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.

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!

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!

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.

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 @asda, this is what a #mentalpatient looks like. End the #stigma. 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.

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.

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. 

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. 

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 26^th February, which responded to my email of 25^th January. You agreed that it was unacceptable that my notes were missing when I was seen on 25^th 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 29^th March.

However, I received another letter, dated 15^th 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 7^th 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 9^th 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 6^th 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.