Thursday, October 17, 2013


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.