Sunday 25 November 2012

How shall I begin to describe the FEAST(UK) conference?

I've just returned from two amazing days surrounded by caring parents, professionals and the Great and the Good (and the Positively Awesome) of the UK Eating Disorders world. I can't even begin to describe what we learned and discussed, it would take far, far too long and you can see a series of free-to-view videos of the event here (see all the various videos from the weekend on the right of the page - ignore the ads, that's why it's free, and we had no control over them). Here are some bullet points of what shone out of this conference for me - not just via the talks, presentations and workshops, and the panel questions-and-answer sessions that followed, but by me going around and talking to other parents about their individual stories:

  1. Eating disorders are biologically-based brain conditions i.e. the brain is "wired up wrong", thought to be genetically based. Although environmental factors might trigger eating disorders like anorexia, they don't *cause* eating disorders. And most important of all, parents are not to blame. 
  2. Successful treatment focuses around food (re-feeding) first and brain second - not the other way round.
  3. Given the right treatment and support, full recovery is possible and there is no reason why anyone shouldn't recover from anorexia, bulimia or any other eating disorder.
  4. Eating disorder treatment in the UK is a post-code lottery. We heard about the Good, the Bad and the positively Ugly of UK eating disorders treatment (through talking with parent delegates).
  5. Too many treatment teams follow outdated methods. Imagine if this was cancer or another life-threatening illness? Imagine if clinicians weren't keeping up to date with the latest trail-blazing advances in the world of cancer research and treatment? (Through discussions.)
  6. GPs receive little or no training about eating disorders yet they are usually our first point of contact as parents of a young person with an eating disorder. Crazy. (Through discussions / talking with parents.)
  7. All too often families were not being taken seriously at GP level and had to fight for their child to get referred for treatment. Some of the comments made by GPs, nurses, etc were positively unhelpful, to say the least. (Through discussions / talking with parents.)
  8. Once referred, the waiting list for NHS treatment is often far too long. Correct me if I'm wrong, but I think we must win the prize for the longest wait at 18-22 weeks for an initial assessment, let alone treatment? (Although, as you know, we were eventually fast-tracked into treatment when Ben ended up in the cardio ward with a pulse rate of 29bpm.) (Through discussions / talking with parents.)
  9. The quality and delivery of NHS eating disorder treatment in the UK varies wildly. Dangerously so, in some cases. (Through discussions / talking with parents.)
  10. Patients are often being discharged too soon especially in the case of 17 or 18 year olds who have reached the age limit for CAMHS treatment. Then they are often left high and dry.
  11. Parents are having to fight too hard to get (a) treatment and (b) good and effective treatment. You shouldn't have to fight for this while you are fighting to save your child's life. You shouldn't have to fight for prompt, good and effective treatment, period. I heard some horror stories, I really did... (Through discussions / talking with parents.)
  12. Young people are dying. Needlessly dying. But they are dying - and I talked to people who have been with young people while they were dying from starvation. (Through discussions / talking with parents.)
And yet learning about what works and what doesn't, and the in's and out's of eating disorders can be so very simple. We know because we've just spent two days doing this via a range of speakers including Professor Janet Treasure, Gill Todd, Susan Ringwood CEO of B-eat, representatives from the Succeed Foundation and a host of others who rank amongst the world's best when it comes to successfully treating eating disorders and avoiding relapse.

We listened to presentations and talks, heard about the latest research, listened to parents' testimonials, heard about highly successful support groups that are springing up across the country (albeit all too thinly spread) and underwent a series of practical workshops that got us all really thinking about how we, as carers, can successfully help our children recover from this devastating illness.

Okay, it's probably not *that* simple - but I, personally, learned enough over those two days to know what works and what doesn't. Just knowing what doesn't work is vital, I believe, because all too often our children are being given outdated treatment - and / or GPs aren't identifying the eating disorder when first presented to them.

I believe that the children of those parents that were able to come along to the FEAST conference and learn all this stuff have an excellent chance of being helped towards recovery by informed and trained parents. And those that couldn't make it can watch the video clips to see what we covered.

But I worry... no, it makes me angry and furious... to think that all this education might be messed up by eating disorder professionals that are still following Stoneage treatment methods, not to mention serious underfunding, especially when it comes to establishing support groups for parents and children.

All we need to do is get clinicians and the NHS hierarchy to undergo similar education and our children's eating disorders could be dealt with effectively and permanently, and no-one need ever die.

All we need to do...

In an ideal world...

1 comment:

  1. That ideal world can be our goal - it must be, really. The parents coming after us deserve the benefit of our work NOW to spread the information and press for changes. By blogging and going to events and speaking up with our friends and families and educating our GPs and other professionals we ARE making a difference. Thank you for being part of that!!