24 Hours in Hell: Update

Two Years Later…

It’s almost two years to the day since I suffered this terrible and traumatising experience at the hands of Camden and Islington NHS trust (CANDI), and I thought it was time to provide an update on what’s happened since then.

It took me quite some time to get over my unlawful detention, in fact I still haven’t recovered. I no longer trust authorities, and I certainly don’t trust the medical staff at CANDI, which is a shame as they’re the only ones who are available to treat me. Instead, I pay to see a private counsellor. The cost of one fifty-minute weekly appointment is more than one week’s Employment and Support Allowance, but I have to do what I can to stay alive.

After the unlawful detention, I requested my medical notes. They took over six months to arrive, by which time I was starting to feel better mentally, and just wanted to put the awful trauma behind me. Then I got ill again. Eventually, after a whole host of other terrible treatment by CANDI, I decided I’d had enough and complained about being locked up against my will as well as a number of other issues.

My complaint was upheld. They didn’t have much choice, really, since their own Mental Health Law officers had told them that they were acting unlawfully. I didn’t receive an apology, unless you count a generic one-liner that tags off the end of all their complaint responses. No indication that they understood the severity of what they’d done, or the impact such an experience might have on someone who is already suicidal and vulnerable.

I submitted a complaint to the GMC about the doctor who’d unlawfully detained me, Sophie Gascoigne-Cohen. They didn’t pursue the complaint as they didn’t deem her to be a risk to patients (mental scars being conveniently less visible than physical ones) although they did say that the matter would be reported to her supervisor. The matter of her refusing to give me information to allow me to give my informed consent to stay on the ward, and refusing to record that I was staying under duress, they classed as ‘administrative issues’ – a cynical misunderstanding of facts if ever there was one.

Did I feel a twinge of guilt, reporting a young psychiatrist and potentially damaging her career? No. I felt an overwhelming sense of responsibility to protect other vulnerable patients from a doctor who sat there and refused to let me assert my legal right to leave the ward, despite me asking. And asking. And asking. Who wilfully role roughshod over mental health law and the safeguards put in place to prevent unlawful deprivation of liberty. I felt worried that a young woman, not long out of medical school, could feel the need to assert her authority to the extent that she cynically deprived me of my human rights. If she showed no compunction in doing this to me when I was quite calm and coherent then lord knows what she might be capable of doing to someone who lacked capacity. There are many, many ways mental patients can be abused by authoritarian doctors, and although pursuing this complaint has been stressful and upsetting, the treatment I’ve received at the hands of Camden and Islington shows that we need to continue holding NHS staff to account to prevent the abuse of vulnerable people.

Finally, I spoke to a solicitor. What happened to me was undoubtedly a legal breach, but sadly there’s little or no money in such a claim, and so they weren’t willing to represent me unless I paid for myself. Since the amount of any compensation would be small, I would be putting myself through terrible stress and expense to pursue this any further.

The only thing I have left, really, is to record my account here in the hope that others who have suffered in a similar way might not feel so alone.

Stay strong and keep fighting.

 

 

 

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Goodbye Facebook, It was fun while it lasted

 

A month or so now, I finally cracked something I’d tried and failed many times before – I quit Facebook.

True, it took a traumatic breakup of a friendship to make this happen. But every cloud and all that.

This morning, it being my birthday, I cynically sneaked a peep to see if I got one of those digital balloony greetings things (I didn’t; I forgot that I don’t have my birthday on my profile anymore to avoid the data harvesting that I used to think was me being paranoid…ha ha, thanks Cambridge Analytica).

The thing is, I realised, that for me Facebook has turned from that friend who loved me and made me feel good about yourself, to one who is constantly sniping at me and who you leaves me with that sinking anxiety feeling every time we have coffee. And yet, it’s also that one friend who holds the key to so many others. Breaking off this relationship would be social suicide. Or would it?

Here’s a few things I miss, and those I don’t, about the most enduring of the social networks.

I miss my comedy group. I set this up a year or so ago, and have made some lovely real-life friends through it.

I miss an occasional funny status update from an acquaintance.

I miss being part of the zeitgeist, seeing news and reaction as it happens (OK, perhaps not as instantaneously as on twitter, but Facebook still reacts within minutes or hours). But conversely, I find that without social media, I don’t feel the same pressure to be the first to be aware of every reaction and counter-argument. In fact, I feel slightly more rested, now that I get my news from a couple of trusted sources and can arrive at my own opinion, without considering a host of variables. Old-fashioned perhaps, but I’m 43 today, so maybe it’s time to hang up my placard and start narrowing my mind…

I don’t miss the constant negativity spewed from certain domains within my digital world. I’d not even really noticed this until this morning’s brief scroll. Like, I know (many) straight white men are trash display problematic behaviour but it’s actually a bit demoralising seeing evidence of this dripped before my eyes 1,000 times a day. I have no problem with anyone posting this sort of thing, by the way – I think it’s an important tool in letting off steam and building solidarity. I just hadn’t noticed until now how draining it is when you’re subjected to it constantly.

I don’t miss the endless and meaningless merry-go-round of “you like my post so I’ll like yours”.

I don’t miss being exposed to other people’s shallow and banal shite (in fairness, I don’t have many people like this on my FB, but the algorithm always lets a couple through).

I don’t miss the constant stream of adverts for things that I just looked at a couple of minutes before.

I miss keeping in touch with people, but without Facebook, I’ve realised I’ve more time to focus on the relationships that are important to me, and where the other person also has the same investment to send a text instead.

On balance, I’ve come to realise that what I loved about Facebook (the sense of community and friendship, the personal element, the increased chances to organise politically) have largely gone now, to be replaced by an endless feed of tuppenny “shock” opinion pieces, sniping, vitriolic comment threads and endless commercialism.

All friendships run their course, and I think this is the end for me. I’ll still keep my hand in – Facebook is too intrinsic to my life to duck out completely, and no one would read this bloody blog if I didn’t post it on there. But I will be keeping you at arms length from now on, old friend.

Thanks for the algorithm-fed memories.

 

 

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take your ableism and get in the bin.

Ableist stories and examples

 

CN: talk of suicide, bullying and abuse

Yesterday I was subject to the most gross ableist attack by someone I had thought was a close friend. In her words, she accused me of ‘using my illness to get everything’. She was seething with vitriol, practically spitting the words.

I presume she meant that by having comorbid diagnoses of Bipolar II and BPD, I’m somehow able to swan around my penthouse suite that my oh-so-fortunate disability has ‘won’ me, being attended to by vast swathes of semi naked servants who are wafting me with gold plated fig leaves. When I get bored of swanning, I can go out to my high-powered job that I’ve managed to snag by virtue of being mental, because mental people get all the best jobs, don’t they? Then I can come home to my loving husband, children and stable family life.

No.

Just, no.

I have HAD it with pathetic and nasty jealousies, of oppression one-upmanship and everyone staking claim to some disadvantage more than others. I am sick to the back teeth of having to justify how fucking difficult my life is to people who should know better. Of having to justify the money I live on to people who are able to earn themselves a living in a way that I cannot, as hard as I have tried. Why am I constantly having to demonstrate my illness to people who claim to be allies?

If you have a problem with me, speak to me. We’re not twelve. Or if you don’t want to speak to me, get the hell away. Don’t stick around pretending to be nice, take take taking my emotional energy, telling me I’m so great, all the while seething your festering resentment. It’s childish and deplorable and it’s called gaslighting. If you really think that I get so many advantages because of my physical and mental illnesses I wish to god you could walk in my fucking shoes for a day. Actually, you’d be unlikely to even put them on, since I can’t leave the house alone. So privileged, much advantage.

You can dislike me. You can dislike my behaviour. You can refuse to accept my profuse and multiple apologies for acting like a dick when I’ve been unwell. But know that when you attack me for my disability, that is ableist behaviour. You are exercising your power to attack someone disabled for their disability. If you want to do that, know that you are ableist.

Ableism example

When you attack someone with BPD who already has constant suicidality and a fucking ruptured and fragile sense of self, know that you are knowingly causing harm beyond what a non-disabled person would experience.

When you accuse me of using my illness to bully people and get what I want, know that you’re silencing me from one of the few outlets I have – to speak about my illness, my disability and the structural oppressions I face.

When you say to me that I use my disability to bully people, I hear that you actually don’t believe it’s a disability at all. If you’re not prepared to accept the very few and limited occasions that my illness has made me act like a dick (obviously I’ve acted like a dick on many many other occasions, completely unrelated to any mental health diagnosis), and you’re not prepared to accept my apologies or reparations for that shitty behaviour, then really you should not enter into friendships with disabled people. Because you’re giving us the false impression that you might, you know, actually show some empathy and understanding.

But that’s just me expecting special treatment.

Ableism story

Further reading: this is a nice quick blog about the behaviour of people with BPD.

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Balancing Act

I’ve lost two and a half stone, and I don’t know how to feel. A blog about body positivity and recovery.

 

Content note: this post is about body image, dysmorphia and weight loss.

The current resurgence of the fat- or body- positive movement, or perhaps my raised awareness of what was always there, has left me feeling conflicted.

How do I talk about Body Dysmorphia – when a large part of my hatred towards my body is rooted in my weight – without it sounding negative towards “fat”? It’s not right to keep on about hating my size and shape while other people are working to make being larger just as desirable as the model in the notoriously shitty “beach body” ad.

Beach body

I love the fat-posi movement. They’ve made me realise and confront deeply held prejudices that I never knew were there. This podcast, where comedian Sofie Hagen talks to artist and activist Scottee, made me feel like old issues to do with size, sexuality and identity were finally being dealt with in a new way. I wish they’d been around when I was growing up.

Sofie Hagen and scottee
They look fun to hang out with.

But all that falls to pieces when I try to apply these ideas to myself. Like (I’m guessing) all Western women and some men, my conception of my size, and my feelings towards food, eating and fatness are deeply rooted in feeling and emotion. They’re not something I can rationalise away, no matter how much I cognitively want to.

My problem was that I had got fat, and it made me desperately unhappy, triggering feelings of dysmorphia that had been latent since my teens. I couldn’t look in the mirror, I couldn’t leave the house. Back in July I blogged about how I’d stopped seeing friends due to my appearance, and looking back this period of self-imposed exile lasted months.

From being a pretty stable size UK 10-12 all my life, I began to gain weight uncontrollably. I had no idea why, or what was happening and neither did the doctors (not much change there). However, its no coincidence to me that my sudden and rapid weight gain coincided with the worst ever mixed bipolar episode I’d experienced, and nor is it much surprise that as my symptoms started to recede, my weight dropped.

In the July post, I wrote about my body and my concerns about how I was feeling. I was desperate for someone to talk to about it, but it was strangely hard to get support. Eating disorder services wouldn’t deal with me, because I hadn’t got an eating disorder. Everywhere else I tried referred me back to ED services. I was torn between wondering if what I was feeling was actually just “normal” and how all women felt, or that there was something deeply wrong with me. In the end I got no help regarding how I felt about my changed body, but I did get help on how to stabilise my mood, and consequently my appetite plummeted like a stone. I’m now one of those annoying arseholes who can use the phrase “the weight just dropped off”.

I’m sure in a large part this is down to quitting alcohol, as I was probably getting through my daily calorie allowance in booze alone, and that’s without the crisps that inevitably accompanied it. Mmmmmm, memories of lovely crisps and booze…

Homer drooling

Something else that helped ease the symptoms of my BDD was accidental. Due to a change in domestic set up, I moved to a bedroom without a fixed full-length mirror. Only having to see my entire body when I chose to (which wasn’t often) helped a lot in terms of processing my feelings towards my body. Ultimately, though, my BDD eased as I returned towards my old weight. It’s not gone altogether, as I now direct my hatred to my ageing saggy face.

Up to now I’ve lost fifteen kilos, which Google tells me is two stone five pounds, and I hope to lose more (but then I don’t think there has ever been a moment of my life, at any weight, when I haven’t wanted to be thinner). To return to my opening comments about feeling conflicted, basically by listening to fat-posi people I’ve realised that it’s not really OK to go round shouting “hey look I’ve lost all this weight aren’t I great”, but now I’m not really sure how to talk about it. I know it’s perfectly OK for me to have a personal goal and to reach that, but I don’t know how to talk about this without fetishising thinness, and feeding into the insidious social pressure about our bodies that causes me and millions of other so much pain.

So it doesn’t feel like reaching a goal, or happiness, or victory. Psychologists would no doubt say that I fudged confronting my feelings about my fatter body by losing the weight rather than learning to accept it and be happy. Nasty little right wing neo-liberal shitbaskets might say I got off my fat arse and did something about it. In reality, I can’t claim that I’ve had the mental strength required to follow a diet or eating plan – my appetite has just reduced, and weight loss has been an unsurprising side effect.  In the end, thinner doesn’t feel better, just different.

Which is probably how it should be.

 

 

 

 

 

 

New Year, Old Labour; plus The Curative Powers of Stephen Hawking

I go on a jaunt to Kings Cross to wave my placard for renationalised railways, plus a visit to hospital for some MRIs and cold comfort.

This morning I was down to Kings Cross for 8am to join the local Labour Party rally for renationalisation of the Railways.

It felt good to be actually doing something, and I got surprisingly few filthy looks for bothering people first thing in the morning on their first day back, although one plummy-mouthed shitbag did come over to make the point that he strongly disagreed with us.

No doubt, like the rest of the Tory party, he believes fervently in the profit motive and the private sector as the means to a fairer society. Without that, how on earth would people motivate themselves to work? He didn’t get where he is today by having the nanny state hand him everything on a plate. He did have Nanny to hand him everything on a plate, but that’s beside the point. A free market is the only way to ensure those who work hard reap the rewards. Like him. Like his father. Like his father before him. Without the profit motive, his ancestors might never have acquired their land, their title and their estate. Yes, we must be insane wanting to intervene in the private sector, he said, stepping over the homeless lady. It’s the only fair way.

I hope to be out again soon.

In other news, I’m at the National Hospital for Neurology and Neurosurgery today, getting MRIs on my neck and back. I’m not hopeful for a constructive treatment plan, since last time my consultant told me that my problems are minor compared to the children he sees with brain cancer.

Whilst his argument is undoubtedly logical, I’m a bit disappointed that someone so concerned with the treatment of chronic pain cannot understand that chronic illness is entirely subjective. Perhaps his treatment will entail showing me a picture of Stephen Hawking upon which the pain in my spine will disappear. I’ll let you know.

Happy new year.

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Learning Disability

Is disability performative? As my chronic pain from spinal degeneration progresses, I’m learning that disability is an everyday process of negotiating with the world, and myself.

 

A couple of days ago I intended to post a happy Facebook status – a rare jewel of optimism in a pile of seething malcontent.

Two joyous things had occurred: not only had I managed to get back into my size 12 jeans (from having been to a size 16 back in the summer), but I successfully travelled on the top deck of the bus, which I haven’t done for almost a year due to crap mobility. With two herniated discs, trying to climb stairs on a moving vehicle is about as much fun as having your eyeballs grated, but it was a good day, and I tripped up and down with little problem.

I should take a moment to mention that herniated discs (and back pain in general) are a misunderstood condition. When people say they’ve ‘slipped a disc’ what they usually mean is that the disc is bulging and has momentarily prodded a nerve – its the pain equivalent of the dentist sticking that metal prong down your bad tooth so you leap out of the chair in pain. It’s fucking agony, and feels like the world is ending, but thankfully most bulging discs correct themselves in a couple of months, with physio and gentle movement. However, if you’re unlucky or just a physical wreck like me, the tough outer layer of the disc can split, letting the jelly-like centre poke through (think of discs as squished jelly babies) poking the nerve for ever and ever, giving you an incontinence-inducing shrieking agony at most inopportune moments. Although certain activities are bad for discs, usually the pain is brought on by something quite trivial, like turning round or picking up a penny. Lately the trigger for my evil jelly baby has been that most vigorous of movements – being asleep. I’ve gone to bed mobile and woken at 3am screaming like something from the Exorcist, my back in spasm and completely paralysed.

Jelly babies
They look so innocent.

 

I didn’t go ahead and post the status. The reason is a shitty one – if you’ve known me for a few years you may remember that an anonymous so-called friend tipped off the DWP that in their esteemed opinion, there was nothing wrong with me and I didn’t deserve a penny of their hard-earned taxes, despite the fact that I’d spent my life BD (Before Disability) paying my bloody taxes too and aren’t they supposed to be an insurance policy for when you need them and hey isn’t that why its CALLED NATIONAL INSURANCE THE CLUE IS IN THE NAME you utter fuckbucket. But because they’d seen me commit the unforgivable crime of smiling in a photo on Facebook, or perhaps leaving the house wearing makeup (because no one sees the months on end that I don’t wear makeup, dress, shower or brush my hair, let alone leave the house (actually that’s a lie, my live-in carer sees it but he tries to shield his eyes from the horror), this genius phoned the Grasser’s Benefits Hotline and claimed “There’s nothing wrong with her and she leads a full life”. I mean god forbid someone on benefits should lead a full life, in fact the less fulfilled and happy you are, the more deserving you are, and ideally you’d have £1 deducted from your benefit every time you laugh.

So fast forward to my interview with DWP and bye bye benefits.

So although all that happened three years ago, I didn’t post my happy status, because  it only takes one person (did I say person? I actually mean “cunt”) to see a nice happy status like this and think I’m an evil bus-stair-climbing money-grabbing benefits cheat.

Well, my anonymous grass can rest easy, because my bus-stair-climbing turned out to be a mere freakish twinkle of sunshine in a shitswamp of spinal disintegration, and by the end of yesterday I was in agony.

I was having a long-anticipated night out: firstly to the theatre to see a dramatisation of my favourite book, Oscar Wilde’s Picture of Dorian Gray, then on to a club to see some friends for an annual get together. I’d been quite anxious about the whole endeavour; since I stopped drinking my overall anxiety has reduced loads, but the thought of going out on the piss, without the element of ‘piss’ is pretty scary. I reckoned by going to the theatre beforehand, I wouldn’t be sitting around in a pub getting bloated on my fifth pint of soda water, and by the end of the play we could turn up to the club with it in full swing.

Things did not go to plan.

The play, the performers of which I’m not naming for reasons that will become obvious, was bloody awful. Hard to see how you could take a universally acknowledged work of utter genius and balls it up so spectacularly, but maybe it wasn’t entirely the performer’s fault. There was a mix-up with the start time, so we ended up getting there 45 minutes early, with nowhere to get a drink or even sit. The entire crew and front of house appeared to be the poshest people ever to have lived, which I KNOW is an unfair reason to hate people, but when you’re cold and in pain and Tabitha and Johann are shouting at you loudly and bossily it’s not the best start to the evening.

Things only worsened when we entered the theatre, only to find it wasn’t a theatre, it was a room, and the room was not even a room, it was (or appeared to be modelling itself upon) the interior of a fridge, complete with migraine inducing lights and sub zero air circulation, and the stage was not a stage but an area at the front of the fridge/room. By this point the quality of the performances were largely academic as the whole setup was so bloody uncomfortable that from curtain up (did I say curtain? How silly of me, of course this production had no need for such old fashioned fripperies, someone turned the big lights off)  I was counting down the minutes until the interval.

Now, this blog isn’t really supposed to be able me moaning about going to see a shit play, which is a shame as I do love a diversion, but I actually wanted to write about learning to be disabled, as illustrated by the events of these few days. So, I’d started this tale happily tripping up and down stairs, and headed out for a long awaited night of fun. But here comes the stick in the (mobility scooter) spokes.

As mentioned, the room was cold. Now this shouldn’t be a big deal – myself and the other audience members kept our coats on, which made it tolerable. As I also mentioned, there was no stage, meaning the whole room was on the flat. Shouldn’t be too much of a problem. Unless you have a squished jelly baby disc in your neck, which means that holding your head in that position is akin to having your face and neck trapped in a vice of pain.

By the time Flora announced the interval, not only had I given up on the second half of the play, but also on going to the club to see my mates. Still these two concerns were but nought because my main worry was how on earth to get home. Because my mobility had been generally good in the last week or so, I’d left my crutches at home. But the combination of frozen neck and sitting in crappy chairs for 90 mins meant I could hardly stand. Holding on to my devoted carer, I limped for an Uber but physically getting into the car and getting out at the other end were not fun, never mind wincing at every bump in the road. My much-anticipated first night out in six months ended in bed at 9pm with two tramadol and a Sherlock.

This +
this = a great night.

 

You might be wondering, how is disability learned? Surely it’s just a matter of adapting, and rolling with the (crap) punches? Well, yes and no. When the pain signals switch on their blue lights and do ninety along the highway of hell, you sure as fuck won’t be running any marathons. But disability isn’t as simple as always being one way or always being another. When you have good days, you make plans – it would be a grim old life if you simply took your worst base line of mental or physical anguish and planned the rest of your life accordingly (albeit that seems to be what the DWP would like you to do).But equally, it’s not really feasible if you plan your life as if you’ll always be your best. Especially when you have bipolar disorder – it’s a recipe for burning oneself out.  So learning to be disabled is a delicate tightrope of navigating how to ‘live’ without compromising your physical health through exhaustion, or your mental health through isolation/lack of activity.

As it happened, there was an especially unpleasant sting in the tail to my disastrous night out. I went to sleep in pretty severe neck pain, but said pain was manageable with lovely lovely narcotics. However, around 4am, my lower back decided to come out in sympathy, and for the next four hours I woke myself screaming in pain every ten minutes on the dot, because each time I fell asleep my back relaxed and the disc touched the nerve. (Last time this happened, my housemate insisted we call 111 and they sent us to the hospital, but I learned enough from that experience to know that they can’t do much beyond give you the drugs you’re already on).

So not a good night, all told.

The fallout from this particular episode is that only a month after I was last in hospital with my back pain, I was back again in the same situation – couldn’t move, couldn’t wash myself,couldn’t do much really. Upstairs on the bus fades into a distant memory.

I’d originally felt a fraud when I’d bought a pair of crutches off Amazon. I wondered if I was falsely claiming the badge of disability, when there must be so many others out there who had it so much worse than me. Now, however, I was blessing good old tax evading Amazon Prime and their one day delivery. If it hadn’t been for the crutches, I wouldn’t have been able to go to the toilet, which is pretty much the last bastion of self-reliance.

Things got worse. I was addicted to the tramadol I needed for the pain, and when I tried to kick them I had a week of Renton-style withdrawals. I could now get to the loo, but showering was quite literally a hurdle I couldn’t overcome. The pain had lessened, but any activity triggered it, so I was stuck between a rock and a hard place, knowing that the inactivity was causing my muscles to atrophy and result in more pain.

Plus, for my mental health, I needed to get out. I’m recovering from the worst bout of mental illness I’ve ever had the horror to experience (six days trapped trembling in a flat in Edinburgh too terrified to leave the house spring to mind, not to mention the suicide attempts). My carer has been tirelessly working to help me overcome my agoraphobia, but there’s still a large voice residing within me which, when faced with the option of going out, will forcibly say “NAH”. If I’m trapped in bed due to pain, I’m afraid the outside world will once more recede, and I’ll be left with nothing, except Words With Friends.

I asked my GP about mobility aids, but his view was that wheelchairs are for the lazy! Stiff upper lip! Once you start using a wheelchair your muscles will waste away and you’ll be left in a puddle like a gelatinous blob! (I paraphrase). The logic that my muscles were also wasting away while I was stuck in bed escaped him. I took an executive decision, and purchased what shall hereon in be named The Chariot.

So began my latest lesson in disability. Things I Have Learned so far include:

  • Men will still ogle you with crutches, but a wheelchair is a bridge too far.
  • People on buses will bestow you with patronising yet well-meaning regretful half-smiles. I don’t judge them, I’ve done it myself. Their face says: It’s a shame, and it IS a damn shame. I don’t mind or feel embarrassed about the chariot, any more than I feel embarrassed about my bipolar, they are part of me and I am largely great. But yes kind stranger, life would be easier with improved mobility.
  • At a time when one most needs taxis, they become scarce and valuable mythological beings which one must hunt for using a combination of apps and perching perilously close to the path of an oncoming vehicle. Accessible Ubers are few and far between and the ones in existence lie to you that they are seventeen minutes away then after seventeen minutes they are still sixteen minutes away. Only one in four black cabs stop. I try and meet the driver’s eye, willing him to read my mind which is screaming “You can start the meter before you put the ramp down mate, I’m happy to pay, I’m just cold and want to get home!”
  • Cold. Cold, cold cold. I’d always wondered why wheelchair users sported tartan blankets on their laps – it seemed strange to me. I don’t generally whip out a blanket when I take a trip to the theatre – so why did wheelchair users need one? Was it to disguise their slothful and likely stained jogging bottoms, the uniform of the undeserving and muscle wasting feckless poor, the latent Iain Duncan Smith that lurks within me wondered? No. Amazingly enough, I have discovered like the world’s most ignorant cunt, when one does not use one’s legs THEY GET COLD. I just spent two hours outside at a protest and yearned for a tartan blanket.

So here endeth my first lesson in disability. I expect there’ll be a lot more to come and I hope you will join me for this wild and crazy ride.

 

These Stories Must be Told

The only thing worse than being sexually assaulted is society’s reaction when you speak out.

#metoo

Friends, I am sick. I am shaking and nauseous. I am terrified and angry and conflicted.

It’s time to speak out.

I have been deeply affected by the Weinstein revelations and the subsequent #metoo uprising. As a political activist and Labour party member I’ve been keenly watching the saga of allegations, denials, apologies and dismissals unfolding in Westminster. I’ve followed the editorials, the opinion posts and even ventured into the murky slurry that lurks malignantly in the comments section.

It’s horrible and yet I’m glad its happening. It’s the moment I’ve been waiting for – when I can speak out about my lived reality and be heard. Until yesterday.

Yesterday I spoke to an old friend and former colleague. Way back at the turn of the millennium, we were recruited as rookies to work for one of the country’s largest trade unions. Together we endured the thrilling insanity of working for a union; the long hours, the victories, the drinking and the sex. There was a lot of sex.

I have no problem with sex, in fact I’ve even been known to enjoy it. The issue I have is when sex is used in a power relationship, by men, to subjugate women. Commenting on Weinstein, Emma Thompson described his behaviour as “a system of harassment and belittling and bullying and interference”. It wasn’t just the sex, it was a system of behaviour.

“One of the big problems in the system we have is that there are so many blind      eyes and we can’t keep making the women to whom this happens responsible. They are the ones we have got to speak. Why?” Thompson asked.

Back in the union, the whole world was fucking blind.

Being 25 and idealistic, this realisation took some time to dawn, but dawn it did. The senior colleague who refused to help me because I’d politely asked him to stop calling me ‘love’. The disbelief when I asked the boss to stop referring to me as ‘one of his girls’. The expectation that we would ‘be nice’ to our predominantly male membership base, which included dancing with old men with wandering hands.

Then I was assaulted.

I’m not going to go into it here, because this blog isn’t about the actions of one man on one occasion (or more accurately, several men, on many occasions). It’s about the devastating reality when you reach out to a friend for help thinking they’re an ally, only to find that they’re an enabler.

I didn’t stay long with the union. I couldn’t turn my blind eye to the internal politics and corruption, and I was soon forced out. My friend remained.

I contacted her this week, thinking the moment would be ripe to speak out about my assault and all the blind eyes that were turned 16 years ago. On many occasions she’s told me that the culture is just as toxic as it used to be; I thought she would be pleased that we could finally confront this issue. I no longer work there so have nothing tangible to lose; I could take the bullet and open the door for others could speak out too! Things would finally change.

But she didn’t want that. Whilst her words said she supported me, her tone said anything but. This isn’t the right way to do it, she said. We need to resolve this internally, she said. I don’t want to damage the movement.

I care deeply about the labour movement, but I care even more deeply for women. In these circumstances, one is the victim and one is the aggressor, and given the choice between the two, I know which side I’ll be on.

You probably think I’m being hard on my friend. How can I be a good feminist ally if I blame other women for their lack of power? Of course I have sympathy with this point. But as trade unionists and socialists we profess to believe in collectivism – that ‘together we are stronger’ – and this isn’t always going to be easy. Doing the right thing is fucking hard.

we must take sides

By maintaining the conspiracy of silence my friend is complicit in the abuse she witnesses yet ignores. She even went as far as to urge me to be quiet. “Rants on social media don’t help anyone” she said. My experience of gendered violence is not a rant, I replied, but thanks for letting me know your position.

I realised then that I was alone and that going forward would not be easy. My mental health is fragile and who needs this? If my friend doesn’t care to do anything, why should I put myself through the mill in the hope it benefits future strangers?

I wish, I really wish I could leave the whole issue and consign it to foggy memory, but it’s too late: can open, worms everywhere. It wakes me in the night and eats my soul.

I know my friend is a victim of patriarchal power and I also know she fears for her job, should allegations become public. I’ve spent a horrific day and night wondering what to do. If I speak out, my friend will hate me, the people I name will hate me, and as I know from reading below the line, society will hate me.

But it’s the right thing to do.

I’ve arrived at the painful realisation that people who speak out aren’t lauded as heroes. They’re threatened with rape, vilified and hated by a world that desperately clings to the status quo. But the status quo isn’t working for me or my sisters and something has to change.

With thanks to @Hannahgadsby for the title inspiration, and for helping me arrive at my decision.

 

 

A Chink of Light

Andy and Rita

My dear old mum (RIP) used to have a rule: if I phoned her in a crisis, I had to also remember to let her know once the crisis had passed. It’s a good rule and I’ve tried to bear it in mind ever since.

After a good few months of the worst mental and physical health I’ve ever experienced, I’m feeling a little better. This week I’ve managed to leave the house twice, admittedly once was for medical appointments, but today I actually managed to go out for a purely fun and social event! Stone the crows! I was whacked and in a lot of pain by the time I got home, but it was wonderful to be outside, to see the trees in their end-of-autumn colours, and just to breathe some lovely London pollution. Just to feel normal for a while.

I know there’s no one-size fits all with mental illness, but a few things have really helped me and I may as well share them with you.

Firstly, being able to afford the input of a private psychiatrist really helped me. Although I can’t afford to be treated by him in the long term, just a few sessions really helped me (the beneficial effect no doubt being increased by the frighteningly large sums of money dispensed) because he gave credence to my experience in a way that my NHS practitioner seem to have given up on. He confirmed I was experiencing a bipolar mixed episode and said that I must be facing unimaginable torment. Although his words didn’t take any of it away, it was such a relief to put a name to the beast and feel validated.

The downside was that the only medications available to me were antipsychotics, which have a pretty horrendous side effect profile, or repetitive Transcranial Magnetic Stimulation (rTMS) which costs £12,000 and is unlikely to be effective in the long term. But before we came to medication, the doctor thoroughly audited my life, and recommended this book which is one of the few I’ve come across to deal directly with mixed episodes.

Although the advice the doctor gave me was fairly basic stuff, especially to anyone who’s had years of therapy, it served to motivate me to kick my arse back into gear. Here’s the bottom line of the doc’s advice.

  • Stop drinking. I’ll admit this came as a body blow to someone who is a self-confessed seasoned drinker. I knew that I used alcohol problematically to deal with the crazy way I was feeling, and I was prepared to wave goodbye to that, but I also knew that there were times that I loved drinking and would really miss it. Some people can manage moderate drinking, but being a very all-or-nothing person, I know the best thing for me is to be completely abstinent. I stopped that day and haven’t drunk since, although I will never rule it out. I am resigned to the fact that alcohol will probably be a permanent struggle for me.
  • Give up caffeine. Whaaaaaaaat? Dear sweet lord, is nothing sacred? Apparently not. I quit coffee and my beloved Coke Zero and I can safely say it’s harder to give up than alcohol. Pass the decaf chai latte.
  • Practice sleep hygiene. I’m normally pretty good with this, but in my manic state was waking through the night or very early in the morning. At first I was so overstimulated I had to step away from tech from around 7pm.

With the help of the above – plus a two-week script for Xanax – I managed to bring down my mania within a couple of weeks. However, I was still left with the sticky anxiety and depression that dogs my footsteps.

In desperation, I tried CBD oil. A couple of people had recommended it to me, but I had dismissed it because I was already on so much medication I didn’t want to add anything else into the mix. However, my Xanax was running out and I wanted to come off benzodiazepines, so I got hold of a bottle from Holland and Barrett.  I am a super sceptical person, especially when it comes to unevidenced alternative remedies, but I can only describe the effect as incredible. After about three days, I started to feel far less anxious and actually something resembling ‘normal’. I was able to stop Xanax with no problems. I’d say the CBD oil helped bring my anxiety down from a seven or eight to a two or three. I’ve taken it every day since.

The other thing that has helped me no end is the selfless support and care of my best mate, who moved in a couple of months ago. He’s unfailingly caring and generous with his time and willingness to listen to my daily trials, to take me to my many medical appointments and to motivate me to go out. Not only that, he literally provides me with something to lean on. My back has been particularly bad lately and I’ve had to invest in some crutches, but thankfully I’ve not had to use them yet as I’ve had my friend’s arm to grasp. Having battled with this alone for years, his support means the world to me.

With the help of my excellent MP, I’ve managed to finally get referred away from the personality disorder service to the mood disorders team. My diagnosis remains contested, with yet another psychiatrist disputing the BPD diagnosis last week.

I also managed to get referred to a psychiatrist endocrinologist, who has recommended a trial of hormone therapy. Every doctor I’ve spoken to recently (and there have been MANY) have spoken about how the role of hormones in affective disorders is massively under-researched, and when you consider the role of hormones in PMS it makes sense that an imbalance would cause mood disruption. I strongly suspect this won’t be cracked in my lifetime, but I’m pleased to be giving it a go.

On the physical side, I’ve involved my long suffering and hardworking MP here too. He’s intervened to challenge my neurologist who refused to give me pain-relieving injections in my spine because I’d self-harmed. Still waiting for an update on this (hey, they’ve only had my complaint since June, why rush); it seems likely I’ll get some help eventually, be it the injections or an operation. I suspect it may be some months though. In the meantime, I’m limping around and relying on my wonderful housemate to dress me.

So that’s about it as far as current health developments go…I’m by no means out of the woods yet, but things are a hell of a lot better than they were.

Did I do OK mum?

 

 

My Pregabalin Hell

It was recently ruled that the drug Pregabalin, used for anxiety and pain relief, is to be reclassified a Class C controlled substance. Here is my account of nine years addicted to the prescription drug.

 

This week the Guardian reported that the anxiety drug pregabalin is to be reclassified as a Class C drug. This means it will be considered a controlled substance and no longer available on repeat prescription.

This comes as no surprise to a state-sponsored pregabalin addict like myself.

I have been prescribed pregabalin continuously for over nine years, since the drug was relatively new, and I know the damage it can cause. 

I was originally prescribed the drug for anxiety and found it to be as effective as Valium, but my tolerance to the drug increased and after a slipped disc left me with nerve pain I was placed on the maximum daily dose. After that I found it impossible to quit.

It took me some time to realise that, rather than helping, pregabalin was becoming part of the problem. I realised how heavily addicted I was to the drug when I realised that my anxiety symptoms were not anxiety at all, but in fact withdrawals because I was due my next dose. On the rare occasions I found myself without the drug I experienced withdrawal symptoms many times more horrific than withdrawal from benzodiazapines and opiates – I can only describe the level of terror like being buried alive. I have broken down in my pharmacy screaming because the GP had made an error and left me without the drug. The humiliation of clinging to the pharmacy counter in tears, explaining that you can’t ‘call back later in the day after work’ because you can’t go to work, because you cannot function without the drug. 

pregabalin lyrica withdrawal

I have spoken to my psychiatrists many times to request help with withdrawing from pregabalin but in the early years they were unwilling to accept that it was as addictive as I told them. I found myself researching ‘pregabalin addiction’ and finding little in the way of research papers, but reams of anecdotal evidence. Yet again, it seems, a licence was granted for a drug without studies as to the long-term effects.

My struggle continued, and the NHS started to doubt me less when I explained my addiction. Recently, a nurse who works in substance misuse told me pregabalin addiction is now recognised as a problem, not just as a prescribed substance but recreationally. Pregabalin has become a currency in prisons and was last year linked to 111 deaths.

I needed it, yet hated the hold it had over me. When I spoke to my doctors about reduction there was the ever-present argument not to change my drugs and risk upsetting my mental state. Furthermore, the NICE guidelines for quitting the drug suggested it should be tapered over a week, when I knew such a rapid reduction would be impossible unless they locked me up as an inpatient – which I even put forward as an option. 

I eventually managed, with the help of a supportive psychiatric team, to reduce my dose over the course of six months, but even by doing this in small increments I suffered suicidal impulses – and actually tried to commit suicide one one occasion. In the end my psychiatric nurse told me to stop trying it as it was causing too much risk. 

I’ve also taken massive overdoses of pregabalin mixed with my many other medications to attempt suicide. On being admitted to hospital, the psychiatrist asked how I was feeling. I replied “I feel fine – I’ve just taken a fuckton of drugs”. Sitting in a windowless room in A&E having tried to end my life I literally felt like I was floating on a lovely cloud. I can understand why pregabalin is used recreationally. 

Although I know this new classification will make my life hell obtaining my regular prescriptions, having seen the damage it can do I’m in favour of greater regulation. The question I would really like answered, is how the hell do drugs like this get licensed in the first place without long term trials.

Effectively, I have been an unpaid guinea pig for the manufacturer Pfizer so they can line their pockets. The drugs industry has profited from my pain – and it’s about time they were made accountable. 

A Literary Life

I’ve been mentally troubled for a long time and began self harming when I was 13.

My parents referred me to the Children’s mental health service in Sheffield, but despite the psychiatrist telling me I should be admitted to their adolescent unit nothing ever happened. I’m not sure if the referral got lost or my parents quashed it.

I was started on antidepressants at 15 and have been on and off them since. But this blog isn’t about medication, or psychiatry. It’s a journey of my mental illness through the books I’ve been recommended over the years.

My periods of depression  became really noticeable when I began work in about 1995, and after revealing my concerns my GP recommended Overcoming Low Self Esteem, by Melanie Fennell. IMG_6760

It had some useful information but didn’t help with my depression.

A couple of years later I returned to my GP for help. By this time (around 1998) the mania for CBT was sweeping the nation, and I was prescribed six sessions and this workbook:

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In fact, one of my psychologists was so evangelical about CBT that after one hospitalisation she bluntly told me that if I was still ill ‘it was because I wasn’t doing it right’. Not that I had untreated bipolar or anything.

Whatever, the black dog continued to follow me. After a complete breakdown whilst at uni in 2005, I finally received my diagnosis of bipolar, and was given this to read – I would highly recommend, incidentally, both for sufferers and friends and family.

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My (private) psychiatrist was the first person to really treat me as an intelligent equal in our dealings, and as a result he suggested I buy this weighty tome:

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It was pretty pricey as I recall, the flyleaf says $65, but I got a lot out of it. Although it’s written for clinicians, each case study has a ‘takeaway’ summary at the end so you can get the gist. Invaluable for finding different treatment combinations – and if you’re paying a private doctor I would rather be doing the reading on my time than his.

On the subject of bipolar I should also mention this autobiography by Kay Redfield Jamison, who is a clinical psychologist who herself suffers from bipolar. It was one of the first books I read that made me identify with her symptoms and wonder if that was me, too.

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After a few years respite, in 2012 I deteriorated following the death of my mum and the strain of being the sole carer for my grandma. I tried (repeatedly) to commit suicide, and whilst in hospital was seen on a psychiatric ward by a locum doctor. I had never seen her before or since. However, she immediately rubbished my bipolar diagnosis and said I quite obviously had Borderline Personality Disorder. Whilst in a recovery house post-hospital, I read this book, which again I’d recommend:

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It was hard to shift my mindset from believing for such a long time that my mood state was caused by neurological imbalances, to believing that my illness was a series of maladaptive behaviours brought about by childhood trauma.

I didn’t dismiss the diagnosis – I recognised lots of patterns from the book that had played out in my own relationships. My issue with BPD was then, and has always been, a tendency to pathologise normal behaviours. If someone has a stressful day and comes home and has a glass of wine this is normal, but if a BPD sufferer does the same they are ’employing a maladaptive coping strategy’ to deal with their feelings, and should actually go and sit in a field meditating instead. Humph.

There being no NHS treatment for BPD in Sheffield, the hospital recommended this workbook and thusly discharged me, duty of care completely fulfilled:

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It’s not a bad book and I did learn a lot about using ‘healthier’ coping strategies.

When I came to London in 2014 the debate raged on as to if I had bipolar or BPD. I was ‘streamed’ into the BPD service as I was told I couldn’t be treated for both, it was one or the other. I was told that the Personality Disorder service would offer more in the way of therapy whereas the Bipolar team mainly focused on medication. From experience I know that the NHS relies heavily on older, cheaper bipolar meds such as lithium and antipsychotics, which can severely limit normal functioning and have severe side effects. My psychiatrist told me this week that 45% of the bipolar population have type 2 diabetes (compared with around 9% in the general populace).

So, once I was under the Personality Disorders Unit I endured a year’s wait for my therapy – originally planned to be Dialectical Behavioural Therapy as in the workbook above, but eventually, in about 2015, decided to be Schema Focused Therapy. Here’s my reading list for this one:

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Look at that title. Victim blamey somewhat? So, you’ve gone through trauma but CHEER UP you negative Nelly else it’s your own fault you’re still poorly.

My schema therapist was lovely, and I tried hard. I understood that the one of the principles of psychotherapy is that you have to get worse before you get better, but I got worse. And worse. And worse. After about eight months I was a mess, and we decided to call it a day.

I was referred back to the list for Dialectical Behavioural Therapy.

It’s hard to explain what went wrong here except for the fact that my therapist had the empathy of a block of wood. She was impossible to establish any rapport with, and as a result I found it incredibly hard to open up. When I tried to raise this with her I was told that it was her or no-one, and when I complained to her manager, I got nowhere. The following month, I learned they had both left the service to set up together in private practice.

There followed a year without treatment. With rapid cycling of moods, extreme anxiety, agoraphobia (I booked a trip to Edinburgh to the festival and locked myself in my rented flat, never seeing one show), the only thing that kept me going was my substance misuse worker. I’d originally been referred for help with drinking as I was drinking heavily to cope with my moods and this often precipitated a suicide attempt. After about four months of seeing my worker, she said i no longer had a problem, but we carried on seeing each other because she knew I was getting no therapeutic support.

All the good ones leave, and in June 2017 she sadly she went off to work for another trust. My condition deteriorated rapidly. I was self harming, never leaving the house, not even washing, and having flights of mania within all this. I was (and remain) like a butterfly trapped in a lighbulb.

I took the only remaining option and went to see a private psychiatrist. Within less than two minutes of seeing me (and assessing the questionnaires I’d completed in advance) he diagnosed me with mixed affective state bipolar. I was back where I’d begun.

Mixed affective state bipolar is not the same as bipolar one or two, so I was given further reading to try and understand my condition. Today’s book:

IMG_6763

To be frank, whereas I eagerly attacked most of the other books, desperate to understand the hell I was going through, with this one I just feel tired. I feel like I could see 10,000 different psychiatrists and get 10,000 different answers – each one swearing that their predecessor had it utterly wrong.

But for now, it’s what I have.

Hittin’ it, not quittin’ it

Hello again, I’m back after a couple of months of being on medication that dispelled any creative urges, including the capacity to complain when being treated like dirt by mental health services. I suppose it’s a cunning plan on their part, dope you up so you no longer have the faculties to oppose their blatant bullying and discrimination.

I’ll warn you in advance, this is a long post, but it’s worth a skim till the end. 😉

I’m afraid I’ve decided to join the mischief of rats leaving the sinking the Good Ship NHS, and through the kindness of strangers I’ve managed to raise enough for a few months private treatment at least. This blog post is just to let you know that I have no intention of deserting my brothers and sisters still dealing with the nightmares of NHS mental healthcare, I’m still here fighting for you.

And if you think I’m overestimating how awful Camden and Islington’s acute (emergency) mental healthcare is, don’t just take it from me. Here’s there full report on Camden and Islington Foundation Trust.

http://www.cqc.org.uk/provider/TAF/inspection-summary#mhcrisis

Now for those of you who can’t be bothered to go into the full report, I’ll summarise. Here are the ratings the Care Quality Commission uses:

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Camden and Islington Foundation Trust as a whole have been awarded a rating of “requires improvement”. The report details their findings in full.

Now, the bit that those poorliest are on the sharp end of, is the Acute Care division. This includes Crisis Teams, Psychiatric Hospitals, Psychiatric Assessment Teams (the ones who decide if you need the nuthouse following a suicide attempt) Recovery or Crisis Houses and short-term day hospitals. I’ve had the joy of being on the receiving end of all of these throughout my time in Camden.

The Care Quality Commission deems Camden and Islington Acute Services to be inadequate, the only area of the trust to receive this worst rating. So those in the most desperate need are receiving the worst level of service in the entire trust.

The CQC found:

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I’m not going to rephrase the report. It speaks for itself. What I will say, though, as a citizen and a taxpayer I have the right to raise issues when I meet with bad practice. This is not my subjective assessment, this is the objective  assessment of the CQC.

I have been unlawfully detained on a ward because the doctor refused to gain my informed consent before admitting me as a voluntary patient. Once I was admitted I was told that if I chose to leave (“voluntarily”) I would be sectioned. I was literally sitting in the kitchen of a psychiatric hospital – their choice of setting, privacy presumably not being a priority – holding my iphone with the information page, published by their own trustshowing them that their own laywers deemed my admission was unlawful. It made no difference. I had my human rights, my dignity and my chances of recovery stripped away by a staff culture that allowed an authoritarian contempt for patients.

At 9am the next morning I phoned Camden and Islington’s lawyers (as named on their own information leaflet), and was immediately summonsed by the hospital manager and informed that I was free to leave.

Of course, I tried to complain. To do so, I needed a copy of my medical notes which I had to obtain via a Subject Access Request under the Data Protection Act. Camden and Islington had 40 days in which to produce these, but informed me that ‘due to backlogs’ they were not meeting this statutory service standard. When I finally received my records, nearly four months had passed and I just wanted to move on.

On another occasion, I attempted suicide and was assessed as needing crisis care. When I arrived at the unit, I was told they would not treat me because I was obtaining medication via a private doctor. This is in direct contravention of  Section 3a of the NHS Constitution which states:

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Of course. I complained (can you see a pattern here?). But my complaint, researched and drafted weeks later when I was less ill, was useless to me on my discharge from hospital; turned away from Daleham Gardens Crisis House, still with bruises on my hands from the catheter and cuts on my arms and legs from my poor tortured mind. They let me walk away. They refused to treat me on the grounds that they could not manage the ‘risk’ of me receiving medication from another provider, but they were prepared to deal with the risk of letting a recently suicidal patient who had been deemed at need of crisis care, walk away to a home where I lived alone with no support or monitoring.

Of course, dear reader, I complained. In this case my complaint, again, heard some months after the event and way too late in the day to give me the help I needed at the time, was upheld. I was thanked for ‘bringing this matter to the attention of the NHS’.

On a recent visit to the same unit, I saw that they had updated their patient information to include the statements that ‘we cannot treat you if you are receiving private healthcare elsewhere’.

So the outcome of my complaint is they have acknowledged that they are in breach of the NHS Constitution, but instead of finding a pragmatic way of dealing with the fact that these days people purchase many things perfectly legally from online pharmacies, from hair restoring medication to the weight loss medication I was taking. Instead of responding to change, Acute Services have chosen to continue to ignore their own ruling bodies and operate as they please.

I wish this was the end of this catalogue of woes. But this years my mental health seriously deteriorated. I found myself accessing Acute/Crisis services more and more often, and eventually asked for a referral to one of the day hospitals, in this case the Jules Thorne day unit on the St Pancras site. I was offered care at Daleham Gardens, but since they had shown so little care for me in the past I had little confidence that I’d get fair treatment there.

I was assessed at Jules Thorne and although I found them a little less than progressive in their attitudes I agreed to give it a go. I was desperate for some help and I knew some services offered by the day unit (like art therapy) really did help.

A few days later I received a call from the person who assessed me who seemed hung up on a comment I had made. I’d asked her if it were possible to email (rather than phone) the service if I couldn’t make it in to the unit. The worker repetitively emphasised that ‘we are not an email service’ and although I understood that, I asked her if she could provide me with some policy or rationalisation for this, because it was something which has been accommodated at every service I’d ever attended in the past. Phone phobia is not uncommon with those with high anxiety.

The woman flat out refused to answer my question. I can only describe the conversation as akin to John Humphrys trying to get an answer out of Boris Johnson, with each of my questions being stonewalled. By this point I was appalled at the way I was being treated. I had briefly sat on the Board of Governors before my health deteriorated and was aware of how staff were supposed to be trained to work with service users in a respectful manner, and to be frank I would have been disgusted at being spoken to like this in a shop, let alone a caring institution.

The conversation reached an impasse, and I asked to speak to a superior. When the call came through, I missed it and so phoned straight back. I spoke the the deputy manager, Mary Hurley, who seemed almost hysterically angry with me. She asked me if I was suicidal and I replied I was, and yet she could not understand why I was upset that a staff member wouldn’t answer my question.

I replied that I could only make a decision about coming to work with the staff at Jules Thorne if I felt I would be treated with respect, and thus far I was concerned I would not be.

It was at this point she really seemed to lose her professionalism. She said (and I took notes, as I could barely believe my ears)  ‘as far as I see your expectations are unrealistic. I can see from your file that you have made complaints in the last about my colleagues’.

I was disbelieving; firstly that copies of complaints of a service that we know – through the CQC no less –  to be inadequate, were being held with my clinical notes. The only reason for this that I can see is that it clearly marks me out as a ‘troublecauser’, and as a result prejudices my care. I was aghast that complaints we being held on my care notes (it’s explicit in the complaints policy that complaining should not influence future care) but Ms Hurley stated that she was no longer willing to discuss the matter, that she had been on the phone far too long and lastly the somewhat daft claim, repeatedly stated, that ‘you’ve phoned here five times this afternoon’ Once, Ms Hurley, once.

In a state of extreme distress, I asked to speak to another manager. I was told that Marian McHugh was based at another site and that the next manager up the line was someone called Lindsey Cole. I asked if I would be called back the same day and Ms Hurley said that was not guaranteed.

At a subsequent meeting some weeks later with Marian McHugh, she confirmed that she was informed that same day of the call with Mary Hurley of my wish to speak to a manager. However, she did not call. So Marian McHugh, service manager of the acute day units, chose to leave a suicidal person for a week with no contact – she could have even spoken to the crisis team and asked them to check up on me, but heard nothing.

She finally called me a full week later. You can imagine how I felt about the service by this point.

Result: Once more, I got no care. I’ve been too ill to complain, but as I recover, I shall raise my concerns once more. Sick of getting nowhere with the formal complaints department, I have arranged to speak to my MP Keir Starmer and will copy in that  letter to the MP for Islington, Jeremy Corbyn. I am making attempts to meet with Richard Olszewski, the Camden Council Cabinet Member for Health and Social Care. I will speak to the Care Quality Commission and the Chair of the Board of Governors.

In 2016 the CQC damned Camden and Islington Acute Care with the worst possible rating they could receive, and yet they continue to fail the most vulnerable people in the borough.

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Just in case you’re interested in how Camden and Islington should  be working, why not wade through a copy of their core values:

Our values

Our patients expect the very best levels of service, respect, dignity and compassion and as an organisation we are committed to demonstrating these standards all day, every day. Hundreds of staff and service users worked  together to create a set of values which make sure people who use our services  get the best possible chance of rapid recovery and receive the best care possible.

Our staff are committed to living and breathing our values, and everything we do should reflect them in full.  We also make sure that when we recruit people they demonstrate the right behaviours before joining our Trust. However, if staff don’t live up to our values, let us know – and even better, when we do live up to them tell us how well we have done .  All feedback is shared with relevant staff and teams.

We have six values which ensure we are welcoming, respectful and kind.  Professional in our behaviour. Positive in our outlook. Working as a team C&I is your partner in care and improvement.

Our six values are:  

Welcoming

We aim to use the 3Ms when we welcome you:  “My name is … , My role is … , May I help you?” We will always be friendly and polite, calm and approachable, and ensure we make time for you.  We are accessible and open, helping you to access the right services at the right time so you have the best chance of recovery.

Respectful

We are respectful so you can feel understood and you feel like an individual.  We champion the rights of people with mental health problems.  As well as respecting your dignity and privacy we look out for the dignity and privacy of others, and speak up if it’s compromised.

Kind

We are kind so our patients feel cared for. When we are kind it means we are compassionate, helpful and encouraging.  It means we are patient and sensitive.  We go the extra mile to help and encourage others to do things for themselves.

Professional

By being professional we demonstrate our expertise and knowledge so you feel safe in our care.  It also means we constantly develop our own skills and ensure we and others have had the right training.
It also means we speak up if we see unsafe care, and learn from any mistakes.

Positive

We are positive ensuring we act as a role model and encourage positive attitudes and hope. We enjoy feedback on what we do, involving everyone in any improvements we make. And we deliver a consistent service, based on best available evidence.

Working as a Team

By working as a team we mean we work together so you feel involved.  We listen and communicate with each other, offering solutions to issues.  We look for opportunities and inspire others to achieve more. We listen even if the message is uncomfortable as we always want to do things better.

Our values are designed to drive up the standards of care across our Trust and to assure you of the quality of care and treatment you will receive as you journey to recovery. Our values continue to be embedded throughout our organisation and are part of our continuous drive and commitment to a values-led culture. This work is referred to in our organisation as ‘Changing Lives’.

giphy (3)

 

 

 

 

Two different flavours of shit

Back in March I decided to withdraw from my anti depressant. I’d been on it for around theee years; it no longer seemed to be elevating my mood and I am already on lots of other meds for pain/anxiety/minor ailments so thought it was time to prune away excess medication.

What followed was a period of five weeks of ‘good’ (but for me, ABSOLUTELYFUCKINAMAZINGWONDERFUL) health: normal functioning, I left the house every day, went to the gym, went to Machynlleth comedy festival. I let new people, wrote and started to plan the future

But after that time my mood started cycling rapidly. My anxiety returned. In order to cope with the chaos I self-harmed and became bulimic: both tactics I hadn’t resorted to for a few years. I cried about five times at day at adverts, the kindness of strangers, buzzfeed articles, and the general minutiae of life.  I encountered terrifying hangovers, where my anxiety was so bad I would have chucked myself out of the window to make it stop.

After about ten weeks of this, including a stay in a crisis house, my mate said ‘I think things are worse now you’re off the anti depressant mate’. I reluctantly agreed and restarted it.

Since then, it’s like I’ve been dead inside. My anxiety and agoraphobia have returned with a vengeance; I don’t leave the house for weeks at a time and never without a carer. I’ve socially isolated myself as I can’t bear my friends to see me in this pathetic ungroomed, un-cared-for state.

I’ve gone from having an active, sparky brain, fizzing with ideas, writing thousands of words every day, to someone afraid of opening their computer.

So, it seems I have a choice between CRAZY BANANAS ROLLERCOASTER life that might well end in suicide or d e a d  i n s i d e life propped up by Valium and codeine to get through the endless days.

What should I do?

 

BDD…WT Actual F???????

Content note: this post is about body image, dysmorphia and disordered eating with mentions of self-harm.

So I know I have a diagnosis of bipolar affective disorder II with rapid cycling of mood. I have a further diagnosis of emotionally unstable personality disorder, although I have been diagnosed with one or the other condition based upon the weather than particular day.

(Seriously, during one two-week hospital admission I was flip-flopped between these two diagnoses no less than four times, according to which consultant was on duty. And each consultant was vehement that the other one was completely wrong. So please excuse me if I’m sceptical about what, if any, diagnosis is actually correct).

One of the difficult things that happens when you receive a diagnosis of a serious illness like bipolar or EUPD is that any other symptoms you may be having get subsumed within that diagnosis. So I have Generalised Anxiety Disorder which is not addressed because it’s just viewed as one of the manifestations of my BP/EUPD. I am scared of leaving the house and travelling, to the extent that I probably leave the flat about three days in every seven. This is certainly social anxiety/agoraphobia but again, it’s not treated separately to my bipolar/EUPD.

But today I want to talk about a different set of symptoms. I need your help because I don’t know what is normal and despite doing online research I haven’t found the answers.

The reason I frequently don’t leave the house is because I can’t bear to look in a mirror to apply makeup (and going out makeup-free is an even worse proposition). I am afraid of dressing my fat body, the way my clothes look (unflattering) and feel (tight) and I can’t bear to inflict this image on the world. I can’t dress without looking in a full-length mirror and I don’t want to look at my body. As a result, attempts at getting ready to go out are often aborted, and I will change back into my loose fitting pyjamas that obscure my physical form.

There’s close friends I haven’t seen for months because I’m embarrassed at how big I’ve become, especially my friends who work in a very image-obsessed industry where thinness is highly prized. They may know that this concept is bullshit, but they’re still online with their protruding ribs and thigh gaps.

But actually for the purposes of this blog, size (mine or others) is irrelevant. There is no objective size/state/body shape that would feel OK to me right now. This is all about my own perceptions and feelings.

I’d like to know: is it normal to compare your body size and shape to every single woman you see in public or on TV or in a magazine? If I see someone who I perceive to be the same size as me, I try and guess if others would view their body as revolting. Does everyone do this? I have done this all my life. I know we are all raised in the ‘does my bum look big in this’ culture, but how much comparing is normal? I’ve been on Oxford St today and the amount of comparing with others (everyone seems so skinny) plus trying to ignore my reflection in shop windows was just a nightmare.

What about plastic surgery? Where’s the line between a bit of botox and multiple and regular operations? Some days I want to slice off my fat.

Regarding food, I’ve suffered with bulimia in the past (again, never treated and viewed as a symptom of bipolar) but rarely purge nowadays. I’d say I have a fucked up relationship with food, but probably not a lot more than the next person.

I feel like I need some professional help with this preoccupation with my body, with avoiding mirrors, with feeling hideous. But I don’t know if I’m just suffering with anxiety which is exacerbating the general social pressures on women to look a certain way.

My mental health nurse told me straight out I don’t meet the criteria for Eating Disorder services, and that’s fine – I know many people with EDs and they are much more ill than me. I don’t think an ED (although a feature) is actually the main issue here. I think it’s much more to do with Body Dysmorphia. But I am pretty ignorant about this area of mental health provision. From the little I’ve read on the NHS website, the treatment would be little different to what I’ve already had over the years ad nauseum: CBT plus SSRIs.

If anyone can help, I would be so grateful for your comments and thoughts. Edit: even if these thoughts and feelings don’t affect you, I’d still like to know. If you’d like to comment privately, make that clear and I won’t publish it. Thanks.

 

 

 

A list of shits no longer given

If you read this blog, or even worse, have had the misfortune to meet me in the last few weeks, you’ll know that I am not in the best mood.

I have a washing machine of vitriol churning in my head and a blaze of anger what I formerly assumed was a cold, dead heart.

So I have made some resolutions. Here are some things that I have resolved to no longer do/ignore/allocate any of my precious thought time to.

  • Tits and nipples. We (very nearly) all have them. If you can see mine, and choose to sexualise them, that’s your sweet issue. I realised at the grand old age of 40 that I don’t, and have never needed a bra. The reason I wear a bra (I suspect like a lot of women) is to a) make my breasts a more desirable shape as deemed by decades of media imagery or b) to COVER MY NIPPLES. Why, I find myself wondering? Which imaginary deity deemed that visible nipples were somehow an invitation for unwanted sexual contact or the sign of the sexually promiscuous? If I can see a man’s nipples/moobs through his t-shirt my last thoughts are of sex, believe me. So rule one: fuck your views on my perfectly natural human body.

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  • Smiling at strangers on trains. I am a sociable bean, and also from Yorkshire, so my automatic response upon meeting someone’s eye is to smile at them. This is nice and I don’t want to stop doing it. But I was one the tube yesterday and looked up to catch a man letching at my aforementioned rack. I was literally halfway through my automatic smile when rational thought intervened and I realised that I was smiling at this man because I somehow felt like I owed his unwanted sexual attention a friendly response. So rule number two: from now on, stinkeye for letches. Speaking of letches…

 

  • …those guys who slide into your DMs at quarter to twelve on a Friday night. The kids are in bed, the wife has followed and they are sitting alone, deep into their collection of craft ale. The messages begin innocuously enough, perhaps with a tenuous link to a mutual friend or a shared interest. I used to wonder ‘why are you messaging me? I don’t know you’. But being a nice person, or at least a shadow of one, I would reply. I would engage, because that’s what I was brought up to do; be friendly and polite. The only difference here is this is not a civil exchange such as one you might have with the elderly lady or gent at the bus stop. This is a highly gendered phenomenon, because it relies upon two of the great pillars of patriarchy: men’s entitlement to women’s attention, and women’s obligation to grant them this. It took me a good few months of messaging back and forth with randoms before I saw the pattern emerge: the lateness of night, the alcohol, the fact that it was never, ever women getting in touch at 1am ‘just for a chat’. The crunch came for me when one of these Facebook buddies decided in his drunken state to send me a meme that amounted to ‘show us your tits’. I realised then that these guys wanted neither friendship nor sex, what they wanted was a bit of a diversion, some idle flirtation to bolster their sagging self images. I also realised I was gaining nothing from these transactions, and they were taking up a whole load of emotional energy.  So from then on, rule three: I don’t accept ‘chatty’ DMs from men anymore, instead just telling the sender that I’m happy to be Facebook friends but I don’t chat with people who I haven’t met in real life.

manspreading tories

 

  • Taking up space. I refuse to apologise for occupying my 68kg 160cms volume of space. Take a look at the picture above. the four women in the front row clasp their legs together, cramped into a small amount of space, while the seven men have spread, relaxed legs, occupying as much of their own sweet space as they wish. OK, its a picture of a load of Tories who by their very nature are bound to be a bunch of cunts, but the pattern is repeated everywhere. Theatres, trains, airplane seats. Rule four: without needlessly encroaching upon other’s space, I will take up as much as I need. If that leads to a battle of wills with the fella sitting next to me, so be it. I am more than capable of giving passive aggressive kneeing when required.

 

  • Rule five: I will not apologise for myself. My education (hard fought for – I got a first class degree but it took eleven years of interrupted study including dropping out of Cambridge to get there), skills, vocabulary and what my mate calls ‘grit and determination’ can often be perceived as a threat by people in authority. I was brought up to have an enquiring mind, which goes down like a lead balloon when you’re sitting in a psychiatric ward at 2am asking for the NHS policy on voluntary admissions before you sign anything. Frequently this has brought me to blows with medics who view this as a personal attack and as a result, become upset and defensive. Whilst it is absolutely not my wish to hurt or disrespect another human being, I’m resolute in my belief that professionals need to be impartial and open to questioning and, at times, criticism. It’s really not personal.

 

  • Rule six: I’ll try my best to give love, appreciation, support and credit where it’s due. In a world filled increasingly with dangerous bell ends, I will hold close those dear to me, thank them for their care, seek to make connections with other good people and show empathy and support to those people going through their own hell. I’ll use what little I have in the tank (mainly lying like a lump on the sofa writing blogs or going on Facebook) to support new artists and creatives, to challenge cuntiness, and to bring good people together. I will try.

 

  • I will pace myself. So instead of lying on the sofa feeling overwhelmed by the chores, I will do one thing each time I get up. So I go for a wee, and put a wash on. I water the plants while I boil the kettle. I am aiming for three chores a day, anything else is a bonus. The prospect of unpacking my suitcase from the crisis house is a faraway fantasy. Leaving the house alone still a long way off. But rule seven seems do-able at the moment, which is the best I can hope for.

 

If you have any suggestions for rules for living in this difficult world, or thoughts on mine, I’d love to hear them. I moderate all comments and will happily post critical comments but only if they’re constructive and non-abusive.

Diagnose and Treat…or Discipline and Punish? 

After just a week I decided to leave the recovery house. I’m not better since my admission; I’m worse, but I fear that being in the house was one of the factors in my deterioration.

When I was studying towards my PhD I became acquainted with a chap called Foucault, who had a lot to say about power and its role in modern society. By ‘power’ I’m not referring to the copper-plated buffoons in Westminster, I’m talking about the subtle mechanisms of power that make you lower your voice while visiting a church, or refer to your GP as Dr Smith whilst she calls you by your first name. 

Mental health treatment is a seething morass of such displays of power. To me, each transaction seems to be test in which the person in authority seeks to assert their power. You will receive treatment, but only if you’re humble. 

In crisis and require some diazepam? Turn up to the surgery, head bowed, in jogging bottoms and makeupless (for god’s sake don’t wear lipstick as this is a clinical indicator YOU ARE FINE). Utter your request in hushed tones, explaining you are desperate and you don’t know what will really help. It’s touch and go, but the diazepam genie may just grant your wish. Don’t under any circumstances be articulate. Don’t make your request calmly and confidently. For pity’s sake don’t point out that your consultant psychiatrist (who outranks them in their tinpot kingdom) has left instructions on your notes for you to be given diazepam in such circumstances. Because this is an affront to the power of your GP, and as a result you will be punished by them failing to find the letter supposedly held electronically on your patient records, a claim that they will need to speak to your psychiatrist directly and other such complicating factors. You’ll get your 5mg diazepam, but only after much anguish and a possible invocation of the Human Rights Act.

Such assertions of power – in fact lets call them what they are, micro-aggressions – were no less in evidence when I checked into Drayton Park, the crisis house in my London borough. If you’re not aware – crisis (sometimes optimistically called ‘recovery’) houses are places for people who would otherwise be in psychiatric hospital. I have been in Drayton Park before, and although it was not without its frustrations I found it to be a broadly positive experience. Having said this, I was really, really reluctant to relinquish my liberty and go back there. By the time I referred myself, I was very ill indeed.

I asked my best friend to accompany me to the assessment, partly because my trust in mental health services to treat me fairly and with respect has been irreparably damaged after previous instances outlined elsewhere in this blog, and partly because I’m not good at showing my mental distress. Apart from a very tiny number of occasions when I’ve fully flipped, normally the anguish and turmoil is buried deep inside. I can explain it, by god I can intellectualise it, but I just can’t bloomin’ show it.

Seemingly this makes me a less credible candidate for crisis care, because following my assessment when I was offered a place, I was told that their decision to admit me was borderline because I ‘clearly found it difficult to show my feelings’ as if this somehow makes me less ill than someone running round naked screaming. It’s as if the concept of being high-functioning mentally ill has yet to reach Islington.

I was assigned a wonderful and highly-skilled worker, who unlike me had actually managed to complete her PhD; in a similar field to my own. As well as discussing my health problems and possible solutions, she also sympathised with my feeling of being lost in the mental healthcare system. Despite having a dual diagnosis of Emotionally Unstable Personality Disorder and Bipolar Affective Disorder I’m not deemed ill enough for continuing support, but the drop-in type services which are being offered to me as an alternative are in no way suitable for my needs, because they focus on stuff I’ve covered comprehensively over the years: sleep hygiene, exercise, basic CBT and mindfulness.

Sadly my excellent worker was part time, so on her days off I was assigned an endless stream of other workers with whom I was obliged to have a one to one meeting with each shift. During the week I barely saw the same person twice. The team at Drayton are kind and committed but I found discussing how crap I was feeling depressing rather than helpful, and I dreaded the twice-daily meets. Often, because of my propensity to put on a brave face, I found myself smiling and making small talk in order to just tick the box of attending the session.

However, it was the regime of rules and surveillance that really made my stay untenable. I couldn’t bear the constant scrutiny and invasion of privacy. Strangers coming into your bedroom at midnight to (incorrectly) tell you you’d not taken your medication; being referred to as ‘non-compliant’ for choosing not to take a painkiller if I’m not in pain. 

I didn’t have the freedom to break in half a 5mg tablet of diazepam and take the other half if/when I needed it. It was take the whole pill and feel like a zombie or take nothing at all, and then risk having my script reduced because I wasn’t using it ‘as prescribed’. I’m used to managing my own medication to cope with both my moods and my chronic pain and having this taken away from me made both conditions worse since the rigid system allowed no room for me to alter my levels of meds to meet my needs (despite my psychiatrist being fully supportive of this approach). 

Because of the emphasis upon staff contact, I couldn’t relax, write or take a nap (which I sometimes need to do as my pain meds sedate me) because staff would come and knock on the door every couple of hours. I was constantly on a high state of alert knowing I could soon be interrupted.

One of my workers told me I shouldn’t sit alone in my bedroom, and when I said I didn’t feel well enough to be around other unwell people I was told to ‘sit in the crèche and watch TV’. I don’t watch much TV at home (OK, OK, apart from Ramsay’s Kitchen Nightmares), I’m certainly not going to sit in a playroom and begin now. If anything that’s more bonkers than the situation I’ve just gotten out of. 

Don’t get me wrong, I understand that every one of the rules I’ve complained about above is there for a reason, and the fact remains that Drayton Park remains a wonderful haven that provides help to a lot of people. But one of their core claims is to treat residents as individuals, and this just didn’t seem apparent in my case.

It also transpired that Drayton Park, despite its progressive ideology, is not immune to micro-agressions of power. I told my allocated worker I was leaving, explaining that it was nothing that the house itself had done but that I felt it wasn’t helping me. She was very regretful and kind, and said that a senior member of staff would want to come and discuss my decision with me; I assumed to get some feedback on my leaving and risk assess my departure.

However, in the twenty-five minutes I sat by reception waiting for my medication to be returned to me, no-one spoke to me. One of my key workers walked past me with no words, no eye contact, despite me sitting surrounded by my bags. By having the temerity to make my own decisions, it was clear they weren’t going to pay me the respect of wishing me well or even saying goodbye. Neither of the managers came out to see me, despite me being sat on the other side of their glass panelled office. I gained the strong impression that if I was going to make my own decisions, they weren’t going to bother with me. My kindly worker came to return my medication to me and I was outta there, in more of a mess than when I’d entered the week before.

Something of a Car Crash

A mental health patient explains the frustrations of trying to convince doctors that her illness is biological, rather than caused by a bad night’s sleep, a row with her boyfriend or her menstrual cycle.

The other day I bought a new car. It was a lovely car, but it had a design fault, quite a serious one. Whilst driving along a straight piece of newly-tarmaced road one day, the brakes failed, causing a nasty accident (no onlookers were hurt).

I took the car to a mechanic who confirmed that the brakes were faulty. However, In the weeks following the accident I had to have a series of conversations with the police, safety experts and insurance specialists who were investigating the accident.

The conversations could be summarised like this:

Official: So madam, what do you think caused the accident?

Me: The brakes failed. I have a comprehensive statement from a senior mechanic, confirming that brake failure was the cause.

Official: Yes, but let’s look into this in more detail. Was there perhaps a pothole in the road?

Me: No. The road was newly tarmaced, and in any case, it was the brakes that failed.

Official: I see there are large trees in the area. Leaf build up from overhanging branches can be an attributing factor for car accidents.

Me: It’s the middle of summer, there is no leaf drop. And I think I mentioned, it was the brak-

Official: (interrupting)  It’s currently Ramandan. Fatigue caused by fasting can cause one to lose concentration on the roads…

Me: I’m an atheist. And so is my husband, who was driving the car at the time of the accident.

Official: And how is your relationship with your husband?

Me: IT WAS THE F**KING BRAKES

This is what it’s like trying to explain to health professionals that your mental illness has a biological, rather than a psycho-social, cause.

For the record, I have a dual diagnosis of Bipolar Disorder, which is mainly considered a physical/biological illness, and Borderline Personality Disorder, which is frequently considered to be caused by, and influenced by potholes ooops I mean environmental or social factors. In my experience there is a massive reluctance on the part of the NHS mental healthcare side to accept that sometimes mental illness isn’t attributable to social factors, and is just caused by my brain’s fucked up chemistry.

  1. This website is helpful if you want to know more

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No doubt others will have different experiences.

Catch of the Day

Likely to be a regular feature while I’m in acute mental health services.

Today it went something like this.

Back in the day, when I first developed my spinal problems, I was prescribed large numbers of prescription strength co-codamol. They were handed out in boxes of 100, on repeat prescription, for years, as I detailed in this earlier blog .

Given that the much weaker over-the-counter version of th drug carries a warning that more than three days use may cause addiction, unsurprisingly I became addicted.

Since then I have tried to keep off the strong stuff but still take the over the counter strength daily for the pain.

Because of a history of overdosing, for a long time my GP would only prescribe weekly, so I wouldn’t have a dangerous amount of medication sitting around. It was a hassle but I could see their logic, even thought the combined strength of the seven medications I was on would probably have killed me, even with a week’s supply.

I take eight co-codamol per day, which, maths fans, adds up to 56 tablets.

Eventually my mental health was stable enough that I was returned to monthly scripts, and I received four weeks of everything. Except my co-codamol, which was still given as a box of 56. When I queried this with the GP she said that due to my history they would not prescribe more than one week’s worth for the entire month. I asked for post dated prescriptions and this was refused. This meant that despite paying for my medication on a pre-payment certificate, I had to go to a pharmacy every three days to buy more co-codamol over the counter (and hear the pharmacists warning that ‘more than three days use causes addiction’. You don’t say).

Now I’m in the crisis house, and they will only administer medication that has been prescribed (you’re not allowed to hold your own. In fact I had to smuggle some multivits inside my vagina but that’s another story).

So the GP will not prescribe the correct amount (the fact that I need this drug to treat chronic pain is not in dispute) and the crisis house will not administer over-the-counter co-codamol ‘for more than three days as it says on the packet that they cause addiction’.

So far I have explained this situation to:

The manager who assessed me for the crisis house

The pharmacist at the crisis house who reviewed my medication

The worker who admitted me to the crisis house

and finally, this morning, the member of staff at the crisis house who, when I asked her for my lunchtime meds, disbelieved my concise summary of the situation.

No punchline today. In fact I’m going to go and grovel for one of my Valium and see what difficulties that throws up.

Dry your eyes, mate

I’m ill, which means I need to access mental health services, which in turn makes me more ill. Oh the sweet irony of NHS mental health care.

I write this in my GP’s waiting room having just had an encounter that was almost as unpleasant for the doctor as it was for me.

As ever, whenever I deal with authorities I find myself trapped in some kind of hideous Catch 22 in which the people with the most power have the least intellect.

I turned up for a routine appointment to review my mental health. I explained that things had got worse and please could I have some more diazepam. After a lecture from my somewhat-new-and-inexperienced GP on how addictive it was, I explained that I understood that but my choice was currently to take medication to control how I was feeling, or chuck myself under a bus. I am dealing with the lesser of two evils here.

I also asked for one of my prescriptions to be changed from three times daily to ‘as required’, as I’ve been instructed by the crisis house to which I am hoping to be admitted this afternoon that they can’t administer more medication than prescribed.

There followed the most ludicrous and cyclical conversation, in which the doctor repeatedly told me that she couldn’t give me any more tablets. I explained I did not want any more tablets, I had plenty. I wanted her to change the     prescription from TDS (three times daily) to PRN (as required). She couldn’t give me any more tablets, she repeated. I DON’T NEED ANY MORE TABLETS I repeated.

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No word of a lie, this conversation went round in circles at least four times before she informed me that my psychiatrist would have to agree to this, but she was too busy to contact him today. The crisis house would have to phone the surgery, speak to the duty officer, ask them to phone my psychiatrist (who, as a consultant, is not easy to get hold of at the best of times).

I expressed the view that this was not good patient care, and would likely leave me in a situation of extreme distress with no access to medication for a period of days until contact could be made with the appropriate people.

She refused to budge from this point, so, knowing that I would have to explain this situation to the assessment team at the crisis house, I asked to record her reiterating her position, and turned on my phone.

At this point she left the surgery and did not return. Instead, her senior colleague returned and informed me that she was very upset.

He asked me to stop recording and said he would end the consultation unless I did so, so I agreed I would do so provided he would give me a written account of our consultation to take away with me. On this basis, I quit the record.

He then agreed to contact my psychiatrist today and to phone me and let me know the outcome.

I thanked him. I explained that I was sorry that his colleague was upset but pointed out that I thought it showed skewed priorities that he was asking me to empathise with her.

I was a patient who had presented in the midst of a mental health crisis and has asked for a course of help that would prevent causing me further distress. When that was denied to me I asked for evidence because I knew that I would have to progress this battle with other authorities in the health trust. At no point did I raise my voice or be impolite; what I did do was give a frank account of being unlawfully detained by the trust last year and explained why I felt the need to cover myself from all angles in interaction with mental health services. The other crime I seemingly committed was of having an understanding of my rights and of prescribing guidelines on controlled substances.

 

I can forgive, but forgetting’s the bastard.

Like everyone, bad things have happened in my life. Some have been done to me, and some, I’m ashamed to say, I’ve done to others. Yes, at times in my life I have been a complete cunt.

Years of therapy (man) have helped me move on from childhood shit, from blaming parents for omissions, for the lovers who cheated. There’s a couple of things, however, that I just can’t move on from.

These two betrayals are insidious by the cloak of mystery that surrounds them, because although completely different in nature, these offences have in common that they were carried out by an anonymous aggressor. And no matter how much you try to move on, it still rankles in the wee small hours that someone hates you so very much that they would intentionally hurt you.

The most recent of these occurrences was the absolute charmer who took advantage of the Tories’ ‘shop a scrounger’ anonymous benefit fraud telephone line. Up to then, I had been fortunate to have avoided the perils of ATOS and their heartless and senseless assessments, and had been automatically awarded fairly decent levels of disability benefit. This award was no doubt largely down to a letter from my long-serving psychiatrist who explained that due to my complex, severe and enduring mental health problems I would not only be unable to hold down a job, but (and I have to admit this bit brings me to tears a little) I would ‘never be able to live a normal life’. So, lucky old me with my fucked up brain, at least I got the princely sum of ninety quid a week from the social with which to live like a Queen (in my abnormal life).

However, my nameless adversary knew better than any medical professional. Sitting on the phone, very possibly masturbating with joy, they gave the DWP a full rundown of my appearance, previous married names, height, weight and hair colour. The crux of their analysis, though, was that I am able to leave the house and ‘obviously lead a full life’.

How that phrase rankled my agoraphobic brain. My best mate is my carer and drags me our once every few days, without which I remain inside, often in my pyjamas, sometimes rarely able to shower. God forbid we should put a photo on Facebook of a rare moment of fun, because that obviously means THAT I AM FINE AND DESERVE NOTHING.

Well, dear reader, it’s 1-0 to my nameless Daily Mail reading wanker because my benefits were stopped and now, well I get by in the only way I can. And I can’t pretend that it’s good for my mental health.

My second beef that burns brightly dates way back to university. I studied at Cambridge as a mature student, after a less than illustrious schooling and adolescence. I was aged 29 and I remember the date because it was Burns night, 2005. I attended an all-female college and was invited to the neighbouring mixed-sex college for the Burns night dinner. The booze was flowing and I remember having a silly tiff with one of the male students, who was well known for fancying himself somewhat. Later that night he handed me a drink, and that’s the last thing I remember.

I came to about 14 hours later, having been attended to by paramedics; my friends had seen me become suddenly floppy and completely out of it, and had called an ambulance. The paramedics didn’t do anything except observe me, and lord knows why they didn’t test my blood, but I was subsequently ill for two whole weeks; I couldn’t look at light, I had a blinding headache and was constantly throwing up. I felt like I’d been physically assaulted.

Again, the sense of not knowing is what makes it hard to move on. I have no doubt that someone spiked my drink, but I have no way of knowing who it was, regardless of my suspicions. In the days that followed (because naturally the event had shocked the college; they immediately ran a campaign to raise awareness of drink spiking), several students came up to me independently with suggestions of who the perpetrator could be. For the record, their suspicions matched mine.

This would all be ancient history, an unpleasant anecdote but something that I’d write off as ‘one of those things’ were it not for an unpleasant twist in the tale. The person I suspect assaulted me in this cowardly and pathetic way is still part of my life, and keeps popping up due to mutual friends and interests. I’ve tried blocking on Facebook, and even unfriending people to avoid seeing his image, but he is physically present at places I go to.

There’s nothing I can do. I one thing I refuse to do, is absent myself. No matter how someone chooses to be a bully, their aim is to remove you from their domain. Sometimes just existing in a time and place is a radical act.

 

So these are my confessions. I’m not proud that I can’t forgive, forget and move on from these horrible events. I’d be a better woman if I could. I’d love to hear from anyone who has found that peace.

 

What’s the difference between Ant McPartlin and a civilian? Rehab is not an option for most of us

pills

 

I was sorry to read today that TV presenter Ant MacPartlin was “going into rehab” after admitting a struggle with depression, alcohol misuse and addiction to prescription drugs. 

Although McPartlin is in no way my cup of TV tea, I understand that it must have been incredibly hard to have stayed at the top of his game for so many years in a business that delights binning those who have outlived their light entertainment shelf life. I’ve known enough people in the entertainment industry to know how hard they have to work to keep their heads above water.

I understand that McPartlin’s problems have partly arisen as a result of being left in chronic pain following knee surgery, and as a fellow pain sufferer I can see only too easily how this came about.

Dan Baldwin: Fragile - Private View

I suffered a herniated disc back in 2012, as a result of going running to try and control my bipolar disorder. The running was incredibly effective, but my spine was not in agreement andI ended up having to have surgery for a slipped disc. During this time I was placed on high-strength opiate painkillers, on top of my ordinary psychiatric medication, with the advice to “take them, whether you feel the need to or not” (this advice is based upon the reasonable assumption that if you wait until you are in pain, the muscles around the area will be in spasm and the pain will be worse, whereas if you take the painkillers regularly you are less likely to restrict your movement and cause further problems).

Great, I thought. No problem, I thought. 60mg of codeine per dose was easily enough to convince me of the doctor’s wisdom. After the first dose, in fact, I believed I’d never have any problems again. It wasn’t enough to completely kill my agonising pain, but it was certainly enough to help me not care that I was now bedridden.

I had my op. Post-operatively I was prescribed Tramadol on top of the co-codamol and three other painkillers I was taking. I used one of those old lady pill organisers to ensure I was taking my medication correctly and found I couldn’t shut the lid, so great was the number of tablets inside. I didn’t care. I found I didn’t care about much, until I realised it was a year later, I was two stone heavier and I hadn’t left the house for eighteen months.

By this point, I was a long, long way away from being able to enjoy any of the therapeutic effects of exercise on my mental health. I was terribly depressed. The codeine no longer had the same joyous effect, and so I’d drink to try and replicate the blissful state of blotto. When that didn’t work, I’d take extra co-codamol. I remember phoning NHS Direct (now 111) because I couldn’t breathe, and them advising me to sleep propped up on pillows. They didn’t ask the right questions to discover what I know now, which is that my breathing was suppressed as a result of overdosing on co-codamol and alcohol.

This unhappy state of affairs culminated with me being awoken from a drugged sleep one night by the police banging down the door. I’d told my friend online that I’d taken (as had become my custom every evening) about 20 co-codamol, as well as alcohol. Oh and I’d sliced up my arms for good measure.

I don’t know what Ant’s rock bottom was, but I’d hit mine.

But if there are parallels between our stories up to now, this is where they diverge.

Because the thing is, there is no “rehab” for those of us reliant upon the NHS. I spent a few days on a general NHS ward whilst the drip treated my damaged liver. I went on to spend the next six months being buffeted between home (where I could not cope), psychiatric hospital, where they kept on trying to discharge me because, although i was actively suicidal, I wasn’t mentally ill enough, and various short stay ‘crisis’ houses, which had very strict time limits of a week or so. There was no rehabilitation facility for someone who had become addicted to prescription drugs because they were prescribed those drugs by their GP. It was a matter of going home and sitting it out; or more realistically, going home and taking regular overdoses and being buffeted in and out of crisis care, which amounts to one visit every couple of days to check that the knives are hidden. Not “rehab” by a long chalk.

The Telegraph reported McPartlin to have said about his difficulties:

“I’ve spoken out because I think it’s important that people ask for help if they’re going through a rough time and get the proper treatment to help their recovery.”

I’m really pleased McPartlin has spoken out, but let’s be realistic about what this “proper treatment” amounts to for those of us not wealthy enough to afford The Priory. The NHS does not have these mythical rehab facilities. If we feel sorry for McPartlin, we should extend this pity to the average service user who is struggling through these problems alone.

 

This is how it feels.

Are you one of those folk who ‘don’t really understand’ mental health problems? Pull up a chair, my friend.

IMG_5762I am terribly, terribly sad and nothing is making it go away. I know people say that they can’t really understand what mental health problems are like if they haven’t had them – well please allow me to illustrate my example.

A few years ago, I lost my mum to lung cancer. We were close and I very much looked up to her. I thought her death would be the very worst thing that could ever happen to me, and it was pretty horrific.

The way I feel now is worse. With no reason. No bereavement counselling, no reassurance that I will work through ‘stages’ to recovery, no concerned relatives and certainly no fucking flowers. Just a terrifying feeling of darkness, worthlessness of myself and everything around me.

My mental health nurse has moved on to another job and I won’t get another, because the NHS has no money and they have to focus on the people actively taking overdoses rather than the ones fighting the urge. My Personality Disorder psychiatrist  sees so many chaotically ill people – emaciated, angry, covered in scars and cigarette burns – that he understandably says I’m ‘doing well’. I get where he’s coming from, but it’s cold comfort.

I’m so grateful to my friends for sticking around the bundle of definite un-fun that I am. My best mate tells me this will pass, and I have to listen to him. It’s all I have to hold on to.

Sticking it to The Man(ic)

brent

I know I am currently suffering from hypomania. It’s not pleasant but one of the funnier effects is lack of inhibitions. 

This manifested itself in the pub yesterday afternoon. I’d been trying to enjoy a quiet pint but it was marred by a group of about eight young men in suits, slick haircuts, reeking of Lynx Africa.

They were gathered around a slightly older fellow, all slicked back hair and pin striped shirt, who was ostentatiously holding court. In a loud voice, he was delivering a motivational speech to his acolytes, apparently about what it takes to become a ‘coach’ (of what, I do not know). It will take sacrifices, he said. Your girlfriend won’t understand why you spend so much time at work. Hell, if she doesn’t understand that this is the sacrifice you need to make to bring in the big bucks then maybe you should question if you even need a girlfriend holding you back? 

You need to be hungry, he exhorted them (although I hope they weren’t that hungry because the portion of sweet potato fries I received was measly). You need to be prepared to eat, sleep and shit work, if you want the sweet sweet reward of dollar. On an on he went, while they gawped open mouthed at his increasingly ludicrous proclamations.

In the end I could take no more. I had to leave anyway, so as I passed them on my way out (clutching a bulging Primark bag, which I’m sure added to my air of gravitas) I interrupted the Alpha and addressed myself to the group.

“Excuse me, I’ve been listening to everything you’ve been saying from over there, as this gentleman’s voice is quite loud. I just need to let you know that he is talking absolute bollocks. I’m a coach myself (I’m not; I don’t know why I said that) and he – gesturing at the shirt –  is an utter bellend. Have a nice evening”. And I sashayed from the pub.

Not really sure what it was all about, really. But if I’m going to go publicly and embarrassingly mental then walking up to knob heads and informing them they are talking shite seems quite a productive channel for my energies.

Hospital Fun

My experience of being in the Royal Free hospital following an overdose.

image

Theres not much fun about being in hospital, the exception being that this morning I got the see the Bristol Stool Chart in action.

Otherwise, it’s been a series of SNAFUs, FUBARs and other WWII based acronyms.

From my arrival at 6:45am A&E yesterday morning, my care has been nothing short of Bristol Stool.

Someone turned up at 8am and tried to introduce himself but wouldn’t be specific about why he was there. He was wearing a lanyard from another hospital so I assumed he was on a placement of some sort. He proceeded to sit at the entrance to my bay with his back to me all day. At no point did he mention I was on one-to-one observations (I was only aware of these happening on psychiatric wards) and when I was finally transferred to another ward I shook his hand to say goodbye only for him to say he was coming with me. He pulled up a chair within 50cms of the end of my bed, which felt like an uncomfortable invasion of my space.  I explained I was extremely tired (after a night of overdosing, like durr) and wanted to go to sleep, so would be pulling the curtain round.

No, I was not allowed to do that, he replied. I had to be visible to him at all times.

No way, I said disbelievingly. There was no was I going to sleep with a complete stranger peering over me, especially one I’d only exchanged three words with all day. And where were these “vital” one-to-one observations when he’d dallied off for his lunchbreak earlier on? (there was no replacement).

We continued in much the same vein for a few minutes with me closing the curtain, him opening the curtain, like a really crap game of hide and seek. Eventually I asked to speak to the Duty Psychiatrist. They sent me a Psychiatric Nurse. I asked again, could I see the Duty Psychiatrist. Eventually I got to speak to the duty team and explained that I thought it was completely reasonable to want some privacy from the rest of the ward to go to sleep. Appaz not folks, hospital is the place where you arrive depressed, beaten and exhausted, only to lie in a brightly lit room with a complete stranger staring at you. I believe the NHS could probably have a sideline in teaching the Chinese more elaborate forms of torture.

The Duty Psychiatrist never turned up with what I’d asked for, which was written justification for my denial of right to privacy and a copy of the “hospital policy” where this information was iterated. Instead I found that my carer had changed shift and I got to close my curtain. Result! Victory had been brought about not by application of common sense or our of respect for me as a patient, but by complete inertia on the part of one bank nurse handing over to another and not bothering to let them know I was meant to be on permanent observations.

It would have been a victory, except new Registered Mental Health Nurse didn’t know how to work my drip machine, so I when unplugged it to go to the loo (as I’d been shown to do) and it kept bleeping , she told me it was my fault for a) not holding my arm straight; b) moving and c) not pressing the override button (I did say I’d been told – quite sensibly I thought – not to touch the buttons) but this was the sage advice of the trained professional.

The not-sage outcome was that actually the machine wasn’t drip feeding me, and I’d spent two hours without my medication. Way to go CANDI, you’re really maintaining that reputation for excellence and quality of care!

Things I learned today:

Don’t expect to be treated with respect as a mental health patient;

Don’t expect to be provided with written hospital policies informing you of your rights upon request;

Don’t expect your medication to be administered correctly.

Sadly, my experience went from bad to worse, but thats a tale for another day.

 

 

 

 

 

 

 

 

 

Camden and Islington Refuse Crisis Care to Vulnerable Adult

Recently, I was unfortunate enough to suffer a period of poor mental health. At my wit’s end, I went to my local Crisis House in North Camden.

If you’ve never been in this position, I can tell you I didn’t take the decision lightly. Crisis houses are not fun places to be, and I was scared about being away from my home, with my black fluffy cat and beautiful garden which both give me a lot of comfort.

But I was at the end of my tether.

Having made the decision to go, I was assessed by the crisis team and assessed as in need of a bed, but it was refused to me. Why? Because I take medication prescribed by a non-NHS doctor. That was the sole reason.

Having told me this, they were happy to watch a suicidal woman, who had recently made her will and worked out how to kill herself, walk away into the sunset.

I don’t believe what happened to me was right, fair or lawful. Here’s my complaint letter (some details redacted to preserve anonymity).   

 

To whom it may concern

Complaint regarding:

  • Failure to Perform Assessment in Line with C&I Values
  • Failure to Risk Assess in Line with C&I Policy
  • Refusal of Access to NHS Services

I write regarding my experience yesterday, 8 April 2016, applying for a bed in North Camden Crisis House. I have several concerns about the experience that I will detail below.

I arrived at the crisis house following a period of several weeks of self harm (cutting), constant suicidal ideation, and making plans to hang myself by buying a rope and working out how to carry out this plan. On 28 March I had presented at A&E seeking an admission and was assessed by [doctor’s name], who was prepared to admit me to an acute inpatient ward or crisis house. However, after four hours in A&E I felt unable to sit any longer due to chronic pain and self-discharged, hoping I could use self-management strategies to recover at home.

Unfortunately my illness did not improve in the following days, culminating in my self-referral to the Crisis House. I do not feel my experience with the team was a positive one and I should like you to investigate the following issues.

I do not feel my assessment was carried out in the spirit of C&I “Being Open and Duty of Candour” policy (2015). This policy states:

  • [Service users] will receive a warm welcome throughout the journey to recovery;
  • They, their dignity and their privacy will always be respected;
  • Their care will be founded on compassion and kindness;
  • They will receive high quality, safe care from a highly trained team of professionals; · We work together as a team to ensure they feel involved and offer solutions and choices – ‘no decision about you, without you’;
  • We are positive so they can feel hopeful and begin their journey of recovery knowing we will do our very best. (p.3).

I do not feel I was given a warm welcome during my assessment. The assessing questions were asked in a mechanical way, using jargon. For instance “what would you consider to be your stabilising factor?” – meaning, in layperson’s terms “what support systems/strategies do you have in place to stop you hurting yourself?”.

I appreciate that professionals have to ask a range of standard questions in their assessment but there are ways of doing this to make it feel like a personal, caring interview rather than being asked deeply upsetting questions such as “do you have any thoughts of suicide now” blankly and as if by rote.

I also felt that the initial assessor was judgemental regarding an antidepressant I take which is not on Camden’s formulary. When I told her the name of the drug she said “that’s expensive, isn’t it?, although I didn’t think this comment had any relevance to my informing her of my list of prescribed meds. She went on to say “we don’t prescribe that”, leading me to have to inform her of NICE guidelines on prescription of escitalopram in cases where the patient has had no response to citalopram, and to explain that the decision to give me the more expensive drug had been taken by my psychiatrist/psychologist at the Dartmouth Park Unit, who have overall responsibility for my care. She then asked how long ago had I been on citalopram, again a question which I don’t feel was relevant under the circumstances. I don’t expect to be given an unofficial medication review by a nurse assessing me for a crisis bed when I already have an established care coordinator and psychiatrist in place.

I gave the assessing nurse a full account of all the prescription medication I take, following which she asked me to go home and wait until she had spoken to the team.

I had already been told on the phone that if I passed the assessment I could be immediately admitted, so had brought an overnight suitcase with me. I explained that it would be difficult (not to mention expensive in taxis) for me to go home needlessly as I had been told I could wait at the unit. One of the most severe and exacerbating symptoms of my mental illness is that I struggle to leave the house alone, and so I did not feel that dismissively being told to “go home and wait for our call” was very kind, compassionate or considerate of my personal mental health needs. In fact I felt as if I was being treated as an object rather than a person in crisis with acute mental health needs.

I waited in reception and was shortly seen by a lady who introduced herself as the manager of my assessor. I apologise for the lack of names, but I was in a distressed state – I hope the names of the assessing staff are apparent from your notes.

This nurse asked about one of the prescription medicines I take – liraglutide – which I buy from an online clinic. The clinic is CQC registered and the medication is prescribed by a doctor. I buy it privately as I find it helps immensely with both my bulimia and alcohol consumption, both of which have been a problem for me during past periods of mental ill health.

I found the manner in which the nurse questioned me about this drug to be both patronising and offensive.

Having attended the North Camden Acute Day Unit in the past I had made them aware of my use of this drug and had taken heed of the fact that this was a drug they would not advise me to continue taking. I had been frank that my taking this drug was a calculated risk, and though there were possible side effects that could be detrimental to my mental health, I explained that I had felt much better since starting the drug. The fact that it is used off-licence (its primary use is for treating type 2 diabetes) is not of concern to me, as the majority of the drugs I have taken during my long treatment for mental illness – especially bipolar disorder – are used off-licence. Similarly, I think without exception, all my psychiatric medications have carried warning of side effects of mood swings, urge to self-harm, and suicidal thoughts.

My point is that although I understand my medical professionals warning me against this drug as it is largely an unknown quantity to them (I have never been provided with any explanatory evidence as to risk of harm, simply been told “we would not advise it”), I have taken a calculated risk to continue this drug as I find it helpful with some of my psychiatric symptoms. I should also point out that at 57kg and 160cms the NHS BMI calculator places me in the middle – upper of the “healthy weight” range with a BMI of 22.2 – so I am not displaying any symptoms of being underweight.

To return to the manner of the senior nurse, it is perhaps most illustrative if I recount the conversation to the best of my memory.

N: So you purchased this drug online? [little laugh] We wouldn’t allow it here.

J: It’s prescribed by a doctor

N: Where from?

J: An online clinic. The doctor reviews your information and issues the prescription.

N: But they wouldn’t have seen you. We wouldn’t allow that here. We don’t even allow over the counter drugs like paracetamol here.

J: But if someone needed to take paracetamol, it would be administered? I’m quite happy for you to hold the drug – it needs to be kept in a fridge anyway – and administer it.

N: We wouldn’t allow that in an inpatient setting

  • Note: It’s my understanding that a crisis house is not an inpatient setting

J: Where is it in NHS policy that drugs obtained on private prescription are not allowed?

N: It’s a local policy…we do it case by case. Your boyfriend could take the drug home.

  • Note – I have no idea of the risk of stopping this medication suddenly, but I do know that is generally not advised

J: The staff at the [Acute Day Unit] know I take this drug and have done for some months.

At this point the nurse went to consult with [doctor’s name], leaving me once more in the waiting room. By this point I was quite distraught.

As [doctor’s name] was not available, the nurse spoke to one of the doctors on duty in the ADU who confirmed that they were aware I take liraglutide but don’t advise it. On this basis, the nurse tells me that they will not offer me the vacant bed.

I have several issues with this stage of the proceedings. Firstly, I don’t feel it is in the spirit of C&I values: ‘no decision about you, without you’ – this decision was taken without regard for any rationale I may have for taking this medication. Rather than taking a legally prescribed drug from a licenced clinic I was made to feel that I was taking an illicit substance purchased from a street corner. I was not given any medical/clinical information as to why the drug was “not advised”.

A more serious concern I have about this decision was that I do not feel the risk assessment was taken in line with C&I policy, or that the outcome was safe.

My assessment at the Crisis House began with an evaluation of my current mental state. The Clinical Risk Assessment and Management Policy Section 8 (p.16) states:

It is important that teams give careful consideration to managing the risk behaviours identified during the assessment. The risk management plan (which should be fully reflected in the care plan) should include a summary of all risks identified, formulations of situations in which identified risks may occur, and actions to be taken by practitioners and the service user in response to a crisis. The risk management plan should include:  

  • Management of the risk of suicide/self-harm
  • Management of the risk of harm to other people
  • Management of the risk of severe neglect
  • Management of the risk of harm from others, historical and current.

Following my initial assessment it was clear that I had suicidal thoughts and plans, as well as plans to self-harm, and these factors presented a significant risk to my wellbeing.

However, I was denied access to a crisis bed on the basis on an unquantified risk, namely a privately prescribed drug. I feel this is counter to Section 9 (pp.17-18) of the same policy that states a commitment to positive risk management (emphasis added).

Positive risk management as part of a carefully constructed plan is a required competence for all mental health practitioners. Positive risk management includes:  

  • working with the service user to identify what is likely to work;
  • paying attention to the views of carers and others around the service user when deciding a plan of action;
  • weighing up the potential benefits and harms of choosing one action over another;
  • being willing to take a decision that involves an element of risk because the potential positive benefits outweigh the risk;
  • being clear to all involved about the potential benefits and the potential risks;
  • developing plans and actions that support the positive potentials and priorities stated by the service user, and minimise the risks to the service user or others;
  • ensuring that the service user, carer and others who might be affected are fully informed of the decision, the reasons for it and the associated plans;
  • using available resources and support to achieve a balance between a focus on achieving the desired outcomes and minimising the potential harmful outcome.

Put simply, I do not feel that the assessing nurse made an adequate risk assessment of the risk to my personal safety, given my precarious mental state, versus the controlled administration of a privately prescribed licenced medication. I feel that refusing me access to a Crisis Bed placed me at significant risk, and I should like this decision to be formally investigated.

This brings me to my final point – being denied access to NHS services. I feel I was denied access to NHS services solely on the basis of taking a privately prescribed drug. The comments made by the senior nurse all suggested that the clinic where I obtained the drug was not a “real” clinic and because the doctor had not seen me in person it could not be a safe or valid assessment. These judgements were made without knowing the details of the prescriber, the official bodies they were registered with or how I was assessed for the drug. Fundamentally, I feel a value judgement was made because I had accessed online private healthcare, and on that basis, NHS services were denied to me.

I believe this to be in direct contravention of the NHS Constitution, Section 3a (p.23)

“You have the right to access NHS services. You will not be refused access on unreasonable grounds”

and specifically the clause

“Access to NHS services is not denied in situations where patients pay for additional private care separately”.

I would like these concerns investigating as a matter of urgency, and with regard to the fact that I remain in a fragile mental state.

Yours sincerely

[Joanne Bloggs]

By email

Sources

http://www.candi.nhs.uk/being-open-and-duty-candour-policy

http://www.nhs.uk/Tools/Pages/Healthyweightcalculator.aspx

http://www.candi.nhs.uk/clinical-risk-assessment-and-management

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/474450/NHS_Constitution_Handbook_v2.pdf

24 Hours in Hell

psych ward

 

I hardly even know where to start on what happened over the last 24 hours. After voluntarily admitting myself to a psychiatric ward at Highgate Hospital, I soon realised it was a frightening and unsafe place, with half-naked people screaming, spitting and shouting throughout the whole ward, and staff doing little too stop them. I’ve been on psychiatric wards before I moved to Camden – and yes, there are some extremely ill people in such places – but this was chaos.

I’d arrived at 6pm. I realise there are resourcing issues in the NHS and I realise this was the day of the junior doctors’ strike, but as it happens this ward did not appear understaffed – when I arrived on the ward it had a ratio of 1 staff to 2 patients. What was obvious was a culture of contempt within the staff team for the service and for the patients, with one staff member standing around bragging about how she “couldn’t wait to get out of here in six months” Only one member of staff introduced himself to me. No other staff member smiled at me or said hello. No one told me about meal times, medication rounds (in fact my medication was missed once – the staff seemingly forgot about me – and the other two occasions I had to chase nurses round the ward telling them I needed my meds – there seemed to be no system in place for dispensing meds at regular intervals), no one told me who staff were, I had my valuables removed with no receipt and was told I could not have them back, no one mentioned the role of care plans/keyworkers, who would be my assigned worker for the shift, where I could get a cup of tea, where the fire exits were…it was terrifyingly shambolic. I phoned my boyfriend in distress and he could hardly hear me over the cacophony of noise outside my bedroom.

I was especially afraid that I would not be able to sleep, as the ward had no sense of day or night. On previous wards I’d been on, evening staff had a routine to create a calming atmosphere by dimming the lights, speaking more quietly, and even offering patients a milky drink. On this ward the staff walked around the bedroom corridors shouting to each other with no regard for patients who might be sleeping. The lights were glaringly bright and even though you could switch off your bedroom light, every half hour staff would remotely switch on a light in your room to check on you through the observation window.

At 10pm, unable to deal with the noise and threatening atmosphere, and convinced that being here would not help me get better, I asked for my belongings and tried to leave. The person on the desk, who wore no ID – so I have no idea of their position, be it nurse or support worker – told me I couldn’t leave until I’d seen the doctor. I asked them if, (not having yet seen the doctor) I had been formally admitted to the ward. If I hadn’t, then I wished to leave.

I was not given a clear response. I was told “you need to be seen by the doctor” but when I asked again if I had been admitted (as since I’d been on the ward I’d had no medical, been given no information and in fact nothing except a thorough search of my belongings and the removal of my phone and laptop charger, medication and anything sharp); the official simply repeated, you have been admitted because you are here.

I stood and “queued” at the nurses station for two hours until the doctor finally appeared. During this time I experienced patients climbing on the nurses’ station, spitting in boxes behind the station, constant screaming and shouting and staff doing little to manage, calm or soothe distressed or angry patients.

At midnight I finally saw the doctor with another ward official, who I had asked to be present as a witness. I sat down and  again asked if I had been admitted as a patient to the ward. She replied “that’s what we’re doing now” so I said “well in that case, I don’t want to be admitted and would like to leave, please.” I explained that although I was very depressed and anxious the atmosphere on the ward was in no way therapeutic and was exacerbating my symptoms.

The doctor was adamant that I could not leave until she had spoken to me. I asked her several times for written information about my rights as a voluntary (“informal”) patient but she refused to give me them “until she’d finished admitting me”, despite me repeatedly saying that I wanted information on my rights before we continued with the process.

At 2.30 am, after the doctor had finished her paperwork she presented me with a factsheet on informal admissions. The first paragraph read “The patient must give informed consent to their admission. They must be informed of the restrictions that will be placed upon them BEFORE they are transported to the hospital ward”. This was my first sight of this information.

I told the doctor I hadn’t given informed consent and that I believed they were unlawfully detaining me. She responded by telling me that there was no way they would release me because it was the middle of the night (despite the fact I’d been trying to leave since 10pm, and my boyfriend, who I’d phoned in distress and asked to come and help me, was waiting outside in a cab). I had a “choice” of remaining as a voluntary patient or she would place me under a section of the mental health act compelling me to stay against my wishes. This section 5(2) of the Mental Health Act allows the hospital to detain you for up to 72 hours, and carries no right of appeal.

I realised I had no choice but to remain “voluntarily”  but asked for it to be noted that I’d made the decision to stay under duress and headed back to my room. There was a patient asleep on the floor in front of the fire exit, and outside my bedroom, two patients were having a party, playing music and singing at the tops of their voices. When I said to the ward nurse “it’s 2.45am, how am I supposed to sleep?” he responded that “he’d ask them to turn it down” but couldn’t do any more than that.

The whole place was threatening and frightening and it was unbelievable to me that they’d place someone whose main presentation is anxiety into such a place.

At 9am the next morning I phone the Borough’s Mental Health legal manager, who is responsible for the Deprivation of Liberty Safeguards which relates to the section of the Human Rights Act that says you have the right not to be unlawfully detained. He informed me that by being threatened with a Section I’d been coerced into staying and that in fact the nurses had no authority to prevent me leaving when I’d originally asked at 10pm.

He phoned and spoke to the consultant who, although she advised me to stay in hospital, judged that I was not “sectionable” and was therefore free to leave.

The whole experience was terrifying and traumatic, and should never have been allowed to happen. Everyone I dealt with that night had a shocking lack of knowledge of, or regard for, patient’s basic human rights.

 

 

 

SaveSave

Lament of the lone (female) drinker

I’m sitting, for the millionth time in a thousand years, in the afternoon, in a pub, on my own.

I’m almost certain I’m the only woman who drinks on her own in pubs at any time of day, let alone before the sun’s over the yardarm, but my personal disregard for both male privilege and convention has meant that I’ve never really cared about breaching this particular social norm.

The thing that gets me is the looks. Not from other groups, because they’re there with their mates and aren’t really that arsed about what other people are up to. No, it’s the looks from the hardened bar-sitters that gets me. Their features thickened with drink, and their age, outfit and demeanour always entirely inappropriate to the pubs’ aspirational “edgy” hipster vibe. They come in because they’ve always come in, and no amount of scotched eggs and slate plates is going to dislodge them.

They sit at the bar so they can drink alone and keep up the pretence of sociability by chatting to the barmaid or (less enthusiastically) barman.

Me tipping up and opting to get pissed alone in the corner whilst catching up with Facebook, is undoubtedly daunting to this dying breed. Except I don’t think they’re a breed that will ever die. While ever alcohol exists, you’ll find the hardened drinkers, escaping from reality on a fluffy pillow of lager.

And maybe one of these days, one of the hardened bar-sitters will be me.

Mental Health Activist Angst

As a mental health service user I’m really passionate about having a say in how my services are run. This isn’t entirely altruistic; I’ve been on the receiving end of enough piss-poor services when I’ve been ill that I have a vested interest in improving them, not just in the hope that others won’t have to bear the burden of dreadful care provision, but in the hope that things will be better next time I embark on the inevitable descent down the rabbit hole of insanity.

I’ve been part of an amazing project that has really made a difference to how staff on psychiatric wards treat (and think about) patients. It was a shining star of good practice where senior medics, NHS execs and service users all worked together with a shared aim of changing a poor organisational culture.

Unfortunately that jewel shone bright in what has otherwise been something of a dunghill of well-meaning but inept professionals with a professed “clarity of vision” but little clue about how to put it into practice for Joe and Joanne Bloggs.

Read on for insights into this glorious world…