Beat have today launched a campaign to draw attention to the problems caused by the time that people with eating disorders spend waiting for specialist treatment.
I have been lucky and unlucky over the years with waiting times. I was seen in Dr R's clinic just a few weeks after my GP referred me in 1998 (and it would have been sooner were it not for my insistence that I was going to go on holiday to Seattle on my own whatever any medical professional told me). No follow up resulted from that appointment because I was due to set off for university: since I wouldn't accept the doctor's advice to postpone uni and stay for treatment, she couldn't keep me on. Over the ensuing 4 or 5 weeks, I gradually came to the realisation that I could not go to uni. If I couldn't walk down the road without leaning on my mother for support, how would I be able to manage alone in London?
So my GP re-referred me to specialist services and an appointment letter arrived. But when a further letter arrived to postpone that appointment, I broke down: I had pinned so much hope onto the thought of getting help, that the prolonging of wait for that help was unbearable. So unbearable that my dad had to take me into the GP surgery because I was unable to cope with being alive. The GP cancelled all her other appointments and rang the specialist who liaised with her over the phone to help her look after me from that day (Friday) until the Monday, when he saw me in clinic and sorted out a bed almost immediately.
Contrast this with Cambridge, where I had to wait months for an "assessment", despite them receiving a detailed referral letter from Dr R, and then had to wait further months on the hilariously oxymoronic "emergency waiting list" for therapy. Their refusal to offer me any help in 2010 followed 4 months waiting for another "assessment".
In addition to the factor of where you live and how the local service operates, the type of eating disorder someone is experiencing affects the waiting time too. Unfortunately, waiting times can be vastly different for a restricting anorexic than for someone with bulimia, where the severity of their condition is masked by their BMI. It's a situation that dangerously plays into the eating disordered mindset, since one is (essentially) encouraged to reach as low a BMI as possible in order to be taken seriously by medical professionals. Yet the medical complications of eating disorders are not dependent on weight. Heart arrhythmias can kill someone with bulimia even if her BMI falls within normal range. Someone with long-term anorexia can maintain a low weight for a perplexingly long time; this does not mean that they are ok to be left alone with no help.
I have a friend who nearly lost her life while waiting for treatment. She has given me permission to tell her story in the next post.
Showing posts with label Cambs Adult EDS. Show all posts
Showing posts with label Cambs Adult EDS. Show all posts
Monday, October 07, 2013
Thursday, October 03, 2013
In my occasional series...
...that is indicative of the rather random collection of subjects about which I write, here is this week's search keywords:
Disappointingly, "darning pointe shoes" hasn't scored any hits this week and nor has the old favourite "Dr Jane Shapleske". If she googles herself, I'm pretty sure that this blog is not where she wants to end up.
Anyway, sometimes I feel that I should be more focused because rule 1 of "being a good blogger" is to have a coherent theme. But this particular blog has always been about the different parts of me, whether that is darning ballet shoes, writing about eating disorders, knitting, making jam, posting photos of my dogs, reviewing a theatrical production .... and, yes, ranting about the poor standard of care I received, specifically from Dr Jane Shapleske and Cambs Adult EDS, while living in the CPFT area.
And maybe it's important that I hold onto that variety. Because even though it's tempting for me to focus on the ED or mental health stuff, I don't want it to reflect the way that anorexia takes me over when I'm poorly and leaves me unable to think anything except the anorexic thoughts. So I'm going to carry on enjoying the diverse ways that people end up here, from searching a variety of topics, and celebrating that all of those things are part of me.
Disappointingly, "darning pointe shoes" hasn't scored any hits this week and nor has the old favourite "Dr Jane Shapleske". If she googles herself, I'm pretty sure that this blog is not where she wants to end up.
Anyway, sometimes I feel that I should be more focused because rule 1 of "being a good blogger" is to have a coherent theme. But this particular blog has always been about the different parts of me, whether that is darning ballet shoes, writing about eating disorders, knitting, making jam, posting photos of my dogs, reviewing a theatrical production .... and, yes, ranting about the poor standard of care I received, specifically from Dr Jane Shapleske and Cambs Adult EDS, while living in the CPFT area.
And maybe it's important that I hold onto that variety. Because even though it's tempting for me to focus on the ED or mental health stuff, I don't want it to reflect the way that anorexia takes me over when I'm poorly and leaves me unable to think anything except the anorexic thoughts. So I'm going to carry on enjoying the diverse ways that people end up here, from searching a variety of topics, and celebrating that all of those things are part of me.
Monday, September 30, 2013
Sectioned
Yesterday, quite deliberately, I entered a discussion on Facebook about a placard used in a protest on Saturday. I don't live in Stafford and I think that some people saw my comment as an unwelcome intervention in their group. But, as other "ticker" watchers will know, sometimes you see a friend participating in a discussion and you want to click "like" on their comment but need to join the group to join or you see things with which you disagree, fundamentally, and become itchy with the need to join in. So I asked to join the group and once that request had been processed, I posted my comment.
Obviously, this blog post is going to be spectacularly meaningless without reference to the placard in question. I don't own the photo ... and don't want to identify those who made it (who I'm certain had no intention to offend). So I've taken a screencap of the sign in isolation.
Firstly, I am jolly proud of myself for not allowing myself to score points from the poor punctuation of the sign or the slightly hilarious decision to censor the word "piss". Instead, I wrote this:
"As someone who has been sectioned, I find the placard upsetting. Sectioning isn't to do with being "locked up" for being "mad" or putting forward "nonsense"; it's to do with very real health problems that can endanger one's own life (which is the reason why I was sectioned; I was no danger to anyone else).
Stafford Hospital is a very important cause for which to fight and it's possible to fight for it purely on its own merits, without this casual stigma.
For what it's worth, I very, very rarely admit to having been sectioned in public because of the misinformation, perpetuated in signs such as this, that somehow it means you have been "utter madmen" or dangerous.
It's not about political correctness or clearcut issues of offence vs. tolerance. To me, it is about taking an experience that is one of the most deeply distressing thing that can happen to people, including patients at Stafford Hospital, and turning it into a joke."
But even though it made me feel vulnerable and criticised, I'm not sorry that I joined in the discussion. I am pretty open about my mental health. Most people who know me know about my anorexia and know that I've been hospitalised for it. But I only rarely talk about New Year's Eve 2010: the day I was sectioned. And this sign helped me to see why. Because it articulates, however crudely, the prevalent view of sectioning. It's about locking up madmen. It's about keeping the "normal" people safe from the "crazy" ones. Or the bad ones. It's Broadmoor or Ian Brady in Ashworth Hospital.
In reality, sectioning is, for most people, miles away from that. The irony for me was that I had been asking for help for the three years prior to being sectioned. Unfortunately, because I had been left to face everything alone in Cambridge, by the time I saw the consultant in Birmingham, I was very poorly. I didn't refuse to go into hospital. But, once I was there, everything was too terrifying. The anorexia was alive and well; I was not.
Just after arriving, I had to go into lunch but couldn't even touch the sandwich because I was afraid of the margarine on my fingers and the feel of it on my hands, let alone contemplate those textures, the fat, the taste, the everything, in my mouth.
Panic attack, running from the room, sobbing in a meeting with a nurse and dietitian. They explained that (with knowledge from previous admissions of how much I struggle with facing food) if I hadn't managed to eat within 24 hours, assessment for section 3 would be put in place.
Later that afternoon, there was a community meeting and other patients, much further along in treatment, were planning a rehab outing to Nandos and the next "takeaway club". Another panic attack, fleeing to my room, needing to flee this place altogether. Needing my dog, needing his love, knowing he'd be wondering where I was. All I could tell them was that I didn't need to be there, that I'd be fine at home. That I'd be fine as long as I didn't have to face all this food, as long as no one was making me eat. That being here would make me poorly.
I can't remember much at all about what happened until the next afternoon. I remember people telling me that I needed to say that I would stay voluntarily. But I knew, knew without a doubt, that they were wrong and I would be better if I wasn't there, if I was home with Benji, if people weren't trying to give me all this terrifying food. A nurse who I'd known for 12 years, now the unit manager, sat with me and tried to engage with my rational brain. My parents were called in (sectioning needs a closest relative) and tried to explain that I had to say I would stay there. Why couldn't I say I would stay there? I had to talk to a social worker. She had long hair. She was nice. I've no recollection, whatsoever, of what was discussed. The doctor on call had been Dr R's trainee on my last admission; he reminded me of the time I beat him at Scrabble.
I don't remember the moment that It Happened. I don't remember being told that I was being held under Section Three. I don't remember trying to leave but being unable to put my shoes on because I was too confused to put them on the right feet (a nurse told me about this months later; he said that was the moment he knew that sectioning was unavoidable and that the Linda he knew wasn't present).
It was probably more distressing for my parents because they weren't too poorly to understand it. They were witnessing their daughter, who had recently completed a PhD, being detained under the Mental Health Act. And this was all happening on New Year's Eve, universally a time of parties and celebrations. I can't even imagine.
So yes, to me, casual juxtaposition of sectioning and madman isn't even offensive: it's painful. And it's not even that I don't have a sense of humour about my experiences. I'm often told that I'm the queen of black humour. But that sign is as stigmatising as the bloody costume with a meat cleaver. It equates mental illness with being dangerous. I have no access to relevant statistics but I imagine that the majority of sections take place because of risk to the individual's own safety, whether through risk of self harm or suicide or because anorexia is driving someone close to death. The implication that those of us who mind about these things need to lighten up or get a sense of humour pisses me off. And I may not be 2000 pregnant women but you still don't want to piss me off.
Edit: if you too have been sectioned and would like to help inform a new code of practice, take a look at this storify by @_sectioned
Obviously, this blog post is going to be spectacularly meaningless without reference to the placard in question. I don't own the photo ... and don't want to identify those who made it (who I'm certain had no intention to offend). So I've taken a screencap of the sign in isolation.
Firstly, I am jolly proud of myself for not allowing myself to score points from the poor punctuation of the sign or the slightly hilarious decision to censor the word "piss". Instead, I wrote this:
"As someone who has been sectioned, I find the placard upsetting. Sectioning isn't to do with being "locked up" for being "mad" or putting forward "nonsense"; it's to do with very real health problems that can endanger one's own life (which is the reason why I was sectioned; I was no danger to anyone else).
Stafford Hospital is a very important cause for which to fight and it's possible to fight for it purely on its own merits, without this casual stigma.
For what it's worth, I very, very rarely admit to having been sectioned in public because of the misinformation, perpetuated in signs such as this, that somehow it means you have been "utter madmen" or dangerous.
It's not about political correctness or clearcut issues of offence vs. tolerance. To me, it is about taking an experience that is one of the most deeply distressing thing that can happen to people, including patients at Stafford Hospital, and turning it into a joke."
But even though it made me feel vulnerable and criticised, I'm not sorry that I joined in the discussion. I am pretty open about my mental health. Most people who know me know about my anorexia and know that I've been hospitalised for it. But I only rarely talk about New Year's Eve 2010: the day I was sectioned. And this sign helped me to see why. Because it articulates, however crudely, the prevalent view of sectioning. It's about locking up madmen. It's about keeping the "normal" people safe from the "crazy" ones. Or the bad ones. It's Broadmoor or Ian Brady in Ashworth Hospital.
In reality, sectioning is, for most people, miles away from that. The irony for me was that I had been asking for help for the three years prior to being sectioned. Unfortunately, because I had been left to face everything alone in Cambridge, by the time I saw the consultant in Birmingham, I was very poorly. I didn't refuse to go into hospital. But, once I was there, everything was too terrifying. The anorexia was alive and well; I was not.
Just after arriving, I had to go into lunch but couldn't even touch the sandwich because I was afraid of the margarine on my fingers and the feel of it on my hands, let alone contemplate those textures, the fat, the taste, the everything, in my mouth.
Panic attack, running from the room, sobbing in a meeting with a nurse and dietitian. They explained that (with knowledge from previous admissions of how much I struggle with facing food) if I hadn't managed to eat within 24 hours, assessment for section 3 would be put in place.
Later that afternoon, there was a community meeting and other patients, much further along in treatment, were planning a rehab outing to Nandos and the next "takeaway club". Another panic attack, fleeing to my room, needing to flee this place altogether. Needing my dog, needing his love, knowing he'd be wondering where I was. All I could tell them was that I didn't need to be there, that I'd be fine at home. That I'd be fine as long as I didn't have to face all this food, as long as no one was making me eat. That being here would make me poorly.
I can't remember much at all about what happened until the next afternoon. I remember people telling me that I needed to say that I would stay voluntarily. But I knew, knew without a doubt, that they were wrong and I would be better if I wasn't there, if I was home with Benji, if people weren't trying to give me all this terrifying food. A nurse who I'd known for 12 years, now the unit manager, sat with me and tried to engage with my rational brain. My parents were called in (sectioning needs a closest relative) and tried to explain that I had to say I would stay there. Why couldn't I say I would stay there? I had to talk to a social worker. She had long hair. She was nice. I've no recollection, whatsoever, of what was discussed. The doctor on call had been Dr R's trainee on my last admission; he reminded me of the time I beat him at Scrabble.
I don't remember the moment that It Happened. I don't remember being told that I was being held under Section Three. I don't remember trying to leave but being unable to put my shoes on because I was too confused to put them on the right feet (a nurse told me about this months later; he said that was the moment he knew that sectioning was unavoidable and that the Linda he knew wasn't present).
It was probably more distressing for my parents because they weren't too poorly to understand it. They were witnessing their daughter, who had recently completed a PhD, being detained under the Mental Health Act. And this was all happening on New Year's Eve, universally a time of parties and celebrations. I can't even imagine.
So yes, to me, casual juxtaposition of sectioning and madman isn't even offensive: it's painful. And it's not even that I don't have a sense of humour about my experiences. I'm often told that I'm the queen of black humour. But that sign is as stigmatising as the bloody costume with a meat cleaver. It equates mental illness with being dangerous. I have no access to relevant statistics but I imagine that the majority of sections take place because of risk to the individual's own safety, whether through risk of self harm or suicide or because anorexia is driving someone close to death. The implication that those of us who mind about these things need to lighten up or get a sense of humour pisses me off. And I may not be 2000 pregnant women but you still don't want to piss me off.
Edit: if you too have been sectioned and would like to help inform a new code of practice, take a look at this storify by @_sectioned
Wednesday, September 25, 2013
"exquisitely on death's doorstep"
Over the weekend, I read this post (and the linked post at The Kartini Clinic's blog along with the discussion about the article on Facebook and Charlotte's second post on the topic). I've been thinking about it ever since.
I have two (at least) separate strands to my thoughts and I'm not convinced that I can create a single coherent post ... However, it's worth a try!
Firstly and perhaps a topic that I should save for another post, I was taken aback by some of the antagonism between adults with eating disorders and the parent advocates. While most outsiders would believe that we are, or should be, all fighting for the same goal, there seems to be a lot of disagreement over how that goal should be achieved. As someone who hadn't really heard of FEAST and their work until a couple of weeks ago, I've found reading some of their posts, advice and research very challenging ... and extremely emotional. Therefore my instinct about the antagonism is that both sides, the adults with long-term EDs and the parents who have children with/recovered from EDs, find the other to be unsettling. A 16-year old with anorexia told me back in June that the thought of becoming me (i.e. if her eating disorder continued) was horrible and going to be motivation in her recovery. Which felt pretty crap at the time because no one wants their life summed up as someone else's idea of The Worst Thing Ever. But it's obvious that any parent seeing adults who've been struggling with the illness for 20+ years would want to do all that they can to ensure that this is not the future for their own daughter or son. Whereas those of us who see the children and teenagers getting better with new models of treatment can't help but grieve for our younger selves. And I can imagine that, rather than facing that grief and sadness, some people might choose instead to challenge the validity of that treatment model.
Hopefully, this is a segue into the other strand of my thinking to do with the reported speech of a clinician who described seeing a patient for 4 years of therapy while that patient was "exquisitely on death's doorstep". Rightly, this report led to a great deal of debate at the time (you only need to look at the comments on the Kartini blog post to see how heated the discussion became).
My own take on it is rather difference. Having been refused treatment in Cambridgeshire because I was poised in a chronic state from which they couldn't guarantee any tidy outcome to report in their figures for NICE (or whoever it is to whom health authorities are now accountable) and having become suicidal from that experience, part of me wishes to applaud the therapist for offering some kind of support to an individual with an isolating and debilitating illness. Clearly, we can all agree that someone "on death's doorstep" would be better served by an inpatient experience. However, none of us know the reasons why this was not possible for this person. If it was in the US (which I think it was), perhaps there were insurance issues at play. In the UK, my own experience has taught me that some eating disorder services will not offer inpatient treatment to individuals who do not fit their own narrow criteria for admission, even when that denial is condemning a person to an existence that barely qualifies as life.
And that is where I find the clinician's description to be verging on offensive. Because there is absolutely nothing "exquisite" about being desperately ill with anorexia. Whether it's waking up in the morning and feeling unable to face another 24 hours of constant thoughts about greed and fat and food and purging and needing to buy more iceberg lettuce from Morrisons (and being ashamed because it's all you buy and the shop assistants there all give you judging looks as you put the salad, cheap diet cola and sugar-free icepops on the checkout) and walking and being too cold to get out of bed but hating yourself for the laziness if you don't. Or whether it's the physical stuff: bleeding, chapped hands. Body covered with downy hair. Stinky breath. Sleepless nights. Peeing as you vomit. Anal leakage as you walk down the road in Cambridge and have to meet with someone but have no change of clothes and no way to get clean.
I could write more. I could talk about the stuff we all know in terms of organ damage and my friends who've had heart attacks or gastrectomies. Or died.
But it's the piss and the poo that, to me, is the clearest way to deromanticise the notion of a beautiful thinness, an exquisite skeletal existence. Because I imagine that patient, if she'd been speaking at the conference, would not have described those years of hell as exquisite, even if she'd thanked the therapist for supporting her through them and not making her face them alone.
I have two (at least) separate strands to my thoughts and I'm not convinced that I can create a single coherent post ... However, it's worth a try!
Firstly and perhaps a topic that I should save for another post, I was taken aback by some of the antagonism between adults with eating disorders and the parent advocates. While most outsiders would believe that we are, or should be, all fighting for the same goal, there seems to be a lot of disagreement over how that goal should be achieved. As someone who hadn't really heard of FEAST and their work until a couple of weeks ago, I've found reading some of their posts, advice and research very challenging ... and extremely emotional. Therefore my instinct about the antagonism is that both sides, the adults with long-term EDs and the parents who have children with/recovered from EDs, find the other to be unsettling. A 16-year old with anorexia told me back in June that the thought of becoming me (i.e. if her eating disorder continued) was horrible and going to be motivation in her recovery. Which felt pretty crap at the time because no one wants their life summed up as someone else's idea of The Worst Thing Ever. But it's obvious that any parent seeing adults who've been struggling with the illness for 20+ years would want to do all that they can to ensure that this is not the future for their own daughter or son. Whereas those of us who see the children and teenagers getting better with new models of treatment can't help but grieve for our younger selves. And I can imagine that, rather than facing that grief and sadness, some people might choose instead to challenge the validity of that treatment model.
Hopefully, this is a segue into the other strand of my thinking to do with the reported speech of a clinician who described seeing a patient for 4 years of therapy while that patient was "exquisitely on death's doorstep". Rightly, this report led to a great deal of debate at the time (you only need to look at the comments on the Kartini blog post to see how heated the discussion became).
My own take on it is rather difference. Having been refused treatment in Cambridgeshire because I was poised in a chronic state from which they couldn't guarantee any tidy outcome to report in their figures for NICE (or whoever it is to whom health authorities are now accountable) and having become suicidal from that experience, part of me wishes to applaud the therapist for offering some kind of support to an individual with an isolating and debilitating illness. Clearly, we can all agree that someone "on death's doorstep" would be better served by an inpatient experience. However, none of us know the reasons why this was not possible for this person. If it was in the US (which I think it was), perhaps there were insurance issues at play. In the UK, my own experience has taught me that some eating disorder services will not offer inpatient treatment to individuals who do not fit their own narrow criteria for admission, even when that denial is condemning a person to an existence that barely qualifies as life.
And that is where I find the clinician's description to be verging on offensive. Because there is absolutely nothing "exquisite" about being desperately ill with anorexia. Whether it's waking up in the morning and feeling unable to face another 24 hours of constant thoughts about greed and fat and food and purging and needing to buy more iceberg lettuce from Morrisons (and being ashamed because it's all you buy and the shop assistants there all give you judging looks as you put the salad, cheap diet cola and sugar-free icepops on the checkout) and walking and being too cold to get out of bed but hating yourself for the laziness if you don't. Or whether it's the physical stuff: bleeding, chapped hands. Body covered with downy hair. Stinky breath. Sleepless nights. Peeing as you vomit. Anal leakage as you walk down the road in Cambridge and have to meet with someone but have no change of clothes and no way to get clean.
I could write more. I could talk about the stuff we all know in terms of organ damage and my friends who've had heart attacks or gastrectomies. Or died.
But it's the piss and the poo that, to me, is the clearest way to deromanticise the notion of a beautiful thinness, an exquisite skeletal existence. Because I imagine that patient, if she'd been speaking at the conference, would not have described those years of hell as exquisite, even if she'd thanked the therapist for supporting her through them and not making her face them alone.
Tuesday, September 24, 2013
Talking to OTs
I participated in a Twitter chat last week with occupational therapists. It was a good experience. The OTs were extremely receptive to hearing from those of us who have worked with OTs from "the other side". Like anyone with a long history of engagement with mental health services, I had many stories to share and writing them down helped me to reflect on certain past events. Some are long enough ago that I no longer feel anything about them (except as narrative); others remain painful, especially one relating to my ongoing pain about not having (and having not prospect of having) children.
After the chat had finished, the facilitator asked whether anyone would consider writing a "Dear OTs" post for their blog. I offered to do so and was published today, along with a very poignant piece from a woman who cares for her husband with BPD.
When it went "live", I retweeted the link and shared it on Facebook. Almost immediately I deleted it from Facebook. And that made me realise that I have some subconscious barriers between the different versions of "me" that exist online. I'm very open about my anorexia but I have only linked to my blog once on Facebook. And there is very little crossover between the people with whom I interact on Twitter and my Facebook friends. I can't even rationally explain why I couldn't, today, cope with the idea that suddenly all those worlds would collide. But it did create a weird vulnerability, perhaps because my letter to the OTs had been so open and because I needed to protect myself a little bit by not sharing it to my Facebook friends.
If I'm rambling, please forgive me. It's been a long day: a morning spent in the cardiology dept of the QE, which began with high anxiety when two nurses decided to treat me like shit because I refused to let them weigh me (I had an accurate weight to tell them and a weight from different scales at a different time wearing different clothes would have set me up for a horrible day inside my head with thoughts of greed and fatness and all that incessant and debilitating ED whispering). 2 hours later, post-ECG, post consultant chat and post blood tests, I was on the way home. Back again on Friday for my echo.
And I'm tired because of things that are too internalised to write here: conversations that I've had that I want to shut out and that terrify me...
After the chat had finished, the facilitator asked whether anyone would consider writing a "Dear OTs" post for their blog. I offered to do so and was published today, along with a very poignant piece from a woman who cares for her husband with BPD.
When it went "live", I retweeted the link and shared it on Facebook. Almost immediately I deleted it from Facebook. And that made me realise that I have some subconscious barriers between the different versions of "me" that exist online. I'm very open about my anorexia but I have only linked to my blog once on Facebook. And there is very little crossover between the people with whom I interact on Twitter and my Facebook friends. I can't even rationally explain why I couldn't, today, cope with the idea that suddenly all those worlds would collide. But it did create a weird vulnerability, perhaps because my letter to the OTs had been so open and because I needed to protect myself a little bit by not sharing it to my Facebook friends.
If I'm rambling, please forgive me. It's been a long day: a morning spent in the cardiology dept of the QE, which began with high anxiety when two nurses decided to treat me like shit because I refused to let them weigh me (I had an accurate weight to tell them and a weight from different scales at a different time wearing different clothes would have set me up for a horrible day inside my head with thoughts of greed and fatness and all that incessant and debilitating ED whispering). 2 hours later, post-ECG, post consultant chat and post blood tests, I was on the way home. Back again on Friday for my echo.
And I'm tired because of things that are too internalised to write here: conversations that I've had that I want to shut out and that terrify me...
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