Eating disorder workshops for parents and carers

We are proud that a strong number of male carers attend our carer support groups and workshops. This has been helped by having male carers involved from the very beginning - first through my husband, Hugo, and more recently Chris, a single parent who supported his daughter through her recovery journey. Chris now co‑facilitates these sessions for dads and other male carers, including partners, brothers, grandfathers, friends, and professionals.

In November 2023, we delivered a workshop on the role of male carers at the Royal College of Psychiatrists Eating Disorder Faculty Conference in London. Several members of our group also continue to support and contribute to ongoing research in this area.

The group meets every few months for a catch‑up and this is an opportunity for male carers to share their experiences, learn from one another, and practice New Maudsley skill.

One of our members, Matthew, has also set up a WhatsApp group, offering a valuable way to stay connected and supported between Zoom sessions.

A question that often comes up in the workshops is “What does a meal plan look like and how can we get our loved one to stick with it?”

Many carers will find that they need to provide their loved one (Edi) with a great deal of support at meal times in the refeeding stage, especially if there are no signs that Edi can ensure his or her nutritional safety. This is an exceptionally difficult task and hopefully carers will have been given some guidance and support from their loved one’s specialist eating disorder care team. Sadly, this is often not the case. Carers are simply instructed “you know how to feed your child” and left to try to come up with a plan. Mealtimes end up being fraught with difficulty and high emotions which are not conducive to Edi successfully finishing a planned meal. Sometimes it can be helpful if parents are given specific guidance regarding meal plans rather than - aim for 2000kcal this week, 2500kcal next week and so on. Care teams sometimes provide this level of detail, many don’t. Families find different ways of creating appropriate meal plans.

Of course, each individual has differing needs and so the amount of food required to stabilise/ gain weight is established through trial and error. If your loved one is not gaining weight as expected, and you are sure that there are no compensatory behaviours (purging, laxatives, over exercise, hiding food) then this is a sign that the daily amount needs to be increased. My son needed 4000 - 4500 kcals a day once he was back in school and active (fit sporty boy with high metabolism). Many other families with active teens have reported that their loved ones have required this level of intake to restore health. The key is to build up to the required levels gradually. Meal planning and meal support is also an essential part of recovery from bulimia nervosa and binge eating disorder and we will consider this as well.

The resources available after this workshop will include some examples of meal plans from Great Ormond Street, the New Maudsley Approach and individual examples that carers have found have worked for their loved one.

It is terrifying to discover that as well as having an eating disorder, your loved one is self harming. Self harm is much more common than it used to be as young people have discovered it is an effective and immediate way of coping with overwhelming emotions. It can be a young person who has no diagnosable mental health condition, it might be due to a short term teen emotional crisis, or it might exist alongside diagnosable mental health conditions such as eating disorders. I have done a lot of work in schools around self harm. It is true that not all young people are self harming, but they all know somebody who is, and they are keen to learn how to help and support each other.

Self harm can appear at any stage of treatment or recovery. Very often it is at transition stages due to the distress of the eating disorder voice fighting back. This might be at diagnosis, shortly after admission to in patient care, or in the later stages of recovery. Whenever it appears there is no doubt that it is very distressing for all family members to witness.

This session is being offered to carers of loved ones with an eating disorder so that we can consider three very common questions

• Why has my loved one with an eating disorder suddenly started self harming?
• How should we best respond to self harming behaviours?
• How can I manage my own distress when my loved one is self harming?

In recent years there has been much written about possible links between autism and eating disorders. Many eating disorder clinics now routinely screen new patients for autism and will then adapt treatment according to the patient’s individual needs. There is no one recommended approach, although the PEACE pathway created at the Maudsley hospital in London is being adopted by many services. The PEACE pathway specifically considers how treatment can most effectively be adapted for patients with a dual diagnosis of autism and anorexia.

Of course, people with autism spectrum conditions (ASC) can present with a wide array of eating difficulties, not just restrictive eating. The main eating disorder categories can exist within the ASC population including anorexia, ARFID, bulimia, and binge eating disorder. Individuals might overeat certain foods because of the comfort it gives them or they might never experience feelings of fullness. At the other end of the scales certain tastes, textures and colours might be avoided as they trigger sensory overload for example.

Three sessions are now being offered on a rolling basis to carers of loved ones with an eating disorder and an ASC or high level autistic traits:

Session 1: Autism & ED skills illustration of New Maudsley skills session.

Illustration of New Maudsley techniques in the context of co-existing autism. This is a listen and learn session around what the research tells us and how New Maudsley skills can be adapted and used to support a loved one with autism.

Session 2: Skills practice session on autism affirming communication styles.

Practical skills exploring communication techniques when there is autism present. This is more of an interactive session looking at the scenarios and challenges that participants are facing.

Session 3: Skills practice session on autism friendly techniques for planning for change.

Practical skills exploring ways to help your loved one plan for change and start to make small changes as they build confidence.

Within these sessions we can consider three very common questions: 

• What useful information can I provide the eating disorder team about my loved one?
• How can I tell if a behaviour is emanating from the ASC or the eating disorder?
• How should treatment be adapted for my loved one with autism?

Supporting an adult comes with so many challenges and these are some of the FAQs that come up time and again:

• How do other carers manage their "I don't want to be an anorexia sponsor today" and cope with the compassion fatigue that can build up when your loved one has been ill for a long time.
• Coping with weight loss/ lack of weight gain
• Having conversations about suspected ED behaviours re emerging without infantilising the person with the ED
• Repairing ruptured relationships when emotions for both parties have spiked (again and again and again)

There is no doubt that young adults and adults with eating disorders have it hard. Whereas there is effective, validated treatment for children and teenagers, for adult sufferers, things are less clear, and availability of treatment can be sparse. Most adult treatments require the patient to engage with therapy, yet sufferers may be far too underweight and/or malnourished, their eating disorder behaviours have become habitual, or they are simply not motivated to be able to engage in therapy or other support. Parents, partners and other close others are desperate to support their adult sufferers and yet feel they are being pushed back both by the system and their loved one’s eating disorder voice. Parents are mindful that they no longer have the same legal right to get their adult child treatment – unless their child is at serious levels of physical medical risk or suicidal ideation.

The aim of this stand alone workshop is to bring supporters of adult sufferers together, to share ideas as well as to consider specific New Maudsley techniques that can be helpful. Meeting others facing similar challenges can be so energising and help you to know - you are not alone!

In this seminar we review how best to support your loved one when he/she is in the maintenance stage of recovery from an eating disorder. Recognising the challenges and contingency planning for potentially difficult events can be invaluable. Sufferers in recovery often report that once they looked better everyone around them assumed that life was now easy and the level of support fell by the wayside. Lapses and relapses are an important part of the recovery process, but without continued support they can easily trigger a full blown decline back into the illness. At the other end of the scale sufferers also report it was such a relief when their carers could start to take a step back, give the sufferer more autonomy and believe that their loved one could take responsibility for their own health.

This session is being offered to carers of loved ones recovering from an eating disorder so that we can consider four very common questions:

• How do I know if it is my healthy loved one moving forward and taking risks, or the ED voice trying to trip her up? 
• What is a reasonable level of risk and how can we have conversations with our loved one about this?
• What is the difference between a lapse and a relapse?
• Will I ever be able to truly relax and take a step back from my caring role?

• Tuesday 1 September, 6pm - 8.30pm

To book a place on one of our topical seminars, please email training@charliewaller.org.

• Wednesday 2 September, 9.30am-12pm

To book a place on one of our topical seminars, please email training@charliewaller.org.

• Wednesday 7 October, 9.30am – 12pm

To book a place on one of our topical seminars, please email training@charliewaller.org.

• Thursday 9 July, 6pm - 8.30pm
• Wednesday 7 October, 6pm - 8.30pm

To book a place on one of our topical seminars, please email training@charliewaller.org.

• Friday 7 August, 9.30am – 12pm
• Friday 13 November, 9.30am – 12pm

To book a place on one of our topical seminars, please email training@charliewaller.org.

Programme 1:

• Session 1: Autism and ED skills illustration of New Maudsley skills session - Wednesday 3 June, 10am - 12.30pm
• Session 2: Skills practice session on autism affirming communication styles - Wednesday 1 July, 10am - 12.30pm
• Session 3: Skills practice session on autism friendly techniques for planning for change - Wednesday 5 August, 10am - 12.30pm

Programme 2:

• Session 1: Autism and ED skills illustration of New Maudsley skills session - Thursday 8 October, 6pm - 8.30pm
• Session 2: Skills practice session on autism affirming communication styles - Thursday 12 November, 6pm - 8.30pm
• Session 3: Skills practice session on autism friendly techniques for planning for change - Thursday 10 December, 6pm - 8.30pm

To book a place on one of our autism and eating disorder rolling programmes, please email training@charliewaller.org.