Why didn't the cardiac consultant make the connection between a slow heart and anorexia?

Yesterday, while we were being interviewed for BBC's "Inside Out" programme, it struck me again: why the hell didn't the heart consultant at the Leeds General Infirmary make the connection between a slow pulse rate and anorexia when our son was rushed into his cardiac ward in January 2010 (see my book "Please eat...")? Especially as today I came across this excellent article which describes the connection in no uncertain terms. Surely, as a heart consultant at a leading hospital, he should have made the connection?

"No evidence whatsoever for a genetic connection"...?

Dear University Eating Disorders Researcher, Yesterday Ben and I were interviewed by the BBC for "Inside Out", to be screened in late September. As part of the slot, the BBC is also interviewing several eating disorder experts, one of which is you. So I was a little concerned when I was told that, in the course of your extensive research, you had found "no evidence whatsoever" for a genetic connection for an eating disorder. So I would like to point you towards the following resources, which are widely available, and have been compiled by recognised global leaders in eating disorders treatment, understanding and research.

Reading between the lines at the party...

Chit chat chit chat... Yesterday saw my H and me at a large party to celebrate an old friend of my H's 50th birthday, in Kent. The last time I'd seen many of these people was when Ben was little and we lived in Kent, so all of us were doing a lot of polite-conversation catching up. Most had teenage children; indeed many of them were at the party. And all of them were tucking into the massive buffet and taking advantage of free drinks before they left for a night out on the tiles.

Five hours of putting things to rights, from both sides of The Pond

With our already rip-off UK rail fares set to rise yet again, I was lucky enough to stumble across some really cheap last minute tickets to London. So yesterday - Monday - I hopped on the train to Kings Cross where I was met by one of the mums who contributed to When Anorexia Came To Visit. Then a quick tube train to Liverpool Street Station where we met up with Becky Henry who'd been to Norwich to visit the eating disorder charity, BEAT. Then another tube to Covent Garden (where Becky was alarmed to discover the only route to the surface was via lifts / elevators or a spiral staircase). After that, we sat down and talked until early evening when I had to leave to get my train back. What a day!

A great little book for parents who are just embarking on this journey

Jane Smith, Director of the UK eating disorders charity Anorexia & Bulimia Care (ABC) has sent me a copy of her book The Parent's Guide to Eating Disorders. It really is a great little book, especially for parents who are just embarking on this journey and know very little about eating disorders. I've just left a review on Amazon and here is what I've said about it:

11th hour trip to London to meet Becky Henry

Our fantastic network of parents of young people with and recovered from eating disorders spans the globe. Although I feel I know so very many of them as well as any of my local friends, I have only met up with a handful of them 'in the flesh'. Tomorrow I'm meeting up with Becky Henry who wrote the preface for my new book When Anorexia Came To Visit along with one of the mums who contributed her story to the book. The three of us have never met in person, yet we've 'talked' via the Net on many, many occasions. So I'm thrilled to have got hold of an 11th hour cheap-ish train ticket to London and back.

These days, these are the ONLY battles that go on across a table...

Remember those Bad Old Days when I used to dread our evening meals? The days when Ben would down tools and go crazy, usually triggered by something as "simple" as there being too much choice on the table. And he would rant and rave in the hallway, kicking things, banging his skull until I worried I'd hear the sound of splintering bone and yelling in that deep, dark, hopeless way that an eating disorder can sometimes make its victims do? Meanwhile, I would sit there at the table, tears streaming down my face, unable to cope and feeling utterly helpless and terrified?

Our message is about HOPE, but we can't ignore the fact that this is a deadly illness

It's a really hard stance to take: talking about hope with eating disorders and the fact that recovery IS possible. And I am always elated when I hear about another young person who has come through an eating disorder successfully. Yet we can never escape the fact that this is a deadly illness; indeed eating disorders have the highest mortality rate of any mental illness. And today I heard of another young individual who lost their fight. It's the kind of thing that has us all kicking furniture with anger at the way this insidious illness steals victims from a beautiful and promising young life - and from their loving, supportive families.

Preparing to get the word out there to the media

Today I sent the following letter to BBC's Breakfast programme and will be doing a version of it for other media - to get across the messages conveyed in When Anorexia Came To Visit.

My latest guest blog - for NEDA in the States

I am thrilled to have been guest blogging for NEDA (National Eating Disorder Association) in the States about our story: read it here. I've also been guest blogging for other eating disorder sites, too, and Mumsnet, and when I get a moment I will paste in the links here. Bit busy today, having just returned from a lovely day with one of the mums who contributed her family's (positive ending!) story to my new book When Anorexia Came To Visit and who found resources like FEAST and the Around The Dinner Table forum via this blog, well over a year ago.

We must get this book out to the people that need to read it!

My new book When Anorexia Came To Visit describes the experiences of 20 families in the UK battling with an eating disorder and the obstacles they had to overcome in the UK's provision for adolescent mental health. This isn't just a book for parents, it's a book that the health professionals themselves need to read: doctors, Child & Adolescent Mental Health Services teams (CAMHS), psychiatrists, psychologists, therapists, politicians - everyone. The problem is, how do we get it to them?