I seem to be on something of a roll with blog posts, even if the two I have in mind for the next couple of days are more re-blogs of other people's words. ICED was exciting from the outside and looks to have been even more from the inside and I'm sure it will continue to spark ideas and blogs in many for some time to come.
However (you just knew there'd be a but) one of the delights of the PC, as opposed to the little screen on my phone from where I connect to the world when I don't have a computer, is that you can fail to engage properly with six different screens at once (in other circles it's called multi-tasking). So while I was whiling away my time reading posts from and about the great and the good (Cynthia Bulik pre-tweeted her own talk, how cool is that?) I was also keeping up with fellow parents on this side of the Atlantic who are trying to get much needed help out of, or even just get some sense out of their local ED services.
I don't think that anyone at ICED stated that there even WAS a perfect system for ED care, let alone that anyone anywhere got it. In fact I know from twitter that one slide specifically mentioned how few people access treatment, how "we are reaching only the minority of individuals with ED". Whether that is because people don't present for treatment or because when they do there isn't any to hand is a moot point. It IS probably a bit of both, but if the clued up, caring, informed parents Around The Dinner Table can't make services work for them, and more importantly, for their loved ones, it really shows how dire the situation is.
On Thursday we'll have a general election. It may well take a few more weeks to get a new government but from Friday moring onwards I'll be lobbying whoever I can think of to GENUINELY IMPROVE mental health care in general and eating disorders care in particular. It's a long way from Boston US to Boston (or any other town) UK. I expect it's also a long way from ICED to real on the ground treatment in Massachusetts and if friends want signatures etc to help there I'll oblige, but my number one priority will be to lobby locally and nationally. At present the situation can only be described as dire.
Saturday, May 02, 2015
Friday, May 01, 2015
Re-blog
I have re-tweeted the tweets linking to this, but I think it's so good that I shall also re-blog it, copying the most important part (for me) out in full as well - is that re-re-blogging?
Thank you Scienceofeds for this great post http://www.scienceofeds.org/2015/04/30/reflecting-on-the-2015-international-conference-on-eating-disorder/ and in particular for your point;
We can have all the amazing ideas in the world about supportive, collaborative care, but if there is no political economic will to support the real structural changes that need to be in place to bring these to fruition we are left immobilized
Thank you Scienceofeds for this great post http://www.scienceofeds.org/2015/04/30/reflecting-on-the-2015-international-conference-on-eating-disorder/ and in particular for your point;
We can have all the amazing ideas in the world about supportive, collaborative care, but if there is no political economic will to support the real structural changes that need to be in place to bring these to fruition we are left immobilized
A birds eye view of ICED
I have been to Boston, but not this year and for no longer than a day.I have been to Eating Disorder Conferences but not to ICED and not this year.
So my "attendance" at this conference was virtual and limited - for a couple of hours each day I scoured my twitter feed (a spasmodically accessed place) for posts with the hashtag #ICED2015 and occasionally commented on those I found helpful or worrying.
From this extremely limited view of the conference I understand that it began with great stuff; genetics and exposure therapy, the importance of collaborative working and the necessity to challenge the eating disorder, went on to cite parental expressed emotion as a block to successful treatment and ended with parents being told that they were unwelcome at the table and that many of them didn't want to be there anyway.
For those of you who WERE there, how unhelpful is my view? What did I miss and what did I get completely wrong from listening to the birds?
Sunday, March 22, 2015
A reply
Friends have been commenting on this article in Psychology Today. I thought I'd have a go too, but the comments forum doesn't like me and has rejected my comment as spam. Since I spent an age sitting in my PJs writing it when I should have been getting up I thought I'd post it here rather than just swear and give up. As you'll see it has brought out the boxing kangaroo in me.
I too have been to lectures and conferences and seen seas of desperate faces. I've seen sniggers and condescension from "professionals" at those faces too.
However as many others have pointed out things are changing.
The greatest body of evidence for treatment of adolescent Anorexia Nervosa (and to a certain extent other eating disorders) is for Family Based Treatment - treatment initially pioneered by the likes of Prof Ivan Eisler in the UK and further developed in the United States. This treatment very much involves the whole family in temporarily giving up almost everything else in a bid to save their daughter (or son) and then when the danger is past, gradually handing back control of eating to the individual as and when s/he is ready.
It isn't easy. In fact it is grindingly, terrifyingly hard. None of the papers or books, even, or perhaps most especially, those by its main proponents, prepare the family for just how hard it is. And yet, because it is the best available treatment and certainly one of the cheapest, FBT is being offered in various degrees of faithfulness to the manual (by Lock and LeGrange) by many if not most CAMHS teams in the UK. Good, if basic, training designed by the team at the Maudsley Hospital is now available on-line to all CAMHS clinicians.
So we have a situation where many families of children with eating disorders will be being asked by the clinicians to whom they go in desperation to work out for themselves how to save their children's lives. In the best cases they will receive tailored support. In many more they will be lucky if they get a general leaflet about eating disorders and the suggestion that they buy a book or two (hopefully, if the team are using the manual, Lock and LeGrange's Help Your Teenager Beat an Eating Disorder). With so little by way of practical support this "FBT Lite" treatment will be successful in many cases. Families can be very resourceful. Children want to recover even if they cannot express it or comply with treatment when consumed by mental illness.
However many families will struggle.
We did.
Maybe because of comorbid mental health issues, maybe just because we weren't as resourceful as other families, we needed far more outside support than was available from fortnightly sessions with a CAMHS nurse. When we sought it we came across the kind of "professionals" who snigger or condescend. NOT bad people, but people who genuinely believe that AN is some kind of choice made as a result of bad parenting, or pressures from social media and that the sufferer has to "reach rock bottom" and that parents should not interfere with treatment.
Those beliefs, shared by us to a certain extent (what other beliefs would we have, not having had cause to think of the subject before) really got in the way of our getting any concrete support to make a success of the model.
Our FBT experience was over a decade ago. I hope that things are different now, but I fear that they are not for far too many families. Headlines like this will not help. Parent organisations such as that set up by Laura Collins offering peer support on the sometimes lonely journey will.
I still go to conferences. There are still some desperate faces, but there are some very determined and a few very angry ones nowadays too. I will be the cynical one at the back making snide remarks. To the professionals, go ahead, snigger. I will laugh with you at times. Our journey with mental ill health and the services designed to help us has thrown up some very funny situations at times. Don't you dare look condescendingly at me though or you may regret it.
I too have been to lectures and conferences and seen seas of desperate faces. I've seen sniggers and condescension from "professionals" at those faces too.
However as many others have pointed out things are changing.
The greatest body of evidence for treatment of adolescent Anorexia Nervosa (and to a certain extent other eating disorders) is for Family Based Treatment - treatment initially pioneered by the likes of Prof Ivan Eisler in the UK and further developed in the United States. This treatment very much involves the whole family in temporarily giving up almost everything else in a bid to save their daughter (or son) and then when the danger is past, gradually handing back control of eating to the individual as and when s/he is ready.
It isn't easy. In fact it is grindingly, terrifyingly hard. None of the papers or books, even, or perhaps most especially, those by its main proponents, prepare the family for just how hard it is. And yet, because it is the best available treatment and certainly one of the cheapest, FBT is being offered in various degrees of faithfulness to the manual (by Lock and LeGrange) by many if not most CAMHS teams in the UK. Good, if basic, training designed by the team at the Maudsley Hospital is now available on-line to all CAMHS clinicians.
So we have a situation where many families of children with eating disorders will be being asked by the clinicians to whom they go in desperation to work out for themselves how to save their children's lives. In the best cases they will receive tailored support. In many more they will be lucky if they get a general leaflet about eating disorders and the suggestion that they buy a book or two (hopefully, if the team are using the manual, Lock and LeGrange's Help Your Teenager Beat an Eating Disorder). With so little by way of practical support this "FBT Lite" treatment will be successful in many cases. Families can be very resourceful. Children want to recover even if they cannot express it or comply with treatment when consumed by mental illness.
However many families will struggle.
We did.
Maybe because of comorbid mental health issues, maybe just because we weren't as resourceful as other families, we needed far more outside support than was available from fortnightly sessions with a CAMHS nurse. When we sought it we came across the kind of "professionals" who snigger or condescend. NOT bad people, but people who genuinely believe that AN is some kind of choice made as a result of bad parenting, or pressures from social media and that the sufferer has to "reach rock bottom" and that parents should not interfere with treatment.
Those beliefs, shared by us to a certain extent (what other beliefs would we have, not having had cause to think of the subject before) really got in the way of our getting any concrete support to make a success of the model.
Our FBT experience was over a decade ago. I hope that things are different now, but I fear that they are not for far too many families. Headlines like this will not help. Parent organisations such as that set up by Laura Collins offering peer support on the sometimes lonely journey will.
I still go to conferences. There are still some desperate faces, but there are some very determined and a few very angry ones nowadays too. I will be the cynical one at the back making snide remarks. To the professionals, go ahead, snigger. I will laugh with you at times. Our journey with mental ill health and the services designed to help us has thrown up some very funny situations at times. Don't you dare look condescendingly at me though or you may regret it.
Tuesday, March 17, 2015
Labels
I have had a little bit of a discussion with my dear friend Laura about the label "SEED"
Is it helpful or horrid?
I realise that in between my starting this post and getting this far Laura has written more and probably already answered some of the questions I'm about to ask, but here goes anyway. I will read her comments afterwards!
It's obvious to me that those who coined the term think it is extremely helpful, necessary even. In his work on the subject Prof Paul Robinson describes how he fought for his patients who did not qualify for life enhancing, and sometimes even life saving services because they "did not have a "severe and enduring mental illness"". In an atmosphere where those most qualified to help often don't even see patients as ill but as "bringing it upon themselves" surely a label which both stresses the severity of the problem and accurately, dispassionately, marks it out for treatment is to be welcomed?
But others see it differently. They see the label as consigning those to which it is attached to a half-life of no, or inadequate treatment, doubly terrible because it is so often the lack of, or inadequate treatment that lands people in the position in the first place.
I would really like to debate this.
Probably in order to do so really well I should read the books. I have an Amazon token for my birthday. Maybe I should spend it on the main textbook, but I'm going to buy fun DVDs instead, starting with that film famous for the label given to its central character, Paddington Bear.
Is it helpful or horrid?
I realise that in between my starting this post and getting this far Laura has written more and probably already answered some of the questions I'm about to ask, but here goes anyway. I will read her comments afterwards!
It's obvious to me that those who coined the term think it is extremely helpful, necessary even. In his work on the subject Prof Paul Robinson describes how he fought for his patients who did not qualify for life enhancing, and sometimes even life saving services because they "did not have a "severe and enduring mental illness"". In an atmosphere where those most qualified to help often don't even see patients as ill but as "bringing it upon themselves" surely a label which both stresses the severity of the problem and accurately, dispassionately, marks it out for treatment is to be welcomed?
But others see it differently. They see the label as consigning those to which it is attached to a half-life of no, or inadequate treatment, doubly terrible because it is so often the lack of, or inadequate treatment that lands people in the position in the first place.
I would really like to debate this.
Probably in order to do so really well I should read the books. I have an Amazon token for my birthday. Maybe I should spend it on the main textbook, but I'm going to buy fun DVDs instead, starting with that film famous for the label given to its central character, Paddington Bear.
Thursday, March 05, 2015
No Friends, No Family - I'm footloose and fancy free!
The Friends and Family Test is the government's latest wheeze -ask people the same standardised questions about all of the various departments of the NHS and you'll be able to compare them and "choose" the best treatment for you and your loved ones - or not as the case often is. I've sneered at the waste of resources, sighed at the effort of having to impliment the stupid thing within my own tiny corner of the NHS, and then dilligently filled in questionnaires for every service with which I have had contact and enthusiastically googled for any results that have been published so far. Such is the life of the hypocritical cynic.
I did find it difficult to fill in the questionnaire for the mental health Trust. This wasn't as it might have been some years ago because of the conflict within myself over where exactly the problems we faced lay - with them or us - but because in order to start the thing you are supposed to have had recent contact with them, either as a "service user" or carer, and I haven't. My caring responsibilities have lessened as my loved one has grown up, and her contact with the local services terminated rather more abruptly than anyone would have wished when she moved away from home. I might need the service myself some time in the future, my children or grandchildren might move back to the area and need it, but for the forseeable future I have no friends or family who would be likely to go anywhere near them.
THIS IS A VERY LIBERATING FEELING
I can put my head over the parapet, get involved in pressure groups, ask awkward questions and NONE of it risks having unintended consequences on my loved ones' care. I'm free enough to take my shoes off outside Buckingham Palace and I'm free enough to be a pain in the neck to the Trust board - watch out!
I did find it difficult to fill in the questionnaire for the mental health Trust. This wasn't as it might have been some years ago because of the conflict within myself over where exactly the problems we faced lay - with them or us - but because in order to start the thing you are supposed to have had recent contact with them, either as a "service user" or carer, and I haven't. My caring responsibilities have lessened as my loved one has grown up, and her contact with the local services terminated rather more abruptly than anyone would have wished when she moved away from home. I might need the service myself some time in the future, my children or grandchildren might move back to the area and need it, but for the forseeable future I have no friends or family who would be likely to go anywhere near them.
THIS IS A VERY LIBERATING FEELING
I can put my head over the parapet, get involved in pressure groups, ask awkward questions and NONE of it risks having unintended consequences on my loved ones' care. I'm free enough to take my shoes off outside Buckingham Palace and I'm free enough to be a pain in the neck to the Trust board - watch out!
Wednesday, February 18, 2015
On both sides of the fence
This post will be even more obscure than most. Unlike many of my friends I am not a writer. Therefore this won't in any way be inspirational or educational for you. It's more like therapy for me, except that because it is public and you can see it I can't go into even the most sketchy of details, so it isn't that either. Suffice to say that although this could be about the conflicts I face combining political animal with realist, or religious observer with cynic, or wife with mother, it happens to be about being both a passonate supporter of and employee within the NHS and a parent advocate.
The chap in the picture looks fairly comfortable on his nice smooth fence, but then he's not making any effort to put a foot down on either side, let alone both, or to move in any direction.
I sometimes find myself in the position where, not only do I have one foot on each side of the fence, I'm desperately trying to walk with the people on both sides at once, not out of some false sense of "being nice" but because I genuinely believe in their cause. Even with a pretty smooth fence that can hurt!
The chap in the picture looks fairly comfortable on his nice smooth fence, but then he's not making any effort to put a foot down on either side, let alone both, or to move in any direction.
I sometimes find myself in the position where, not only do I have one foot on each side of the fence, I'm desperately trying to walk with the people on both sides at once, not out of some false sense of "being nice" but because I genuinely believe in their cause. Even with a pretty smooth fence that can hurt!
Thursday, February 12, 2015
Still living...
I'm posting this because I'm about to comment on someone else's blog and don't think it fair to be public about his views without at least giving a link back to me.
This is me, Fiona, aka Marcella, and I'm still alive.
This is me, Fiona, aka Marcella, and I'm still alive.
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