treatment is to encourage normal eating patterns and behaviours whilst being mindful about not creating an over reliance on a supplement diet. ii. iii. If a young person manages neither the meal nor the supplement replacement within the allotted time then the meal ends. It is imperative that the meal/snack does not run over the allotted time so that subsequent unit activity can continue on time as planned. The uncompleted meal/snack (and its extent) is recorded and used as an opportunity for subsequent discussion with the young person. The team will respond with action that is proportionate to the seriousness of the situation. Multi-disciplinary discussion and/or meeting about an appropriate course of action will then take place at the earliest opportunity. A range of measures are then considered; meeting with the young person and parents to emphasise the importance of compliance with the programme, reassessing/removing weight related goals, moving to a higher dependency table, artificially feeding using a nasogastric tube or even discharge. It is most important for the team and parents to respond in some way to diet being missed. Not responding at all could create problems for future management of the illness. Collaboration between the team and parents is crucial at these times. i) Staff are mindful at all times of the influence of the eating disorder in the dining room and around the unit. It can show itself in the avoidance of calories, creating difficulty in choosing appropriate mouthfuls of food and encouraging the young person to negotiate over portions sizes, amongst others. Staff recognise and are familiar with the repertoire of typical anorexic eating behaviours so that they can be highlighted, prevented and subsequently discussed. No such behaviours are allowed. Examples are squeezing and squashing food, wiping food on tissues, clothes, fingers and furniture, dropping food on the floor, hiding food in pockets or under the table and leaving amounts of food, however small, on the plate. Staff will replace any amount of food missed with a reasonable amount of the same or similar food. 10

j) All food and drink is provided by the unit and not to be brought in by family unless part of an agreed family meal or treatment plan. k) Staff are cautious about giving extra drinks and consider whether this is a choice made by the eating disorder (to take away flavour of food or to water-load in order to alter true weight, for example). Extra drinks are not forbidden but are not allowed at mealtimes. No caffeine drinks are allowed at all unless the young person is at the healthy weight and it is agreed by the team. Extra food may be an unlikely request. If a young person asks for extra food this should be discussed with a dietician before reaching an agreement. l) A variety of food must be chosen from the available options on the daily menus. Young people are asked not to choose the same item several times a week as this restricts the varied diet and build rigidity (e.g. carbohydrate choices, cereals, puddings). Nursing staff carefully monitor the menus with young people on a daily basis. Snacks outside main meals are also varied to encourage more typical eating habits. m) A young person s diet choices must include a balance of protein, carbohydrates, vitamins and minerals: Breakfast is cereal and toast. The young person may choose the type of cereal and the type of bread for toast. All young people will have full fat milk (whilst under a healthy weight) on cereal and for milk drinks, and butter/spread on all toast and sandwiches. Lunch consists of a balance of protein, carbohydrates, vitamins, minerals, fat and sugar. All hot meals must include a choice from each of the three main sections (unless the main selection is a large pasta dish; then two servings of vegetables). Tea is a cold meal of sandwiches and a pudding. Young people can choose the type of bread and the filling from the menu selection. All sandwiches will have butter/spread without exception. Young people must include a variety of sandwich fillings through the week. Drinks are had with every meal as well as 4 snack-times a day (7x300ml drinks). Drinks are not measured but are served in unit cups filled by the staff member. At least 3x300ml of the daily 2100ml should be full fat milk. 11

Dining Room Seating Arrangements The dining room will be arranged in 4 tables of 4 places each. Staff decide where the young people will sit depending on their stage of the programme, their dependence/independence and the getting the right mix. Young people will move tables depending on their abilities and progress. The tables will be separated into three categories, as follows. Intensive support table. Young people who have missed aspects of their diet recently or are struggling a great deal to complete their meal/snack in a timely manner are at this table. Staff will provide intensive and continuous verbal support throughout the meal. Every occurrence of inappropriate/anorexia-driven behaviour will be pointed out by staff. It may be necessary to swap staff on this table regularly due to the intensity of the work. Meals/snacks at this table will feel intense and hard work. This is to help young people progress in general and also to act as a motivating factor to move on to a lower dependence table. Conversation with other tables is kept to a minimum. Quiet support table. Young people on this table continue to require support during meals and snacks but to a lesser extent than the intensive support table. The atmosphere at this table is less intense and a little more relaxed, conversation can be more varied and fun. Anorexic behaviours are still pointed out but there will be times when staff take the pressure off in comparison to the intensive support table. Independence table. Young people sitting at this table are able to complete meal and snacks with minimal support from staff. It is likely that they are approaching the end of their admission and are having many meals on and off the unit with parents. The intention is for this table to be one that young people aspire to be at. Often staff will not have to sit at this table at all but may choose to in order to be sociable. Young people sitting at this table are expected to not to engage in typical anorexic behaviours. 12

Prescribed Rest Times Adequate rest is a highly important aspect of treatment to aid physical health recovery and the weight restoration process. This occurs on the unit in the form of periods of prescribed rest. This is a non-negotiable arrangement consisting of 30 minutes after every main meal, snack and drink. Young people also have to sit for 3x2 hour periods of prescribed rest every day; 0930 1130, 1330 1530 and 1800 2000. Staff are present during these periods to ensure young people rest appropriately, and to engage with young people in discussion, passive activity and occupation. If a young person s BMI is <13 and/or their physical health is less stable there may be clinical justification for continuous rest time. Outside of prescribed rest times young people are expected to sit as appropriate to normal life. Exercise is not allowed at any time in any form whilst young people are inpatients on the unit, unless a healthy weight is attained and it is part of an agreed treatment plan. Parents are asked to remain firm and consistent with their daughter/son about the rest times during the visiting times and whilst on home leave. When resting, young people must: a) Sit in a comfortable and restful position on a soft chair. Movement should be kept to a minimum. b) Take part in quiet and passive activities (e.g. reading, listening to music, sewing, puzzles or chatting). c) Sit in the Den (lounge) unless otherwise agreed by staff. d) Respect those who have to sit. It is difficult for most young people to do this so all young people and staff are to be respectful of this time. It is preferable that the Den remains quiet and calm. e) Try to support each other by following these rules giving others confidence to rest rather than encouraging negative behaviour (e.g. moving legs, tensed bodies, getting up unnecessarily, going to the toilet too often). f) Not visit the toilet more than once during the two hour period (for up to 5 minutes). Any more minutes taken will be added to the end of that rest period. 13

Family Therapy in the Eating Disorder Unit What do we mean by Family? Different cultures and different groups of individuals have different ideas about what 'family' means. On the unit we understand 'family' to mean any group of people who care about and care for each other and see themselves as "family". What is Therapy? Therapy is the word we use to describe the support we offer to all young people and their families. The Maudsley Family Based Treatment model to guide this work this approach encourages a working professional partnership between parents and staff. Sharing and pooling parental expertise strengths and resources with the resources and expertise of the staff team. The approach moves through three distinct phases and mirrors what is happening on the ward in terms of pacing and timing. We initially focus on education and support. Helping parents separate out and externalize the anorexic illness from their young person and supporting and extending parenting skills in containing their young person's disordered eating. The model also focused helping parents to gain skill and confidence in re-feeding their child; helping parents take over control of their young person s eating for a time limited period. The second phase is about the young person gradually taking back the control and management of their eating and the third phase explores some of the relationship patterns that operate within the families. These might be pre-existing patterns that may be both helpful and unhelpful or they may have grown up as a way of helping families to accommodate and manage the anorexia. The latter two phases often take place back in the community after discharge. Family Therapy takes place on a weekly basis from admission to discharge. Although we follow the model, we also recognize that each family is unique and will appreciate different emphases in relation to support offered. We always spend time when we first meet with a family working out what support they might need and tailoring our work to fit their particular requirements. This might include, helping to build communication between family members, thinking about the impact of the young person s difficulties on wider family functioning, helping families gain a better understanding of their young person s mental health and eating related issues, exploring existing strengths and skills within the family and thinking with them about how these can be transferred to help cope with their current situation. A lot of our work focuses on helping families work through transitions in relationships and changes in family life. 14

What is the purpose of this family work? We work with family members during this frequently stressful and distressing time to help them stay in touch with their expertise and experience and to help them continue to explore constructive ways to help each other communicate, as stated above combine our knowledge and expertise with a family's own knowledge, sharing and respecting individuals' different perspectives, beliefs, views and stories, and exploring possible ways forward. Who do we work with? We most often work with family groups but we can also work with different combinations of family members or individuals. We also, when appropriate, work with the professional and/or social networks around families. Family Supported Meals and Drinks Parents (and at times extended family members) are asked to take part in supported family meals and drinks within the unit from the early stages of the admission. This is an important part of the Family Based Treatment approach as it allows parents to remain closely involved in the recovery of their child, to maintain and build confidence feeding their daughter or son, to allow staff to monitor and support families through mealtimes and to understand how the eating disorder influences each family member. The named nurse(s) working with the young person will make arrangements with parents about how this may take place. The unit has a total flexibility policy in providing opportunities for these meals and drinks to occur; 7 days a week, at any time of day. It is likely that these will be introduced at a gradual pace in order to maximise success and to provide some respite for families who have been trying to manage the eating disorder at home prior to admission. The meals and drinks will occur in different areas of the unit to where the larger group of young people are eating and/or drinking. Food and drink can be provided by the unit (for the young person) but it is also necessary (at the right time) for parents to prepare, cook and serve food on the unit. Unfortunately, we cannot provide food for family members. 15

The Timetable The timetable is purposeful and intensive. It includes time for education, meaningful occupation/appropriate activity and group-work. The group-work provides a space in which young people can make sense of the impact the eating disorder is having on their lives, targets issues related to body image disturbance and helps young people develop adaptive coping strategies and skills for life. The groups are Bodywise Group, Eating Disorders Group, Emotional Skills Group, Large Group, and Community Group. Music groups and Yoga sessions are also part of the timetable (at times) to positively occupy time with meaningful and peaceful activity. Please look at the notice boards in the main corridor for more information about individual groups and activities. School education is clearly a very important part of any young person s life. This remains a very present feature throughout the timetable; if not involved in a group then the young person will be expected to be in education sessions either ward-based (phase 1) or at our on-site facility, the Willows Centre (phases 2 and 3). Teachers will contact the home school to understand what work was being done prior to admission to allow some continuity. Exams can be taken at Willows if necessary. However, the young person s health is a priority and the pace and volume of school work will not be the same as it would within the mainstream school setting. Family clinic meetings (page 14) also make up part a big part of our weekly timetable. Weekly appointments are offered at 1.30 or 3.30pm on Tuesdays or Thursdays. Whilst we appreciate these times are during typical working hours, engagement in this part of the programme is crucial to the young person s recovery and can influence the timeliness of discharge. You will be invited to these initially by letter. Care-planning and communication centres around two types of clinical meeting, the weekly clinical review (known as mini-reviews) and a 6-weekly meeting (known as the main review). Mini-reviews take place for about two hours every week on a Tuesday morning. Members of the multi disciplinary team attend this meeting to feedback on all patients for the past 7 days, report on ongoing work/assessments and discuss and plan the week ahead ensuring treatment is provided in accordance with the phased treatment approach and the model of care. Main reviews are quite different. Every young person/family has a main review meeting in which the key individuals involved in their care provided a detailed report about interventions and progress to date. A full discussion takes place about the admission so far and a plan is made for the 6 weeks ahead. The young person and parents/carers are invited to attend this meeting. Each main review lasts about an hour. You will receive invitations to the main reviews by letter. Weekend leave becomes an important part of the timetable which will start to occur when weight /physical health is stabilised. This is not only a break from the unit but an opportunity to practice eating together as a family and to challenge the influence of the eating disorder. We ask that you return from weekend leave between 6.00 and 7.00pm to enable staff on duty to talk to you about how leave went and record this adequately in the clinical notes before the end of the afternoon shift. 16

Our expectations of young people admitted to the Irwin Unit 1. To be respectful, polite and friendly to all. 2. To be tolerant of others difficulties. 3. No bullying, sexism, racism, homophobia and any other forms of discrimination. 4. To not act in a violent or aggressive manner, verbally or physically. 5. To not bring items on to the unit that may cause harm; alcohol, drugs, cigarettes, weapons, for example. 6. To work in accordance with the agreed care package and access all opportunities available. What young people and families can expect from the Irwin team 1. A kind, caring, non-judgemental, positive regard for all. 2. Professionalism and integrity. 3. Honesty. 4. Genuine interest in working on the Eating Disorder Unit. 5. Striving for improvements by listening to and acting on feedback. 6. Confidentiality and respect. 7. A polite and welcoming approach. 8. Availability. Frequently Asked Questions What do I bring with me on my first day? All you need to bring is clothing, nightwear, toiletries, slippers and items to keep yourself busy with (e.g. magazines, books, puzzle books, mp3 players). We encourage you not to in large amounts of money or expensive items as the unit cannot be responsible if these are lost or broken. There is no particularly need for money in the early phases of treatment. You may bring your own duvet and pillow case. When do I get to go out or go home? Leave from the unit is an important part of the programme. This will build up gradually as part of the weight related goals that are set by your named nurse(s). It will begin with time at school and drives out with your family and will gradually increase at a manageable pace. Time at will also be gradually introduced towards the end of phase one. Can I use my mobile phone and the internet? You are allowed to have your mobile phone whilst on the unit but we would ask that you (a) turn it off during school, groups and mealtimes and (b) do not take pictures or videos of other young people or staff on the premises. Please follow these simple rules or we may have to ask your parents to take your phone home. We do not have Wi-Fi internet access for personal use but it can be used for school work during education times. 17

Why are visiting times less than some hospitals? Visiting times are planned this way to maintain an organised and contained environment and also to allow the timetable of therapeutic groups, activities and education to occur. Parents may attend the unit for supported meals and drinks outside of these times, however. Will I be forced to stay and forced to eat? Most young people who are admitted here come because their parents and clinicians feel it is essential that they do. All young people are expected to follow the programme of treatment and the food is a major part of the treatment, as is rest. The safest and most sensible way to leave is to engage in the treatment and return to a healthy weight. Will I have my own room? There are a small number of single rooms but these are often used for particular clinical reasons. Most young people sleep in a shared bedroom (with 2 or 3 others). Can my friends visit me? The focus of the work on the unit is to help you and your family. However, if you have a specific request for a friend to visit then you must discuss this with your parents and your named nurse. How long will I be here for? This is perhaps the most common question that people ask. The honest answer is we don t know, unfortunately. However, many admissions will last about 4-6 months. Discharge depends on you and your family being able to confidently manage the eating disorder at home and your community CAMHS team being fully engaged in your treatment. How will I be different when I leave? Our aim is that when you leave you and your family will understand the eating disorder a lot more and feel more confident and able to fight it. You will be at a healthy weight or approaching a healthy weight when you are discharged. We aim for you to be more in control of your life and feel like the influence of the eating disorder has greatly reduced. Visiting times are: 6.00pm 8.00pm on Tuesdays and Thursdays 8.00am 8.00pm on Saturdays and Sundays Visiting Times Note: Family meals and drinks do not have to fit into these times. Families are welcome to do these at any point during the week as long as it is pre-arranged with the staff. 18

Useful Contacts Nursing Office 0121 243 2008 (24/7) Ward Manager (Mon-Fri) 0121 243 2039 Consultant Secretary 0121 243 2015 (9.00 5.00) Main Switchboard (at Parkview Clinic) 0121 243 2000 (9.00 5.00) Main Switchboard (at Birmingham Children s Hospital) 0121 333 9999 (24/7) You can contact the unit at any time day or night, and as often as you like. However, the telephone is not answered between 8.00 and 8.45am, 12.00 and 1.00pm and 5.00 5.45pm to allow for protected meal times. This allows staff on duty to concentrate fully on the young people managing their meals in the dining room. Comments and quotes from young people and families The idea to have the family involvement as a major factor is a brilliant idea as it makes eating with parents more comfortable and less of a dramatic change when you go home Family therapy has been extremely beneficial for my parents as they have come to understand the thoughts and feelings that I have and why I do the things that I do Having parents and family there at times helped me feel safe and less homesick The staff are firm and understanding to the needs of the young people 19

Further Reading and Support 1. Help Your Teenager Beat an Eating Disorder (2004) by James Lock and Daniel Le Grange, Guilford Press 2. Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method (2007) by Janet Treasure, Gráinne Smith and Anna Crane, Routledge Useful Links 1. The Royal College of Psychiatrists www.rcpsych.ac.uk 2. Beating Eating Disorders www.b-eat.co.uk 3. NICE Guidelines for Eating Disorders www.nice.org.uk/cg009 4. Young Minds www.youngminds.org.uk 5. F.E.A.S.T. http://www.feast-ed.org/ The main website for parents which ought to be added to the handbook is F.E.A.S.T, which has been an amazing support for me (a parent) Irwin Unit Feedback Slip your comments are really important to us 1. What is helpful about this handbook? 2. What would you like to change or include in the handbook? Please return this slip to the ward manager when you get the opportunity 20