More support to help parents help their son or daughter beat an eating disorder
- More support to help parents help their son or daughter beat an eating disorder
- Fast learning and support if you’re overwhelmed
- More sources of information when you have a little more time
- More sources of information for when you have quite a bit more time
- Podcasts: hear experts talk while you walk!
- Find support from other parents
- Lots of books
- To keep up with research papers
- Websites for information or support
First, there’s my book – I’ve structured it so that you dip in and out of it and get quick answers, then go into more depth later. Check out my videos too.
Here are some other sources of information and support that I particularly like.
Fast learning and support if you’re overwhelmed
Get a great, positive, fast overview with this short video produced by Dion Howard of a New Zealand family’s experience with the illness and with recovery.
Next, grab yourself half an hour, as this next video accurately tells parents what they need to know right from the start.
Visit the Around the Dinner Table forum. There you will find parents from all around the world, some of whom are new to anorexia, and some of whom have amassed impressive knowledge and experience over the years. You’ll get answers to your questions, and people ready to give you support and understanding at any time of the day, sometimes several times a day. Note that you can read several years’ worth of posts without the need to join.
Read whatever you need right now in Around the Dinner Table’s Hall of Fame posts.
More sources of information when you have a little more time
James Lock and Daniel Le Grange
Family therapy for eating disorders should be the first treatment offered to children and adolescents, because that is what the research shows is most likely to work, and to work fastest. Lock and Le Grange’s book for parents (‘Help your teenager beat an eating disorder‘) and their manual for therapists (‘Treatment manual for anorexia nervosa – a family-based approach‘) describe the best-researched form of family-therapy for eating disorders: family-based treatment (FBT), also popularly named ‘The Maudlsey Approach’. Both books are highly readable and are must-reads. (My own book loosely follows principles of FBT and goes more into the how-tos from a parent’s point of view.)
Finally, I would urge all clinicians to get hold of this ‘New applications‘ book edited by Loeb, Le Grange, Lock book below, in order to update themselves with developments and applications of family therapy for eating disorders.
Survive FBT by Maria Ganci
This short book, written by a certified FBT therapist, gives parents an overview of what anorexia is, what Family-Based Treatment is, and the main things parents will need to do. It gives an overview and guidance on skills parents need. This will give you the gist of FBT in just a couple of hours.
More sources of information for when you have quite a bit more time
Decoding Anorexia by Carrie Arnold
You can get a taster of her myth-busting, clear-headed writing on her blog, Edbites.com
Evidence-based CBT for eating disorders
If your child is offered cognitive behavioural therapy (CBT) then I recommend you read this manual by Glenn Waller, which is designed for therapists but will show you what to expect. If you’re getting something very different it may be because you’re not getting a form of CBT that is adapted and researched for eating disorders. More on this here. Also, Christopher Fairburn’ manual for therapists contains the protocol for one of these adaptations: enhanced cognitive behaviour therapy for eating disorders (CBT-E). Both manuals are highly readable. Both authors have written self-help versions (which I haven’t read properly). Self-help is not appropriate for children and teens. Self-help may be appropriate in the first instance for adults with bulimia or binge-eating disorder, but not for anorexia. Note that in the UK’s health system, self-help may be an option for adults but it’s done through mental health services, not alone.
Both authors have written self-help versions (which I haven’t read properly). Self-help is not appropriate for children and teens. Self-help may be suitable in the first instance for adults with bulimia or binge-eating disorder, but not for anorexia. Note that in the UK’s health system, even when self-help is the chosen option for an adult, it’s done through mental health services, not alone.
The Kartini clinic and Dr Julie O’Toole
This book is high on many parents’ list of recommendations, and the Kartini clinic has a great reputation. I love the clarity and passion with which Julie O’Toole, the founder of the clinic, writes, both in this book and in her blog . There is an excellent section on the causes of eating disorders, the effects of food restriction (as revealed in the Minnesota semi-starvation study), and the sorry history of treatment approaches, including how parents came to be blamed and excluded from their children’s treatment.
Julie O’Toole is a fierce advocate of the role of parents. She describes how the Kartini clinic works, with its hospital, day unit, and outpatient unit, how parents are involved, and how flexible meal-plans (which are included in the book) are devised. She explains her (to many parents, controversial) reasons for not including fast foods or sweets for an entire year. There are excellent sections introducing the lay reader to the anatomy and physiology of the brain, and explaining the role of psychotropic medication. There are also explanations about target weight gain, ideal body weight and how it is determined.
This book will not give you any advice on how to get your child to eat at home. You might also want to skip some of the details about how the Kartini clinic works. But all in all, this is an important, instructive and highly readable book for parents, which I highly recommend.
Brave Girl Eating by Harriet Brown
Harriet Brown is a journalist whose daughter spiralled into anorexia at age 14. It’s a flowing and gripping read, practical as well as moving. This family cared for their daughter at home and helped her to eat after rejecting options to hospitalise.
What you’ll find in this book:
- it’s a source of support, as you’ll recognise similar stresses and challenges in your family. For this reason this is also a good book to ask your own parents and relatives to read, so that they understand what you’re all going through.
- it’s moving, but at the same time, it doesn’t dwell on despair. So unless you’re feeling particularly vulnerable right now, you should find that reading it doesn’t turn you into mush, but helps you move forward.
- it gives you an insight into what’s going in the child’s mind, when they wish to eat but need their parent to make the decision for them.
- the author did considerable research and gives you just enough science to help you understand the nature, effects, and possible causes of the illness. Get a copy for each friend who needs to understand this illness in order to understand you and your child.
The only thing that’s not 100% spot on with this book is … the cover of my edition. That elegant young woman languidly musing over a little dish of scones has nothing to do with the violent, devastating and passionate world of anorexia. And knowing the world of publishing, I bet it has nothing to do with the author’s view of the topic either.
Laura Collins Lyster-Mensh
Thousands of parents, myself included, owe a debt of gratitude to Laura Collins for all her campaigning work, beginning with her book ‘Eating with your Anorexic’, which she wrote at a time when most clinicians found the notion of involving parents extremely off-putting.
Her daughter developed anorexia at a time when parents were told to back off and let the experts take over, but her research led her to FBT (Family Based Treatment), (which she refers to as ‘The Maudsley method’), a method described in Lock and Le Grange’s book ‘Help Your Teenager Beat an Eating Disorder’.
Laura Collins did not have access to an FBT therapist, but went ahead as best she could. She writes a gripping and moving account of how she and her husband took control of their daughter’s recovery. I could identify with all her struggles, tears and determination – if you feel alone, read this and you’ll discover a kindred spirit.
Laura Collins Lyster-Mensh, in addition to writing her ground-breaking book, has devoted herself to improving public understanding, treatment, and support for families in the eating disorder world. She writes that her hopeful plea is for better science and an end to blaming families and blaming patients for a treatable brain disease.
She has created several fantastic resources:
- the F.E.A.S.T website: a source of information for parents, clinicians, and the community. Particularly precious is the section The Facts : here you can read about causes, interventions, your role, and find links to research. F.E.A.S.T is supported by a number of specialists, researchers, and an army of knowledgeable parents, so I trust that the information in there is top-notch.
- an online forum for parents called ‘Around the Dinner Table’ , which I highly recommend. It includes a wealth of good information for parents in the Hall of Fame section.
Laura Collins Lyster-Mensh’s blog, Laura’s Soap Box, is also a way of keeping up to date with the world of eating disorders.
She has an excellent regular podcast on eating disorders, called “New Plates“.
And she now has a business, Circum Mensam, which provides consultancy to healthcare companies and parent.
Beverley Mattocks: ‘Please eat…’
‘Please eat… A mother’s struggle to free her teenage son from anorexia‘ is an honest and insightful account of how Bev Mattocks supported her son Ben as he journeyed through the hell of anorexia and out into the light. Her story is typical of many parents’ experience with the illness. She hunted high and low for information and support, she battled the shamefully inadequate health system, she attended to her son’s schooling and social life, dealt with enormous tensions at home, and made some heart-warming friends along the way. This is also very much Ben’s story: from the opening scene where we find him in hospital hooked up to a heart monitor, we’re rooting for him to come out winning and we celebrate every step towards his recovery.
If you’re a health professional, read it to understand what parents are struggling with at home. You will learn things that parents might not dare tell you in your consulting room. If your friends or relatives think that anorexia is simply a refusal to eat, get them to read Ben’s story. And if you believe anorexia is a girl thing, this book will sweep away your misconceptions.
Bev Mattocks has also produced ‘When anorexia came to visit: Families talk about how an eating disorder invaded their lives‘, a book that collects the stories of several families. Reading it may help you find comfort in recognising that you’re not alone in what you’re experiencing.
The ‘New Maudsley Approach’
Although the name might make you think it’s an updated version of Family-Based Treatment/Maudsley, that’s not the case. This comes from the adult eating disorders services of the Maudsley hospital in London, headed by Janet Treasure. It offers carers skills to support their loved one through whichever treatment they’re following, and it’s not a treatment in itself. Many of the skills can be useful to parents of children and adolescents, since they’re about warmth and empathy. There are differences though. For teenagers the recommended treatment, FBT/Maudsley, requires parents to take charge and push for rapid gains, because rapid weight gain is linked to better recovery. The New Maudsley Approach was developed for adults who have been ill a very long time and where therapists don’t believe they can push for rapid weight gain. It therefore teaches parents to be gentle dolphin-like guides, nudging towards motivation and gradual change. (Note: I haven’t read the more recent 2016 edition)
Substance abuse, addictions, and eating disorders
A lot of people with eating disorders also engage in drug or alcohol abuse, and conversely a lot of people abusing substances also have an eating disorder. If your son or daughter is in this situation or if as a clinician you want to improve your ability to treat comorbid conditions, a good place to start is to listen to this podcast with Dr Timothy Brewerton. I have not read his book nor do I have any great knowledge of this area, so at this stage I’m signalling, not recommending.
Podcasts: hear experts talk while you walk!
Welcome to the new world of podcasts. Hear all kinds of eating-disorder related topics discussed by people who know their stuff. And you don’t have to sit at your computer to listen, you can download podcasts to your phone to listen while you’re out and about (with my Android I use an app called “Podcast Addict”
Tabitha Farrar’s “Eating disorder recovery” podcast
I love her genuine and warm tone, and she knows her stuff, covers crucial topics and has great guests (including me, giving tips for mealtime support). Topics include eating disorders in adults and in youngsters. Her website is also full of resources, especially for adult sufferers. Tabitha is, like me, part of the Mirror Mirror writing/editing team.
Laura Collins Lyster-Mensh’s “New Plates” podcast
Another top-notch podcast is “New Plates“, from Laura whose praises I sang above.
Gürze-Salucore Resource Catalogue’s “ED Matters” podcast
Gürze-Salucore has articles on eating disorders, it review books (including mine and publishes a catalogue of US care providers. You should not assume that everything there is up to date or top quality- for instance there are books in there about eating disorders coming from the relationship with fathers! However there’s lots of great stuff too. I regularly listen to the company’s podcast, ED Matters. I have heard fantastic stuff as well as the odd thing that made me flinch.
Find support from other parents
Around the Dinner Table forum
I am so impressed with the Around the Dinner Table forum, which is part of the parent organisation FEAST. I didn’t spend any time on it when I was in the thick of our crisis, because I assumed that like any forum, it would have lots of misinformed opinions mixed in with the odd correct thing. I couldn’t have been more wrong. Now I’ve had time on it I see that this forum is extremely well moderated. The standard of information or advice given out seems excellent, reflecting Laura Collins’ push for anorexia treatments to be evidence-based. Members get much support, kindness and encouragement. There is a commitment to sharing information that is science-based, and where science has no answers, there is a wealth of personal experience to draw from (most of it so consistent that it is very helpful). You’ll find help on feeding your anorexic child at home, or dealing with hospitals, or with clinicians who don’t know enough about the illness. If I had used this forum when I first came across it, I believe I’d have saved my child many months of hospitalisation.
Thank you moderators and mentors on the forum.
Having said all that, I also want to caution you: some parents want to use the site to glean information, but find themselves distressed by other people’s stories. And some parents have felt hurt or pushed around by responses that lacked the necessary level of empathy.
The forum is international, but notice this section as it may help you immediately to get local information: ‘Connect with local members wherever you are in the world’. Note also all the information for parents in the Hall of Fame section.
You have to join to post anything, but I believe anyone can read what’s on the forum.
Facebook groups I know personally
FEAST’s Around The Dinner Table forum has an excellent Facebook group. It is closed, which means you cannot read posts unless you’ve joined. The fact that you’re a member of the group will be visible to other Facebook users, so if you want total privacy, create a new Facebook account just for this. The group does roughly the same as the Around The Dinner Table Forum, so it may be a question of which format suits you best.
A similar group that is full of supportive parents from all over the world is the Eating Disorder Parent Support (EDPS) Facebook group.
There’s also Facebook group EDParent2Pro where parents can pose questions to professionals.
The International Eating Disorder Action (IEDAction) Facebook group is a world-wide bunch of hard-working parents, carers, survivors, sufferers and others, campaigning for better education and treatment. They’ve also created a World Eating Disorders Action day (in June). There is also an IEDAction website.
Outstanding videos for carers
First, take note I have produced some video and audio resources for you. Check out, for instance the very popular short ‘bungee-jumping’ video.
There are some informative and ‘how-to’ videos by C&M Productions, created by Charlotte Bevan, and ‘Mamame’ who were two moderator/mentor members of the Around The Dinner Table forum. I believe Janet Treasure was part of the team. The all-important body language and setting is missing, because these are simple animations, but it’s really worth listening to what’s said.
See a complete list of C&M videos here .
For instance, ‘ Modelling support ’ shows a girl putting up many arguments against eating her lunch. ‘ Modelling effective parenting for eating disorders ’ is also about lunch, but here the dad deflects a huge amount of abuse from his daughter (though the abuse looks quite tame, without the body language!) In both cases you can see how the parent keeps on topic, remains non-judgemental, loving, and ultimately, supports their child to begin eating. Similar is ‘ Rolling with resistance ’ has a young man insists on salad instead of the food on his meal plan. The woman supporting him seems to be a hospital carer.
The Maudsley Parents website has a fantastic collection of videos, featuring some of best experts in the field. Watch, and in an hour or two you will learn what might have taken you a year of learning the hard way: http://maudsleyparents.org/videos.html
Maudsley Parents website
MaudsleyParents.org is a volunteer organization of parents who have helped their children recover from anorexia and bulimia through the use of Family Based Treatment (FBT) as manualised by Lock and Le Grange . It also has on board some of the best clinicians or researchers. FBT is also called the Maudsley approach (which is not the same as the approach described in ‘Skills-based learning for caring for a loved one with an eating disorder – the new Maudsley method’ by Janet Treasure, Gráinne Smith and Anna Crane.)
This site is about families helping their kids with eating disorders. There’s a great ‘ask an expert’ section, and a helpful of page of book reviews on books about eating disorders. And again, there’s a fantastic collection of videos, featuring some of best experts in the field.
Mirror Mirror website
A constantly growing website on eating disorders is Mirror Mirror. It’s full of useful information pages written by top people in the field. That was my opinion before I was asked to join the editorial team in 2016, so I am glad to be part of it now.
- Lauren Muhlheim, Eating Disorder Therapy in Los Angeles: http://eatingdisordertherapyla.com/ Laura is a clinical psychologist, trained in Family-Based Treatment. She is writes for and oversees the content in the excellent Mirror Mirror site (which I am now involved in too) and in the eating disorder pages of verywell.com (which used to be about.com): https://www.verywell.com/eating-disorders-4014731
- Dr Julie O’Toole: http://www.kartiniclinic.com/blog/ There is a lot of medical expertise as well as a wonderful compassion in this clear and informative blog. You will learn tons from the archives.
- Dr Sarah Ravin: http://www.blog.drsarahravin.com/ She is an FBT-trained psychologist, with a commitment to scientifically sound information and evidence-based treatment. Every single one of her posts is written with great care and empathy, and I love her clarity. It’s really worth checking out the archives.
- Laura Collins: http://www.laurassoapbox.net/ Following this blog is a great way for a parent to keep up to date with everything eating-disorders related. Laura has knowledge, passion and a dedication to get opposing parties to communicate with each other.
- ED Bites: http://edbites.com is one of those rare things: a self-aware, scientifically engaged, non-triggering blog by someone battling anorexia. Carrie Arnold follows the scientific developments around eating disorders, and also shares her personal experience.
- Science of Eating disorders by Tetyana: http://www.scienceofeds.org/. Making sense of the latest findings in eating disorders research.
- Let’s Feast: the FEAST blog on http://letsfeast.feast-ed.org
- FEAST’s Bulletin Board (for announcements on research, conferences etc) is on http://members.feast-ed.org/news
Lots of books
Others have compiled much more comprehensive book lists than I intend to. I’m assuming you’re already pretty overloaded right now, so I’ve decided to give you only a small list of my absolute favourites.
For some great lists, get started here:
To keep up with research papers
If you’d like to keep up to date with research, the main sources are www.pubmed.gov, and also PubMed Central® (PMC), and www.plosone.org, which make their papers available to the public for free. Note that some of the blogs listed above tend to comment on the major new pieces of research.
Websites for information or support
Note that I don’t personally know all of these.
B-EAT : www.b-eat.co.uk This is the obvious one to start with, though I don’t know any parents who have directly got support from BEAT, apart from a few attending a BEAT-led parents’ support group. I suspect BEAT would help you create a local group if you wanted to. BEAT seems to be mostly orientated towards supporting those suffering from an eating disorder, and also towards raising awareness in the media. ‘Beat provides helplines, online support and a network of UK-wide self-help groups to help adults and young people in the UK beat their eating disorders.’
The Royal College of Psychiatrists : www.rcpsych.ac.uk
See the information I’ve collected for Scotland on this page.
Princess Royal Trust for Carers : www.princessroyaltrust.org.uk I don’t personally know anyone who’s used this, but it seems worth a try. ‘The Princess Royal Trust for Carers has been fighting to provide carers with the support they so desperately need. The Trust understands that few of us plan to become carers, so when a caring role starts, every carer needs an expert to guide them through the maze of services, rules and entitlements. For a carer, this can make the difference between keeping and losing their job, or between staying healthy and collapsing under the stress. At the heart of The Trust is a unique network of 144 independently-managed Carers’ Centres, 89 young carers’ services and interactive websites (www.carers.org and www.youngcarers.net) which deliver around the clock support.’
Edinburgh Carers Council : www.edinburghcarerscouncil.co.uk . ‘We are an independent organisation that provides advocacy, information and learning opportunities to carers; regardless of where they live; who support someone who is in hospital, uses mental health services or has a mental disorder in the City of Edinburgh.’
The Eating Disorder Association of Ireland : www.bodywhys.ie ‘Bodywhys provides a range of support services for people affected by eating disorders, including specific services for families and friends.’
National Eating Disorders Association : www.nationaleatingdisorders.org . ‘NEDA is here to support the millions of families whose loved ones are battling eating disorders. How do we do it? By offering the latest information, resources, action-oriented advocacy and media campaigns to educate the public and policymakers and, most importantly, a sense of community to people often feeling alone and overwhelmed in their struggle to access quality, affordable care.’
EDANZ is active and has a helpful website: www.ed.org.nz They provide support, information, and resources for carers of people with eating disorders, educate doctors, nurses and other medical professionals working with eating disorder patients and lots more.