Thursday, October 17, 2013

Converging

A couple of news stories were doing the rounds on Twitter yesterday. Firstly, there was the news of Thorpe Park's Asylum Horror ride, described thus: "Enter a chaotic environment of noise, light and live action, as The Asylum opens its doors to new patients. Watch your back as you encounter dead ends, hidden corners and eyes that watch you from the shadows".
More worryingly, it was reported that there is a dangerous shortage of mental health beds in England at the moment. 

Both of these stories seemed to converge on my current situation and it's been hard to spend any time on Twitter without a) thinking about what they mean for me; b) not saying more than I'm ready to about where I am right now.

Since June, there has been discussion of whether I should do another inpatient admission. But a recent illness caused my weight to drop to a point where my next appointment with the consultant was brought forward. And when I saw him, his advice was not at all ambiguous: he wants me to go in as soon as a bed becomes available. 

This leaves me in a funny limbo, half preparing for something that seems inevitable, glad that there isn't a bed because I don't want to go in, to be away from my dogs, to have to face those awful first weeks of treatment, not wanting to be rung up with an admission date, yet anxious because I've no idea when that date will be. 

If the wait turns out to be long, it's possible that Dr R may have to look elsewhere for a bed for me. Apparently, changes to the NHS mean that each unit has to accept patients from anywhere in the country, potentially creating a situation where 1) a unit is full in Leeds so a patient from Leeds is sent to Manchester; 2) the Manchester unit is now full so someone from Manchester has to go to London; 3) when a London patient needs a bed, the London unit is full and that patient must go to Birmingham; 4) then Birmingham is full when someone local needs a bed. Obviously, I've no idea what the current situation is in the Birmingham unit or where the current patients are from. My reality, though, is that while in this limbo, I do not know whether I'll end up in hospital just 15 minutes from my home or 3 hours from home. 

As for the two news stories? I asked Beat on Twitter about whether there is data for shortages in specialist services, including EDs, because as far as I could tell, the information reported focused only on acute beds. I genuinely want to know about how far this extends into specialist services because it is impacting on my life.

And Thorpe Park's portrayal of an asylum as a place of horror is simply one of many reasons why it is hard to be open about this forthcoming hospital admission. I'm "lucky" that I've been in hospital before and I know that it is nothing like a theme park ride. But if it were 15 years ago and the eve of my first adult inpatient admission, when I knew I was about to be admitted to hospital but had never been to a psychiatric ward before, I can't even imagine how anxious it would have made me. 

This post is rather fragmentary and not saying everything I want. I've barely mentioned how needing to go into hospital feels like a betrayal of the online pro-recovery community because it means that I'm failing at recovery or any of the other thoughts that have been whizzing round my head since Monday. But I've said something. I've admitted that it's (probably) happening. And that's a start.

Monday, October 07, 2013

A dangerous weight

In my last post, I mentioned that a close friend had given her permission for me to tell the story of how the wait for eating disorder treatment nearly killed her and has left her with permanent physical problems after life-changing emergency surgery.

Jen saw our eating disorder consultant's SHO about 6 months after her GP started the referral process. During this time, her restricting anorexia progressed to binge/purge. In desperation, she had paid £200 to see a consultant privately but eventually the NHS appointment came through. Despite the clear risk factors of someone who was restricting *and* binge/purging, the SHO simply put her on a waiting list for therapy. Her BMI was not very low, which seems to have blinded him to the serious problems inherent in her eating disorder. She saw him 5 more times, once a month, feeling increasingly desperate and yet he always said 'you're on the waiting list, maybe next month...'

A therapy assessment appointment came through and Jen attended the first of six sessions at the end of July but wasn't able to go to her session the following week. Because she was in intensive care following an emergency gastrectomy. Until I met Jen, I had no idea what a gastrectomy was. Just as a tonsillectomy is the removal of the tonsils and an appendectomy is the removal of the appendix, a gastrectomy is the removal of your gastric organ: your stomach. No one can explain the precise reasons behind Jen's experience so I can only describe it from her eyes as it happened. She had binged but was suddenly unable to purge and excruciating abdominal pain began to build.

Jen's boyfriend took her to A&E, where they were told there would be a 4 hour wait despite her being doubled over and practically crying in pain. Eventually she was seen and put on a ward because doctors couldn't work out what was wrong. After another day of tests and attempts to drain her stomach, they decided to operate because of the risk of sepsis. They discovered that about half of the tissue had died (known as necrosis) and the stomach was very enlarged. It would be incredibly dangerous for this dead tissue to remain in her system, because sepsis kills very, very quickly, so the only safe option was for surgeons to remove the entire stomach.

After the operation, Jen had 10 days of very serious illness, with cardiac problems, pleural effusions and other complications that kept her in ICU. The many months of physical rehabilitation have been followed by years of post traumatic stress: facing the start of eating disorder treatment while also adapting to the challenges of life without a stomach, when food must be consumed "little and often" in order for nutrients to be absorbed by the intestines and many ingredients are cannot be digested. Jen's life is dominated by episodes of hypoglycaemia and constant tiredness, as well as PTSD. Her wait for treatment, lengthened because doctors were too focused on weight, turned out to be very dangerous indeed.

Weighting the evidence

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.

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. 

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

More from Asda

My brain is in superactive mode this morning and wants to Write All The Things. However, the first thing I must do is to report that I had further communication from Lisa Sutcliffe of Asda on Friday. She was sorry that I was unhappy with her response but said that she couldn't provide details of internal investigations. However, she assures me that they are taking action, which is good to hear.

I've also realised that if I were A Good Blogger, I would have tagged all my posts so that everything is nicely linked for readers who are interested in a particular topic. I will try to a) work out how to do it; b) do some retroactive tagging on (at least) recent posts.


Saturday, September 28, 2013

Benji was feeling left out

... because Midge has been all over Twitter and pictured on the Mind blog post the other day.

To make him feel better, here he is. Sometimes with a #mentalpatient (wearing his own doctoral red gown/shrug on the day of PhD graduation, in the garden a couple of years ago, on his trip to Crufts and having a cuddle on an average day). But the first one demonstrates his inherent distrust of French horns ... and the reason why I no longer play: it's hard to practice when a small dog tries to attack the strange metal thing even before it starts making loud noises!






Friday, September 27, 2013

Can you tell?

Yesterday, it was pretty wonderful to see all the photos that people posted on Twitter with the #mentalpatient hashtag. The main point of these pictures was to show that mental illness is (mostly) invisible and that we look like a diverse collection of individuals, like a collection of people. Which is what we are.

Except, with anorexia, that's not always true. Our mental health is illustrated in our bodies, the size of our limbs or the flesh on our cheeks. 

Some of the pictures posted on Mind's and Time to Change's twitter feed showed significant events in people's lives, achieved while living with mental health difficulties. And I considered posting a photo from my PhD graduation, which took place about 8 weeks into my 5th adult inpatient admission for anorexia and a few days after my section was lifted in the ward round. That photo shows that instead of wielding a cleaver or wearing an orange jumpsuit, this #mentalpatient was given her doctorate in a ceremony at Senate House. 

Trouble is that the photos show an ill person. Like lots of (but not all) other people with eating disorders, I struggle with perceiving what I look like in the present moment. Numerically speaking, in terms of BMI or kilos, professionals can define me as underweight when all I can see is the fat on my body and the size of my fat face. On one level, I understand the metaphor used by my eating disorders psychiatrist of colour blindness, that I need to accept that my red is green or my green is red in order not to crash when I am in the world at metaphorical traffic lights (!); but the truth is that real emotional belief is lacking and I am aware only of my largeness.

On day of my PhD graduation, I wasn't aware that I looked pale and (probably) a bit underweight but I can see with hindsight that other people might have seen illness in my appearance and therefore I posted a photo of knitted poodles instead of me!



Today, with time to think and to look at the photographs objectively, I've found one where I think I look ok. I think (hope) that this is not the sort of photo that would be triggering to anyone else with an eating disorder (which is another horrible can of worms when trying to be a positive online presence yet facing very real every day struggles with anorexia). It shows my reality. The reality of living with an illness for most of my life, yet living my life anyway. The reality of multiple hospital admissions ... and multiple degree graduation ceremonies. 

Nonetheless, I'm rather delighted that my knitted poodles have been so popular and have gained their own twitter fans. Given that they are still a standing joke at my EDU, 10 years after the craze first took hold of us all and 5 years after the move to a new building with the demolition of QEPH, it's good to know that they have their admirers. The dietitian who greeted me a couple of years ago with "please don't start another infestation of poodles" will probably never be among them!

Thursday, September 26, 2013

A response from Asda, after a surreal day

Just after 5pm, I received a reply to the email that I sent to Andy Clarke, CEO of Asda. Rather than replying himself, the message had been forwarded to Lisa Sutcliffe in the Directorate or Executive Relations dept. 

I don't have her permission to paste her email here. However it does not differ in any substance from the tweets sent by Asda last night, even including the same phrases: "unacceptable error"; "withdrawn immediately"; we "will be making a sizeable donation" to Mind

So I've replied to request that the specific points I made in my email be addressed:

"Dear Ms Sutcliffe,

Thank you for apologising. If I missed the part of the email where you explained how you will be launching an investigation into the culture of your institution that allowed this product to reach the shelves, could you draw my attention to it now? If you are not launching such an investigation, please give me your reasons for this failure to respond to very real concerns about how an organisation can have a prejudicial attitude so embedded within it that it took outsiders to point out how dreadfully stigmatising the costume was. 

You may be aware that I posted my original email to Mr Clarke on my blog. This has today been reposted by Mind. 

I've promised to keep readers up to date with any responses that I get. Unfortunately there isn't much in your message that is worth repeating since it regurgitates the statements that your company has been making all day."

This follows a day that has been rather overwhelming. My twitter "interactions/mentions" section has been kept very busy, new people have followed me and, as the email states, Mind asked whether I'd be happy for them to put last night's post on their blog.
Personally, I've received a lot of wonderful support from friends online. It's been disheartening to read some of the comments, for example on Rethink's FB page or directed towards Stan Collymore. These comments have the opposite effect to their intentions: telling us that "it's just a joke", we "need to get over ourselves"; "you absolute nutjob"; "the world has officially went [sic] PC mad" simply proves that stigma is real, prejudice against people with mental illness is everywhere and we need to carry on fighting these incidents when they arise.

Some people have criticised the charities involved in the debate for fighting something "trivial" when there are so many other mental health scandals that need attention. I think that this misses the point: there are very few MH stories that make it onto the news. And this one has. Therefore Mind, Rethink, TimetoChange, etc., had a duty to get their voices heard. And the wonderful response to the #mentalpatient photos that have been shared on Twitter throughout the day has been an inspiring counterpoint to the outdated stereotype. 

On Monday, my therapist was commenting on how I can usually find humour even in bleak situations. The book I've written about anorexia apparently manages to make people laugh as well as cry. So I feel that my response to that costume had nothing to do with me not having a sense of humour. The charities haven't lost their sense of humour. The thousands of people complaining on Twitter aren't devoid of humour. The truth is that the costume isn't funny. Because, as we all know, the comedians who get the most laughs use observational humour, i.e. comedy based in truth. 

Given that the blood-dripping, straitjacket wearing, cleaver-wielding "mental patient" has only ever existed in bad horror films, it's fair to say that only characters in bad horror films have the association of this stereotype with truth to find it funny.

Wednesday, September 25, 2013

Fighting stigma

Tonight, I saw that Asda were selling this:



Like many others, I tweeted about it and within a few hours, Asda had removed the product from its website. This is a good step. But I'm concerned that the product made it to the website in the first place and have emailed the Asda CEO to express my concerns.

"Dear Mr Clarke,

Like many others, I have been astonished, appalled and offended by the "Mental Patient" Halloween costume on sale via your website. 
I have attached a screenshot and am relieved to see that the link to the costume no longer functions (http://direct.asda.com/george/men/fancy-dress/zombie-fancy-dress-costume/G004314909,default,pd.html
I tweeted about it and despite having relatively few followers, my tweet was retweeted 32 times within an hour: https://twitter.com/lapsangsusie/status/382964273896370176

I feel that the culture within your business that allowed this costume to be planned, photographed and passed for publication on your website needs to be examined. I'd suggest that you implement some training to ensure that your company no longer perpetuates such damaging and offensive stigma. 

Personally, I have been very upset by this tonight and I've heard of other individuals with mental health conditions who have been pushed into a vulnerable state after seeing photographs of, and links to, this product.

I look forward to hearing from you, hopefully tomorrow, to explain what Asda will be doing to address the failings within its institutional culture and to protect and respect its consumers, colleagues and employees who live with these misunderstood conditions. 

Yours sincerely,"

If I get a response, I'll be sure to update....
And the tweet that I linked for him "Dear , this is what a looks like. End the . It's 2013 not 1813" with this photo



I don't normally post photos of myself on Twitter but it felt like the best way to challenge a damaging image was to share a normalising image. This is me, with one of my beautiful dogs, on a (rare) holiday. My life might often be a struggle (and seeing that there are people who find mental illness funny or frightening hardly helps with that struggle) but really I'm just someone who is as human as you or your neighbour or the checkout assistant at Asda or even Mr Clarke himself.

"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.

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...

Hope for the future?

A new project launched yesterday that could bring some important research to the UK. You can read about it in this article in the Huffington Post by Laura Collins and on Charlotte Bevan's blog
The research is described here and can be summarised thus: 
"NGI represents a global effort to detect genetic variation that contributes to this potentially life-threatening illness. The goal of the research study is to transform our knowledge about the causes of eating disorders to work toward greater understanding and ultimately a cure."
For someone who has been living AN since 1989, the idea that there may "ultimately [be] a cure" is so overwhelming that I want to do all I can to help with the project. I've long wanted to donate my blood to add to the database but currently I can't, because I live in the UK. If Charlotte's Helix can source the funding to get the project over here, those of us who fear that it might be too late for us might at least be able to see hope for other girls, boys, women, men, daughters, mothers, sisters, brothers. And it will be a lasting legacy for the advocacy work that Charlotte Bevan has done so brilliantly since her own family experienced the devastation of AN first hand.


To donate, there is a Virgin Money site that accepts donations via PayPal, cards, etc.

Please do what you can to help. Do what you can to help maintain hope in an illness that works hard to drain it from us.


Tuesday, September 17, 2013

Mixed blessing

Recently, I've received vouchers from both Sainsbury's and Co-operative Food to compensate me for poor quality products I've bought from them. Partly it's a yay! for my assertiveness (if emails count as assertive) in standing up for my "consumer rights". We spend enough money at the supermarkets that it's surely fair enough to expect edible food in return.

On the other hand, I'm aware that this is something that happens when I'm not too well. I want to Fix All The Things.

For example, before my first adult inpatient stay in 1998, not only had I written to the publishers of a children's cookbook (used by my mother at school) to inform them that raw eggs shouldn't be used in recipes intended for young children because of the risks of salmonella, but I had also gone to the trouble of producing a sign for the local museum. I couldn't cope with their own shabby, handwritten, tatty thing blu-tacked to the inside of the door so I had to remedy it by making a replacement and posting it through the door. The museum put up my replacement sign. The publishers said that they would reconsider the recipe when making new versions of the books. So arguably these little crusades of mine were successful.

But it might also be worth asking why I can't allow things to be imperfect in the world. 

Just today I've been trying to sort something out for a BBC World Service radio programme that I follow on Twitter; they were trying to contact someone and I couldn't stop myself from pointing out a more efficient way of so doing. I did manage to stop myself from pointing out the difference between a blog and a blog post to a mental health charity that wanted people to "send your blog to the address!"  "No!" my brain is screaming, "I can't *send my blog* to an email address; I could send you a blog post but *not a blog*". I'm not sure what remnant of self-restraint stopped me from descending into needless pedantry. But I'm glad it did. 

I suppose it would be easy to provide a pat psychoanalysis of this: I'm feeling out of control, whether sub- or consciously, and gaining a feeling of control back from "fixing" things.  

To be honest, this isn't too useful in sorting out how to cope with the feelings. The main thing is that I'm articulating, however quietly, however disjointedly on this blog, that I am feeling out of control. This post even includes the words "when I'm not too well". And from that, someone might extrapolate that I acknowledge that I'm not too well right now. 

Friday, September 13, 2013

Plum jam recipe

I have a million and one topics I'd like to blog about (and a tendency to exaggerate).

However, first priority is to provide a recipe. On Tuesday, I made some plum jam and posted a few photos on Facebook. Those of you who read this blog because of the eating disorder connection will probably understand the album title: "Just don't mention the Minnesota Study". Our garden produces a lot of fruit at this time of year and I seem to need to Preserve All The Things!

Remembering Jackie's question, I took lots of stage-by-stage photos when I made another batch of jam yesterday and will post them here, along with the recipe I came up with, mainly through improvisation caused by necessity, which happened to produce a wonderfully Christmassy jam.

First things first: jam-making is very easy.... but you need Stuff because otherwise you will have a pot full of jam and no way of storing it safely. So before you start chopping fruit or measuring sugar, check that you have 6-8 empty jam jars. These will need to be sterilised, either using the very hottest dishwasher cycle, boiling water or another method (plenty can be found online via google).


You'll also need the paraphernalia for sealing the pots. My favourite method is cellophane circles because I can see that they are safely sealed. These are available to buy, usually in packs with the waxed discs to sit on top of the jam, elastic bands and labels. 
Something I wish I'd bought sooner is the jam funnel. It ensures that the jam gets into the jar without any dripping down the sides. If you don't have a funnel, you'll need to make sure that the drippy bits are cleaned before the jam is stored because otherwise they could make a nice home for mould (ick). 
The other job to do before you start is to put a saucer or small dish in the freezer. This may sound like a bizarre thing to do but it will make it easy to check that your jam has set once it's been cooking on the stove for a while. 

Now we've sorted all of those things out, it's time for ingredients!
1.5 kg plums
750g granulated sugar
250g soft brown sugar
2 tablespoons cinnamon
Juice of half a lemon





Pop them all into your large pot and stir. Then leave for 30 minutes or so, until the juice from the plums has dissolved the sugar. It will look like this, simply from sitting there on its own without being heated:


Next, turn on the hob and heat the plum mixture up to boiling point.  Allow it to boil for about 10 minutes before turning it down to a simmer.
A tip: don't go to sit in another room to watch the start of the Bake-Off while waiting for boiling point to be reached. There is a possibility that you might return to the kitchen to find jammy mess covering the hob....

I won't give a specific time for the simmering because mine took such a vastly different time from other recipes I've read that I think that the time depends on your fruit, your hob and other factors that can't be predicted. Essentially, the shortest time I've seen in a recipe is 30 minutes of simmering. Mine took 1.5-2 hours.


When your jam looks like the photo above, go to the freezer and retrieve your saucer. With a teaspoon, take a blob of jam from the pot, drop it on the frozen saucer and leave it for about a minute. After the minute has passed, prod the blob of jam with your finger. If the jam is ready, it will have formed a "skin" and have a jam-like consistency to the touch. If it's still runny, you need to let it simmer for a while longer. (and you'll probably want to put another saucer in the freezer so that you can test again in a few minutes).


To preserve the jam safely, you will seal hot jam in hot jars. If you have used the dishwasher method, you open the dishwasher door only at the moment when you are ready to bottle the jam. Sterilise your ladle and jam funnel with boiled water from the kettle. Pop the funnel in your first jar and ladle some jam in, stopping about 1cm/half inch from the top of the jar. 
Put a wax disc on top of the jam (wax side down). Wet one side of the cellophane and place the wet side over the jar opening. Seal the cellophane with one or two elastic bands. 
Repeat this process until all of your jam is in all of the jars!

If you are planning to give the jam as gifts, or even to help you remember yourself, write the date that the jam was made on a label. 
The sheer Christmassy-ness of this jam, caused by me accidentally adding more cinnamon that I'd planned and needing to use some soft brown sugar (I didn't have enough granulated sugar in when I made the first batch) gave me the idea of giving jars as Christmas presents, with the name LindyB's Christmas Sugar Plum jam. 

Tuesday, September 03, 2013

The second letter...

... is actually an email.

"Dear Christine and Nicola,

After our meeting in December, I had hopes that the treatment provided by your services would be more satisfactory. Unfortunately, I have to inform you that I will be writing another letter of complaint after my appointment with Dr O's replacement this morning. Dr S was a perfectly pleasant doctor; however, he not only had not read my notes, he had not realised that they were not in the room until I was with him. The notes could not be located so the entire appointment was conducted on the basis of a print-out of the summary written by Dr O in November. As you can imagine, I am very upset and disappointed that an appointment in which I had invested much hope received such inadequate preparation that it was not even worth me making the trip to Addenbrookes.

When I feel a little calmer, I will write a letter to outline exactly what happened. It is a shame that your excellent efficiency in dealing with complaints is not matched by even an averagely good clinical service.

Best wishes,

Linda Bates"

The letter did not materialise because the complaints director asked me not to make another formal complaint. Instead, she (Christine) and Nicola (PALS rep) met with me again.

The complaint was saved until the third appointment in this sequence:

Dear Christine,

Thank you for your letter dated 26th February, which responded to my email of 25th January. You agreed that it was unacceptable that my notes were missing when I was seen on 25th January by another temporary doctor. You explained that my next appointment would be with Dr D and that the move to a new building would enable you  ‘to manage paper records more effectively’. Your letter arrived after I had been offered an appointment with Dr D on 29th March.

However, I received another letter, dated 15th February, from the outpatients department explaining that the existing appointment had ‘been cancelled and replaced by the following:
Clinician Dr Claire D
Date/Time: Monday, 22 March 2010 11:00 AM
Location: Union House, 37 Union Lane, Chesterton, Cambridge CB4 1PR”
Therefore I arrived at Union House at 10.50 am today and notified the receptionist that I had an appointment with Dr D at 11 am. She took my name and asked me to take a seat. Other patients arrived as 11 am approached and, one by one, their names were called by different clinicians. A female doctor, whom I later learned was Dr D, called in a male patient. Soon I was the only patient left in the waiting area. I was already feeling anxious but tried not to overreact because one can’t expect always to be seen on time. However, when 11.25 am came and the waiting room was filled once more with patients awaiting 11.30 am appointments, I approached the desk, showed the receptionist my appointment letter and asked if there was any reason why I was experiencing a long wait. She told me that ‘they are running a bit late’. This explanation did not seem to fit with the timely manner in which every other patient was being called through but I accepted her words and took my seat again. By 11.45 am, most of the other patients in the waiting room had been called through. At 11.50 am, Dr D came out and told the woman sitting next to me that she would be with her in a moment but that she ‘just needed to explain something to this lady’. She turned to me and said that an administrative error had occurred, that my appointment letter showed an incorrect time and I was not on her list until 3.00 pm. She explained that another doctor was willing to see me. Unfortunately, the anxiety of waiting for an hour without knowing what was happening meant that I was very distressed by this point and I was not willing to wait further to see a man whom I did not know. I therefore left the building in tears and feeling incredibly anxious and panicky.

I now do not know when or whether I will receive another appointment and it is very hard for me to trust that any letter I receive in future will be giving me correct information. I also am struggling to understand why staff (whether receptionist or clinicians) did not notify me of the error in my appointment letter either when I registered my arrival at 10.50 am or when I approached the receptionist at 11.25 am or at any other point in the hour when I was sitting waiting in reception. As I am sure you are aware, an hour of waiting without understanding the situation caused me a great deal of anxiety and distress. I understand that mistakes are sometimes made in letters; however had I been told straightaway that an error had been made, I could perhaps have organised to come back at 3 pm rather than wasting the entire morning on a fool’s errand.

Please could you clarify whether I will be able to see Dr D on another day and explain to me why my experience of contact with your services has so far been a catalogue of distressing mishaps?"

"I therefore left the building in tears and feeling incredibly anxious and panicky" is a bit of an understatement. When Dr D came out to speak to me, I went into full-blown sobbing panic attack. In the middle of a crowded waiting room. It was horrible. I then sat sobbing the car for an hour. I think I rang my dad and he tried to calm me down so that I was safe enough to drive home. Since this was the bazillionth time he'd had to do this after appointments with CPFT, he travelled down from Bham to accompany me to the next appointment, purely so that I'd have someone with me to help me cope with whatever shit was thrown at me the next time.
In fairness, Dr D herself was awesomesauce when I eventually got to see her. But unfortunately my therapeutic relationship with her came to an abrupt end when she was moved to another area of the trust after my second appointment. 

While I'm at it...

To complete the picture that I began in the Letter to a Medical Professional post last year, I decided to find the other complaint letters I wrote to CPFT during that period.

Ironically, I come across as very articulate and "together" in the letters. In reality, I was a bit of a mess and I'm not sure that sending articulate letters was helpful in getting CPFT to understand how desperately I needed help. Their response to each letter was to arrange meetings and at least, I suppose, they got to see the anxious, weeping mess of a person in my presence in those meetings.

I had a brief moment of concern about whether I should include the names of the medical professionals in this post or edit it. But in the end, my voice (my writing) is all I have and it's not as though my blog is one with a massive following. I have compromised by leaving only the initials of surnames.

Anyway, here is letter 1, which was dated 8th November 2009.

"Dr Tom D,
Medical Director,
Cambridge and Peterborough NHS Foundation Trust,

Dear Dr D,

I write to share my concerns about the poor standard of treatment that I have been offered by various teams within Cambridge and Peterborough NHS Foundation Trust, after receiving many years of excellent care from Birmingham and Solihull Mental Health NHS Foundation Trust. The consultant psychiatrist in the BSMHT Eating Disorders service referred me to your Eating Disorder Service in August 2007 so that I could access regular support in Cambridgeshire, where I now live.

I was not offered an appointment until late October 2007. This assessment was conducted by a clinical psychologist and I was then paired with a counsellor (Gillian T, who has a PhD in psychology but not a clinical psychology doctorate*) for 12 sessions of Cognitive Analytical Therapy. My meetings with Gillian took place from January until August 2008; at one stage, she referred to me as ‘an anorexic with no hope of getting better’. At several points during our meetings, I asked Gillian whether I could access additional support. My specific requests were to see the consultant psychiatrist to have a review and discuss my medication, and to see a dietitian. I was told that these services were not available to me. In addition, Gillian explained that treatment was only available in discrete units so after my 12 sessions I was discharged from the service.

From August 2008 until August 2009, I was supported by my GP. However it has become increasingly clear that I need further treatment and so a referral was made to the community psychiatry team. This resulted in an appointment with Dr Nikolett K, staff grade to Dr Claire D, on 7th October. Dr K was extremely helpful and indicated that she would see me monthly, and that she would liaise with the Eating Disorder service to see whether anything could be arranged with them. She asked me to register with the University Counselling Service so that I could have regular support in the interim. I did this on 9th October and was contacted, via email, by Lisa H, senior counsellor for the service, who asked my permission to speak to Dr K, which I gave. Once Ms H had conversed with Dr K, she emailed to ask me to meet her in person. In this meeting, she explained that the UCS could not give me counselling but that Dr K would be speaking to the Eating Disorder service to ensure that I would get the specialist help that I need. I enclose a copy of this letter for your reference.

I was encouraged by these developments but this turned to disappointment when I rang Dr D’s secretary to ask why I had not received a letter for my next appointment. The secretary told me that Dr had left the service. Instead I was offered an appointment with a locum, Dr O, on Friday 6th November. I attended this appointment and it was a very unsatisfactory experience. It appeared that Dr O had not read my notes before meeting me; at one stage he asked how old I was, which either indicates a failure to read basic details or that he believes me to be insufficiently compus mentis to retain such information. I was forced to reiterate all the treatment history and aetiology of my illness that I had discussed so productively with Dr K. In contrast, Dr O appeared to be taking me through the standard lists of diagnostic questioning without tailoring it to my specific circumstances. Like Lisa H, he was labouring under the misapprehension that I had discharged myself from the Eating Disorder service; I was, in fact, told by Gillian T in August 2008 that treatment was offered in discrete units and that my unit had come to an end. Once he learned that I am happy to re-engage with the ED team, he said that he would write a referral letter. Disappointingly, the contact with the ED team that Lisa H believed Dr K would make seems not to have happened and a letter from a community dietitian, which delineates my current difficulties and that I entrusted to Dr K, has been lost. Furthermore, while Dr K had indicated that I could remain a patient of the community team while receiving specialist Eating Disorder treatment, Dr O told me that his remit with me would be over once he had referred me.


All of these circumstances have combined to leave me with very little confidence that I will receive any help from your Trust. I have previously defended the NHS to friends based on the exceedingly good treatment available during my time under the care of Dr R in Birmingham; now though I feel very let down by the services on offer to me and wish to make sure that this catalogue of problems comes to the notice of senior figures within CPFT. I hope that my bad experiences may, at least, contribute to improvements in the consistency of care that you offer to vulnerable people with eating disorders and other mental health difficulties."

On Twitter the other day, I entered into a discussion with some medical professionals over whether notes should be read prior to appointments. My answer is: yes, always. And the experience with Dr O. goes a little way to explain why. The follow-up letter after my next outpatient appointment at the same clinic goes even further!

*reading this back, I can see that this may seem a bit intellectually snobbish of me! But my point is/was that one can obtain a PhD in psychology through research; it does not entail the same level of intensive clinical practice as the clinical psychology doctorates.