Information for carersFor the service user:While recovery from an eating disorder is achievable, it can be a long and difficult journey. It can often be beneficial to have someone to support you along the way. As a service, we believe that families and friends are helpful resources in treatment. They can assist by attending some of your therapy sessions and working alongside you, by helping you with tasks of treatment, by giving you their opinion or advice or just by being someone to listen and “sound things out” with you.

There is almost always someone who could assist you in your journey. Even if you have not yet told them about your eating difficulties, they may be surprisingly understanding and non-judgmental. It is worth considering if there is anyone who could support you with your recovery. This may be a parent, a sibling, a partner, a part of your extended family, a friend, a family friend, etc.

Even if you do not want any of your family members or friends involved, they could benefit from knowing a bit about eating disorders and the services out there to support them, as people who care about you and want the best for you. This could help them to better understand the struggles that you experience and to be more patient with you during difficult times.

There may be times when your eating disorder or your emotions feel overwhelming. It is at these times of risk when you will need support, guidance and care from thepeople you most trust around you.

We would encourage you to pass this information sheet over to them so that they may start to understand a bit about our service and to point them towards some helpful resources.

Information for family members and friendsIf you have been given a copy of this leaflet, it is obvious that your family member or friend, who is suffering from an eating disorder, feels that you may be a helpful person to support them and may benefit from information about their difficulties and how to help. As a service, we see family members and friends as important resources in treatment. We would like to share information about our service with you and point you in the right direction to learn more about eating disorders (who they effect, the causes, treatment) and the resources that can provide you with information and support. Supporting someone with an eating disorder can be challenging and anxiety-provoking and we hope that this information will be a helpful resource.

About the ServiceVincent Square Clinic is located on the Chelsea and Westminster Hospital site in central London and offers a comprehensive range of specialist services for women and men aged 16 years and over suffering from anorexia nervosa, bulimia nervosa and other eating disorders. There is also a satellite clinic at Northwick Park Mental Health Unit in Harrow for patients local to Brent and Harrow.

Our teamWe are a multidisciplinary team (MDT), which includes doctors, nurses, psychologists, family therapist, art therapists, physiotherapist, dietitian, and occupational therapists.

Once the assessment has taken place, patients may start treatment quite soon afterwards (particularly if they need to have inpatient or day patient care) or they may be placed on a waiting list. Unfortunately, due to the demand and wide catchment area we cover, the waiting time may be several months. While on the waiting lists, we advise GPs to keep a close eye on your family member/friend and to let us know if there is any significant deterioration. If you are worried that there is deterioration, please encourage your family member or friend to see his or her GP for a review, or contact the professional who initially assessed them at the clinic.

The inpatient and day patient services involve a combination of nutritional and medical management and psychological therapies both individual, in groups and family therapy. More detailed information is available from our website.

Vincent Square Eating Disorder Service believes that families and carers play a vital role in the recovery from an eating disorder. Consequently, we are fully committed to providing a range of services designed to support both families and carers and, where ever possible, to involve them in the treatment of their loved one. This is a reflection of our service’s philosophical belief and follows the recommendations from the National Institute for Health and Clinical Excellence (NICE).

This information sheet gives a brief overview of the services available at Vincent Square Eating Disorder Service. More detailed information, along with downloadable information sheets, can be found on our website:www.cnwl.nhs.uk/vincent-square

About eating disordersEating disorders such as Anorexia Nervosa, Bulimia Nervosa and Binge Eating Disorder, are mental health problems. They involve an unhealthy relationship with food (such as restricting one’s food intake, bingeing on large amounts of food, sticking to strict dietary rules). They also typically involve a poor or distorted body image and/or a fear of gaining weight.

People with Anorexia Nervosa are always severely underweight. There is no one cause for eating disorders and no one type of person gets them. It is rather a combination of things (some of which may be: a genetic predisposition, a personality

style, traumatic events and bullying) that contribute to the development of an eating disorder. Eating disorders primarily effect women, however, 10 per cent of sufferers are men.

Why involve family and friendsAs a service, we believe that families and friends are a helpful resource in the treatment and recovery of an eating disorder. We also understand that helping and caring for a loved one who is suffering from an eating disorder is not an easy task. We believe that by knowing more about the individual, their family, and the context in which they live their lives the better we are able to help them.

The reason for meeting family members is not because they are seen as the source of the problem but because they are needed to help their loved one to recover. The family is a resource; an ally in the battle to defeat the eating disorder. It is not an opportunity to apportion blame or responsibility. Emphasis is placed on change and how things can be done differently in order that a ‘healthier’ and more ‘normal’ relationship with food can be established.

We also believe that caring for someone with an eating disorder has a huge impact on the family and carers themselves. We believe that it is important that carers are helped and supported in this difficult and sometimes over-whelming task.

We are convinced that supporting families, friends and carers facilitates a fuller and more enduring recovery.

Lastly, the National Institute for Clinical Excellence (NICE, a government body that reviews research evidence and consults experts in the field) make the following recommendations:

1. It is good practice for families of patients of all ages to be involved in the assessment and treatment of patients suffering with an Eating Disorder, and to be kept informed about risks and progress.

2. For young people with Anorexia Nervosa, family interventions are the treatment of choice.

Resources for carers

A Carers Support Group and skills based workshops are available to the families and carers of all current inpatient, day-patient and outpatients and carers of those currently on our waiting list.

Skills-based workshops for carersThe skills-based workshops are for parents, partners or carers of those suffering from an eating disorder. The purpose of the workshop is to improve, develop and learn new skills in responding to the often difficult and challenging behaviors associated with sufferers of an eating disorder.

We have developed a seven module teaching programme where attendees will learn new skills such as:

Dealing with challenging behavior Communication skills and the importance of listening Avoiding traps that may maintain the disorder Feeding and supporting recovery

Motivational interviewing Boundary setting How to look after your own well-being

The workshops take place in the spring and winter of each year and are facilitated by members of the MDT. They take place on a Monday evening from 6pm until 8pm.

Carers Support GroupThese fortnightly groups are designed to support carers in the demanding and emotionally overwhelming task of caring for their loved one. The group’s aim is to support you in helping your loved one. It aims to provide a safe environment for you to talk about the impact that the eating disorder has had on you and your family. Looking after your own well-being is a significant part of the group’s focus. It occurs on the ward from 6.30pm until 8pm on Monday evenings.

In order to access or to enquire further about any of the carer services listed please speak with a member of staff at any time or email vincentsquareeds@nhs.net

Further Resources

Suggested reading materials Skills-based learning for caring for a loved one with an eating disorder: The new

Maudsley methodBy Janet Treasure, Grainne Smith, and Anna CraneThe Succeed Foundation has developed a DVD based on the above book which has been written, produced, and directed by carers, patients, and clinicians http://www.succeedfoundation.org/

Anorexia Nervosa; A Recovery Guide For Families, Friends and SufferersBy Janet Treasure

Eating Disorders a Parents’ Guide, from Great Ormond Street Hospital Eating Disorders ClinicBy Rachel Bryant-Waugh and Bryan Lask

Eating with your Anorexic – How my child recovered through family-based treatment and yours can tooBy Laura Collins

Anorexia and Bulimia in the FamilyBy Grainne Smith

Biting the Hand that Starves You: Inspiring resistance to anorexia/bulimiaBy Richard Maisel, David Epston and Alisa Borden

National Institute for Health and Clinical Excellence (NICE): Eating disorders treatment guidelines for England and Wales. Available online at www.NICE.org.uk

Online resources

B-eat

Beat is the world’s largest eating disorders charity. It provides support and information to anyone affected by eating disorders, including sufferers, their family members and friends, professionals and anyone who wants to find out more about eating disorders.Website: www.b-eat.co.uk

Helplines: Beat Adult Helpline (over 18s) 0845 634 1414 (Monday to Friday, 10.30am-8.30pm; Saturday, 1.00pm-4.30pm)or email help@b-eat.co.uk

Beat Youthline (for those aged 25 or under) 0845 634 7650 (Monday to Friday, 4.30pm-8.30pm; Saturday, 1.00pm-4.30pm)or email fyp@b-eat.co.uk

Beat offers a callback service, so that you can save the cost of the call. The Youthline also offers a text service - text 'call back' to 07786 201820 for a free callback. They aim to return calls within 24 hours and during Youthline opening hours.

Beat Carers' ForumThe Beat Carers' Forum is an online community dedicated to carers, where you can find information and access support, talking to other people who have supported someone with an eating disorder. By registering on the forum you can access the dedicated message boards, participate in live chats with other carers and download a range of information to help you provide the best possible support. Website: www.b-eat-carers.co.uk

Eating disorders and carersThe London Carers Group is a self-help group run by and for carers of people with eating disorders or those living with someone who they think might have an eating disorder. Website: http://eatingdisordersandcarers.co.uk/london-carers-group/

The New Maudsley ApproachThis website provides parents and carers of people with eating disorders with a toolkit to help educate, empower and equip them to deal more effectively with the stressful caring role. Website: http://www.thenewmaudsleyapproach.co.uk

Overcoming Anorexia for Carers www.overcominganorexiaonline.com

Carers TrustCarers Trust works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.Website: http://www.carers.org/Of particular note the ‘Triangle of Care’ Guide may be of interest to carers.

Should you require further information about eating disorders or would like information about services available please ask to speak a member of staff or email vincentsquareeds@nhs.net

ConfidentialityFamily members and supportive friends often feel that they do not have enough information or involvement with their loved one’s care. They often feel that issues of patient confidentiality can get in the way of helpful information sharing. Loved ones can feel intruded upon by information being given to their families. We believe there are two types of information that we can share: The first being general information about eating disorders, treatment approaches, and information about further resources available; the second being specific information about the individual’s difficulties and treatment. As a service we think it is important to share general information about eating disorders and their treatment with families. We will not however share any personal information with the express permission of one’s loved one to do so.

Non-attendanceAs a service we understand the anxiety a loved one’s non-attendance can cause. Your loved one has a right to choose whether or not they attend appointments. As a carer you can best support them by acknowledging that they have this choice, and having a calm discussion about the consequences of the choice they have made or conversely a conversation about the benefits of attending and receiving treatment.

Comments, Complaints, ComplimentsWe welcome your views on our service.

Please contact the Patient Advice and Liaison Service (PALS) for confidential advice and information about CNWL services:

• Phone: 020 3214 5773• Email: pals.cnwl@nhs.net

This document is also available in other languages, large print, Braille, and audio format upon request. Please email communications.cnwl@nhs.net

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Central and North West London NHS Foundation Trust

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www.cnwl.nhs.uk