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Promoting Hope, Opportunity and Personal Control 1 Health and Social Care Regional Mental Health Care Pathway Promoting Hope, Opportunity and Personal Control EATING DISORDERS PATHWAY TO CARE A GUIDE FOR PEOPLE USING SERVICES AND THEIR FAMILY MEMBERS JUNE 2016 2 Promoting Hope, Opportunity and Personal Control 3 Explain how to access eating disorder services Promote Partnership (Working Together) Explain the Steps Involved in Care Support Decision Making Introduction This booklet is specifically for people experiencing an eating disorder and their family and friends. It identifies some of the signs that would indicate that you or someone you love may have an eating disorder. It gives information about how to get help. It also explains what you can expect to happen if you are referred for treatment of an eating disorder. The booklet has been developed by the Eating Disorder Association of Northern Ireland (EDANI) and the Eating Disorder forum with support from people who have experienced an eating disorder, family members and the Regional Eating Disorder Network Group. This booklet is mainly concerned with: • Anorexia Nervosa • Bulimia Nervosa • Atypical Eating Disorder There are other problems with eating such as binge eating, and in children, food phobias, and selective eating which also have psychological causes. People will receive help with these problems if they are referred to mental health services, but it is likely to be from mainstream adult or child and adolescent mental health practitioners rather than a specialist eating disorder service. 4 An eating disorder is a serious mental health condition that results in an unhealthy relationship with food and weight. Eating disorders interfere with many areas of a person’s life, and can have serious physical health consequences. While at the start it might look like a person is just dieting or exercising, people with an eating disorder begin to use food as a coping mechanism to deal with uncomfortable or painful emotions or to help them feel more in control when situations seem overwhelming. The typical image that comes to mind when people think of Anorexia Nervosa is a severely emaciated young man or women. It is true that eating disorders tend to start between the ages of 13 and 25 years, however it is not unknown for it to start in children under 13 years, or to start in people over 25. With Bulimia Nervosa the outward signs may be hard to spot because the person’s weight and body shape may not change. However the behaviours associated with both Bulimia Nervosa and Anorexia Nervosa can have serious consequences for people’s long term mental and physical health. Getting help early means that the condition is easier to treat and some of the long term health problems can be avoided. What are Eating Disorders? Promoting Hope, Opportunity and Personal Control 5 Signs and Symptoms of Eating Disorders There are physical and psychological indicators of eating disorders. Depending on the type of disorder these include: • Preoccupation with food, weight and body • Unrelenting fear of gaining weight • Refusal to eat except for tiny portions • Vomiting frequently after meals • Dehydration • Compulsive exercise • Excessive fine hair on face and body • Distorted body image • Abnormal weight loss • Fluctuating weight loss and gain • Sensitivity to cold • Absent menstruation • Eating alone or in secret • Misuse of laxatives, diuretics, diet pills or emetics • Social withdrawal Physical symptoms include significant weight loss, general lethargy and feeling unwell, weakness and abdominal discomfort. In the longer term people may develop serious problems with their heart, bones and some body organs. Anyone who is pregnant or who has diabetes along with an eating disorder can develop even more complex health problems. Psychologically people with an eating disorder often also experience depression, anxiety, obsessive compulsive disorders or thoughts about suicide. If you or someone you love is referred for treatment of an eating disorder you can expect that the care and treatment you are offered will take into account all of your needs and be tailored very specifically for your individual circumstances. 6 Early Detection Early detection and accepting help will significantly improve the chances of recovery from an eating disorder. To assess if you or someone you know is at risk of having an eating disorder ask the following questions: S Do you make yourself Sick because you feel uncomfortably full? C Do you worry you have lost Control over how much you eat? O Have you recently lost more than One stone in a three- month period? F Do you believe yourself to be Fat when others say you are too thin? F Would you say Food dominates your life? A “yes” answer to two or more of these questions would indicate that an eating disorder may be present. It is however important to remember that eating disorders manifest differently between individuals and even if someone does not answer yes to the SCOFF questions this does not mean they do not have an eating disorder. Promoting Hope, Opportunity and Personal Control 7 Other questions to ask are: • Do you ever eat in secret? • Do you think you have an eating problem? • Do you worry excessively about your weight/ body image? • Do you ever make yourself vomit, over exercise, use laxatives and/or diuretics inappropriately? • Are you obsessive about weighing yourself? If you think you have a problem with eating you should seek help from your GP. At this point you might also want to talk to a local eating disorder support group, helpline or charity. Contact details for eating disorder support groups are listed at the back of this booklet. It is important to be as open and honest as possible with your GP so that they can decide the best action to take for you. They can’t read minds and need you to tell them that you think you may have an eating disorder. 8 Getting Referred If you think you, or someone you know, has an eating disorder the first step is to visit your GP. Your GP will carry out a thorough assessment to rule out any other medical cause for your symptoms, and assess any medical risks. At this point the GP is likely to: • Ask about your attitudes to eating and behaviours • Measure your body mass index (BMI) • Carry out blood tests • Carry out an ECG Once your GP has made an assessment and ruled out a medical cause for your symptoms they will make a referral to either adult mental health services or child and adolescent mental health services depending on your age. If a doctor or therapist treating you for another condition thinks that an eating disorder may be the cause of your health problems they too can make a referral to an eating disorder specialist. Based on the information from the clinician making the referral mental health services will consider the nature and urgency of your case and offer an appointment for a comprehensive mental health assessment. Promoting Hope, Opportunity and Personal Control 9 What Happens Next? GP APPOINTMENT Psychological screening (SCOFF) and physical tests to rule out other health conditions as the cause of weight loss GP referral to mental health services Initial appointment with local mental health service Comprehensive mental health assessment Case allocated to the most appropriate therapist Treatment Recovery Routine Appointment Most cases will be routine and you will be offered an appointment within 9 weeks of your GP making the referral. Urgent Appointments If it is agreed that you need to be seen urgently you will be offered an appointment within 5 working days. A referral may be identified as urgent if: • Your BMI is below 15 • You have experienced rapid weight loss • You are experiencing significant electrolyte imbalance • You have developed cardiac problems • You also have diabetes • You are pregnant Emergency Appointments Mainstream mental health services will see anyone referred as a mental health emergency within 24 hours and can refer on to a specialist eating disorder service if this is appropriate. 10 Mental health services will contact you directly to agree the time and date of your first appointment. They will try to be flexible to get a time and date that suits you. Your first appointment is likely to be with mainstream mental health practitioner. However in some circumstances your GP can refer you directly to the eating disorder service in your local Trust. If you are under 18 years your parent or guardian will also be asked to attend. If you are over 18 years you will be invited to bring a family member or close friend with you to the appointment. First Appointment - What Happens? Promoting Hope, Opportunity and Personal Control 11 The person carrying out the mental health needs assessment will have a structured conversation with you to help identify your needs and explore the options to address these with you. If you are under 18 years your parent or legal guardian will be involved in this discussion. If you are over 18 years you will be asked if you want a relative or close friend to be involved in the discussion. The assessor will apply their professional expertise and draw on research and clinical evidence of what works for people with an eating disorder, and draw on the expertise of a range of professionals within the multi- disciplinary team, to consider the treatment options and agree the best way forward with you. The assessor will give you information and will explain any clinical terms being used. You will have opportunity and time to ask any questions that you may have. Staff may also carry out some physical health checks. This may include taking a blood sample, and you may be referred for an ECG examination of your heart. What to expect during your Initial Assessment 12 The information gathered at your initial assessment will determine an initial treatment plan. This will include discussion and agreement about how to keep yourself safe during your treatment. You will be asked to identify family members or close friends who can help and support you throughout your treatment and, if you are an adult, asked about what information can be shared with them. If you are under 18 years then your parents or legal guardian will be included automatically unless there is a specific reason why this should not happen. Close family members are entitled to have a carers needs assessment in their own right, even if they are not directly involved in your treatment plan. As well as mental health care you can expect to have some physical health checks as part of your treatment. This includes regularly measuring your weight and BMI to monitor if the treatment is working for you. You may also have regular blood tests and ECGs to monitor your heart. If you are having treatment for another health condition or you are pregnant clinicians from the different services will communicate with each other frequently and share information with each other to ensure your safety and health and to make sure you get the most benefit from any treatment. Planning Your Care Promoting Hope, Opportunity and Personal Control 13 Your treatment will be very specific to your particular circumstances. Based on the assessment you and your therapist will agree and then work on your treatment plan. This will be regularly reviewed with you and will change over time as your circumstances and health care needs change. The section below describes the range and types of services that can be beneficial for people with an eating disorder and their family members. This is sometimes called the “stepped care model”. Treatment Plan Targeted Prevention Service User Early intervention and supported self-help Specialist physical and mental health services Inpatient Treatment Eating disorder Support Groups Intensive eating disorder programmes Self-Care 14 Self-Care There is a range of voluntary and community services that can help you deal with stress or emotional difficulties, or to make lifestyle changes and learn new problem-solving or coping strategies. These are available to everyone. Family members in particular can benefit from this type of service. People with an eating disorder may be signposted to some of these types of services to support their recovery and prevent relapse. Targeted Prevention Programmes Education programmes preventing people from developing an eating disorder are delivered by some of the voluntary sector organisations working in the field of eating disorders. These are targeted mainly at groups where eating disorders are more prevalent (13 to 25 age groups) and are delivered through schools, youth clubs, further education colleges, sports groups and the like. These programmes encourage people to ask for help if they are worried about their eating. They can also give parents, teachers, youth workers and others information and more confidence to speak up if they are worried about someone. Stepped Care Model for Eating Disorders Stepped Care means getting the right treatment, at the right time, from a service that has the knowledge and skills that you need. Promoting Hope, Opportunity and Personal Control 15 Early Intervention and Supported Self-help Early intervention as soon as eating disorder thinking and behaviour start is the most effective treatment. There are specialised guided self-help and psycho-education programmes specially designed for people in the early stage of an eating disorder. These may be delivered as online programmes or through specialist voluntary or community based services. In some areas there are early intervention practitioners attached to eating disorder teams who also deliver these programmes. Some of these programmes may take place in a group setting, while others are delivered in one to one sessions. There are also programmes recommended for family and friends. Physical & Mental Health When an eating disorder is diagnosed and /or eating behaviours are starting to have an effect on your mental and physical health you will be offered specialist services as appropriate to your specific needs.

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