East London Eating Disorder Service (Adults)

Lived Experience Guide
This guide is a snapshot of how adults in East London have navigated experiences of uncertainty while seeking support for disordered eating. By sharing their stories, ‘experts by experience’ seek to challenge the ‘eating disorder stereotypes’ which can so often stop us from feeling we deserve help. We also reflect on the many different meanings of ‘recovery’ and the ways in which you can make this feel relevant and realistic to your own life.

BEAT
A national Eating Disorders Charity offers Online Resources, including courses and workshops for carers and family members of people with eating difficulties. They also offer a helpline where you can talk to someone about your experiences. Beat also runs a number of eating disorder online support groups, and you don’t have to have a formal diagnosis of an eating disorder to join.

MaleVoicED
Male voices with eating disorders is a charity that recognises and values the lived experience of males who have experienced or are experiencing, eating disorders, disordered eating, and associated co-morbid conditions.

FREED - First Episode Rapid Early Intervention for Eating Disorders (age 16-25)
The FREED website provides information on eating disorders, the importance of early intervention, and how to seek help. There are resources you can download and stories from young people who have recovered from an eating disorder.

When worries about your food, shape and weight get to the point where they affect your behaviour and everyday life, this can be indicative of an eating disorder.

Eating disorders can take many forms and so there are a number of indicators. These may include restricting food intake, bingeing, feeling a loss of control around eating, self-induced vomiting, laxative usage, compulsion to exercise, worries about body shape and weight, etc.

Whilst eating disorders can appear to be about food and weight, there are often other contributing factors that can lead to a person having an eating disorder, and these can differ greatly from person to person.

Often, eating disorders can give a sense of control when other areas of your life seem out of control. Other functions of eating disorders include distraction, sedation, comfort, soothing and nurturance, predictability, structure, identity, self-punishment and many others.

Types of eating disorders
The most common eating disorders are:

• Anorexia Nervosa – trying to control your weight by not eating enough food, exercising too much, or doing both
• Bulimia Nervosa – losing control over how much you eat and then taking drastic action to not put on weight
• Binge Eating Disorder (BED) – eating large portions of food until you feel uncomfortably full
• Other specified feeding or eating disorder (OSFED) – A person may have an OSFED if their symptoms do not exactly fit the expected symptoms for any specific eating disorders.
• Avoidant/restrictive food intake disorder (ARFID) – when someone avoids certain foods, limits how much they eat or does both. Beliefs about weight or body shape are not reasons why people develop ARFID.

If you are struggling with eating but don’t think you meet the criteria for any of the above eating disorders, please still complete a referral form if you need help. You deserve help and support regardless of the severity of your difficulties. Please click on the headings for more information about each disordered eating presentation.

Initial Appointment (Assessment)
The initial appointment is an opportunity for you to tell us what has led you to seek support for your eating difficulties and some background information about yourself. It usually lasts up to an hour.

In this meeting, we will discuss your expectations, hopes, fears, and any goals you might have. It is an opportunity for you to meet the service and for you and us to determine together whether another service may be better suited to meet your needs.

You will be able to ask questions about our professional experience and remit and our approach to therapy.

It is also an opportunity for us to assess whether we are able to work with your concerns or difficulties. If we decide to work together after our initial appointment, we will discuss your treatment plan with you and you will have the opportunity to ask any questions about your treatment.

Treatments
We offer NICE (National Institute for Health and Care Excellence) concordant treatments. Depending on which service you are referred to, there are a number of different treatment options that you may be offered.

1. Group-based interventions
   Some treatment will be delivered in a group setting, and this can be before starting treatment, an additional psychoeducational addition to treatment, or the main component of your treatment plan. Depending on the service you are under, the content of the groups will differ but it will all be related to your eating difficulties. The goal of treatment is to support you to address the thoughts, feelings and behaviours related to your eating difficulties, learn skills to manage symptoms and build a healthy relationship with food and eating. The groups will be based on principles from cognitive behavioural therapy and compassion-focused therapy. Working in a group setting, making connections and sharing experiences of your own can make you feel heard and seen and help you to realise that you are not alone in your struggles.
    
2. Psychological Therapy
   Cognitive behavioural therapy is a collaborative, time-limited, present-focused therapy which looks at problems through recording and mapping out the relationship between an individual’s thoughts, feelings, body symptoms and actions. We might explore how past experiences shape core beliefs, and how these influence how you experience yourself, others and the world. This information helps the individual and therapist, work together, to find what is keeping the problem going. Individual’s goals are set which link in with planned challenging of thoughts and changes in actions in and out of sessions to break the problem cycle. CBT models and protocols also guide evidence-based tasks; such as experiments around challenging unhelpful thoughts and beliefs, reducing body-checking behaviours, introducing regular eating patterns, breaking dietary rules, reintroducing avoided foods and psychoeducation topics related to the problem. In order for psychological treatment to be helpful, it is important to have regular sessions.

   Compassion focused therapy is a kind of talking therapy. It is particularly useful for people who experience high levels of shame and/or self-criticism. This might include people who find it difficult to trust others, or those who find it hard to show kindness towards themselves, or accept it from others. CFT draws on lots of different ideas and techniques to help you learn how to be more compassionate towards yourself, and to feel safe and capable in a world that can seem overwhelming. It involves learning new skills and trying out different strategies and practicing these in between each session.
    

3. Dietetics
   Our dietitian works alongside the psychologists to provide support with your eating and drinking. The dietitian will work with you on your understanding of food and nutrition; help you to develop a better relationship with food; while working collaboratively with you to establish a healthy eating pattern and habit.

   This dietetic approach will also include support with difficulties that may arise from medical complications associated with disordered eating, using evidence-based guidelines. Care is patient-centred and dietetic goals are agreed with you to help normalise eating.
    

4. Peer Support
   Our peer support workers have a personal experience of recovery or supporting a loved one through recovery. They can provide reassurance and emotional support while focusing on practical guidance and strategies to help you move forward, wherever you are in your journey.

If you live in or have a GP in Newham, Tower Hamlets or City and Hackney, you can either:

• Ask your GP or health professional to make a referral on your behalf using this form
• Complete a self-referral form

The referral form will ask you a few questions about your experience and someone from the team will get back to you to think about how we can help you.

If you are unsure which borough you live in please use the search found on this site - www.gov.uk/find-local-council.

1. What boroughs does this service cover?
   Newham, Tower Hamlets and City and Hackney.
2. Can I refer over the phone?
   Unfortunately, we are not able to take referrals over the phone at this time. Referrals can be made using the self-referral form above and this can be completed either by yourself or by a professional involved in your care.
    
3. Who is eligible for your service?
   You are eligible for our service if you are 18 years or over and if you live in Newham, Tower Hamlets and City & Hackney or your GP Practice is in one of the aforementioned boroughs. If in doubt please use the search bar under the referral tab to find your local council.
    
4. How long will treatment take?
   The length of sessions, number of sessions, and frequency of sessions will vary depending on the individual and service you are under. The first stages of individual therapy usually involve an assessment and creating a shared understanding between client and therapist of the client’s difficulties and maintaining factors. The treatment plan is then discussed and agreed upon.
    
5. What if something comes up and I can’t make the appointment?
   Research with regard to therapy attendance shows that people who attend regularly have a far higher chance of making greater improvements. In light of this, we ask you to commit to attending your booked sessions. It is, however, understandable that sometimes things may come up that means you have to miss a session. We ask that you let us know beforehand so that we can reschedule your appointment.
    
6. I am thinking of referring myself, but I'm not sure if my experience is 'bad/seriousness enough' to get help. What should I do?
   If you are struggling with eating but don’t think you meet the criteria for any of the above eating disorders, please still complete a referral form if you need help. You deserve help and support regardless of how severe you think your difficulties are.
    
7. I’m a relative, what can I do?
   We are unable to take referrals directly from relatives due to confidentiality. We also find therapy works best if the individual feels ready to seek help themselves. We suggest you direct your relative to this site so they can see what help is available. If you need support, BEAT offers a support group called Aviary, for anyone supporting someone else with an eating disorder.

Lived Experience Guide
This guide is a snapshot of how adults in East London have navigated experiences of uncertainty while seeking support for disordered eating. By sharing their stories, ‘experts by experience’ seek to challenge the ‘eating disorder stereotypes’ which can so often stop us from feeling we deserve help. We also reflect on the many different meanings of ‘recovery’ and the ways in which you can make this feel relevant and realistic to your own life.

BEAT
A national Eating Disorders Charity offers Online Resources, including courses and workshops for carers and family members of people with eating difficulties. They also offer a helpline where you can talk to someone about your experiences. Beat also runs a number of eating disorder online support groups, and you don’t have to have a formal diagnosis of an eating disorder to join.

MaleVoicED
Male voices with eating disorders is a charity that recognises and values the lived experience of males who have experienced or are experiencing, eating disorders, disordered eating, and associated co-morbid conditions.

FREED - First Episode Rapid Early Intervention for Eating Disorders (age 16-25)
The FREED website provides information on eating disorders, the importance of early intervention, and how to seek help. There are resources you can download and stories from young people who have recovered from an eating disorder.

Please note we are not an emergency or urgent care service, please contact your GP who will be able to assess your current needs.

If you are worried about acting on suicidal thoughts and cannot keep yourself safe please contact the following crisis numbers:

• Newham Home Treatment Team – 0800 073 0066 (24 hrs)
• Tower Hamlets Crisis Intervention – 0800 073 003 (24hrs)
• City & Hackney Crisis Service - 0800 073 0006 (24 hrs)

NHS 111, 'Option 2' in East London
You are also able to call NHS 111 and select 'Option 2' in East London. Calls to the local crisis lines currently in place at ELFT will be diverted to the centralised 111, option 2 service, meaning that no calls will be missed.

We encourage those known to services to continue contacting them in the ways they had been doing so previously during working hours. Those wishing to contact a mental health professional outside of hours – or those who aren’t previously known to services – should contact 111 and select option 2. Read more in our website news item.

Other ways to access support

• Call 01582 722225. Open to adults (18+) Tuesday-Friday 5pm-11pm. Use this to access phone support delivered by a trained mental health professional from Mind Crisis Cafes.
• Call 116 123 for free or emal jo@samaritans.org. Open to people of all ages 24/7. Use this to contact and talk to a Samaritans listening volunteer.

Are you an adult with experience of disordered eating or an eating disorder? Have you accessed mental health services in East London?

‘Professional expertise’ is only one part of what makes a good mental health service. In our People Participation group, ‘experts-by-experience’ work with us to help develop and improve eating disorder support. Our members take part in activities such as:

• attending focus groups and planning meetings to help inform best practice in disordered eating support
• co-delivering psychoeducation sessions for service users
• co-designing and co-delivering training on disordered eating to ELFT staff
• co-producing support resources and communications materials for the service
• participating in Eating Disorders Awareness Week campaigns
• sitting on interview panels to recruit new staff

As an expert-by-experience in disordered eating, you can be paid for your time via ELFT’s Reward and Recognition scheme.

Read more about People Participation

• Flyer - People Participation for Disordered Eating
• Information sheet – People Participation for Disordered Eating

If you're interested in finding out more, we'd love to hear from you - please fill out your details in our contact form. Our People Participation Lead will then get in touch to share further information with you.

At times, it can feel difficult to talk about the things that didn’t work for you directly with the clinicians that you have met. If this is the case for you, then you may wish to contact PALS. PALS offers confidential advice and support on health-related matters for our NHS trust.

They are your first point of contact to help improve the care you are provided through listening to your concerns and suggestions. This service can take forward any compliments you may wish to make, furthermore, they can provide advice on the NHS complaints procedure and how to get independent help if you wish to make a complaint via the use of an advocate.

This service is operating Monday – Friday (9am – 5pm, not including bank holidays) You will be able to contact them either by phone or email and these details are:

Telephone: 020 8510 7315
Email: huh-tr.pals.service@nhs.net

• Easy Read PALS leaflet
• Visit the East London PALS page