Mental Health Services failing…

The Healthcare Commission have released a review today of mental health services in England. It comes as no surprise that they’ve found something like half the clients/patients are getting a “sub-standard” service. It seems to me that this is nothing new. Mental Health charities often release reports that highlight the poor deal that people with mental health problems get. Waiting lists to see a clinical psychologist are horrendously long, and from what I can see, the service is often overworked and under resourced.
This is just the tip of the iceberg if you read the BBC’s “Have Your Say” board on the subject. Some of the comments about poor service are downright scary. Read the corresponding news article here.
Of course more funds are desperately needed, but I shall refrain from commenting on the abysmal way in which I think NHS funding is being used…
Mental Nurse has also written about this from a staff perspective.

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Stigma

Last night, there was a programme on BBC2 (second in a series of two) in which Stephen Fry talks candidly about his life with Bipolar Disorder (manic depression). It was a frank and moving account, which looked at many aspects of this complex illness.
He spoke to people – both famous and members of the public – about their experiences, and for his own experience, added a very ‘real life’ persona to the one of creative genius that is so often portrayed in the media. He spoke to a couple whose daughter had taken her own life because she couldn’t deal with her Bipolar. They thanked him for making the programme, and said that hopefully, it would help people understand. Mr Fry said that’s why he was doing it – because the stigma of mental illness was incredible and unnecessary. I can’t remember exactly what he said, but that was the gist of it.
On the BBC website, there is a short interview with him, that asks the same question – why do the programme. Mr Fry responds:

“I’m in a rare and privileged position of being able to help address the whole business of stigma, and why it is that the rest of society finds it so easy to wrinkle their noses, cross over, or block their ears when confronted with an illness of the mind and of the mood – especially when we reach out with such sympathy towards diseases of the liver or other organs that don’t affect who we are and how we feel in quite such devastating complexity.”

In those few eloquent words, Stephen Fry has captured the essence of why I write my blog. Aside from the rare and privileged part. The stigma of mental illness is something that really bothers me. I’ve lost count how many people say to me “but you don’t look mad..” Same with Stephen Fry. People see a successful writer and performer, a Cambridge graduate and Perrier Prize winner. I know I do.

Anniversary

It was September 2000. Things were going well for me – Mr D and I had got married earlier that year, my job was going well, and a couple of months before, I’d had a procedure done on my spine that alleviated about 80% of the pain I’d been getting from a back injury. The only thing that was bothering me was that I was still taking the strong painkillers (dihydrocodeine) for it, and was getting incredibly fed up with the side effects.
A couple of years earlier, a GP had told me (when I said that they weren’t working any more) that I had developed a tolerence for them, and my body was basically better able to flush out what it considered to be ‘poison’ from my system. He told me that to get the same level of pain relief, I’d need to take more of the drug. Although he never wrote that in my notes, and the instructions on the prescription remained the same, the message was very clear. At the time, I was in so much pain that I could not get out of bed by myself, I was walking with a stick and I was constantly having time off work. Terrified of losing my job, I took an extra tablet with each dose. By September 2000, I was taking five times the maximum recommended dose, and feeling no effect whatsoever. I had been taking dihydrocodeine for approximately four years.
The side effects were unpleasant. Profuse sweating, sickly headaches, nausea, and a constant feeling that my head was filled with cotton wool. I made an appointment one day to see my GP after work to make sure it was okay to come off the tablets. The appointment was for 5pm – probably not the best time of day to see a doctor for advice, and I wonder in hindsight whether that had anything to do with his attitude.
The surgery was running late, as it so often does. I was called through, I knocked on the door (as I always do) and went in. The doctor was writing in someone’s notes. I sat down and waited. I felt a bit uncomfortable, as though I was interrupting. He finally confirmed my name, and asked what the problem was. I said, “I’ve been taking dihydrocodeine for a while, and I don’t like the side effects I’m getting.”
“Well don’t take it, then.”
He didn’t even look up from the notes he was writing. He didn’t look at my notes. He didn’t ask what dose I was on. I mentioned that I was worried about what to take if the pain came back, and he wrote me a prescription for tramadol, and said to take that instead. That was it. I thanked him, and left the room.
I’m often aksed why I didn’t probe further, why I didn’t ask about how to come off them, and the answer is that firstly, I think I simply wanted someone to say it was okay to come off them, and secondly, his manner was not conducive to asking more questions. I felt awkward, and just wanted to leave. I still wonder just how much the dihydrocodeine was affecting my thought processes. I made a lot of little decisions then that didn’t make any sense.
I took my last dose on a Friday evening. By Saturday evening I had a headache and felt a bit sick, and by Sunday morning, after a poor night’s sleep, I felt like shit. My first thought was “Great – I’m getting flu or something”. I told you my thought processes were screwed…
Initially, the side effects were just like that – a feeling that I was going to come down with a really stinking cold or flu. My entire body ached like it never had before, my head felt like it was in a vice, and every time I blinked it felt like I was being smacked in the face with a brick. Before long, I succombed to extreme restlessness. I felt exhausted – not being able to sleep – yet I couldn’t sit still. My body felt sensitive, crawling. I’ve felt nothing like it in my life. It took about five days before I realised that it was the withdrawal symptoms that were making me feel like this. I didn’t know what to do. I toyed with the idea of going back to the doctor, but really didn’t see what they could suggest apart from “start taking them again”. I felt like I’d gone too far to do that.
Two weeks or so later, I didn’t feel as bad, although I was incredibly tired. I made an effort and went into town for some fresh air and possibly a bit of retail therapy. I felt weird, and everything seemed different somehow, but put that down to having been ‘unwell’. In Boots the Chemist, I sniffed bubble baths, and tested lip gloss on my hand. Suddenly, I felt awful. My heart pounded and I struggled to breathe properly. Everything was swimming, I was scared – and I had a strange sensation of not really being there. I was fairly near the door where there was a seat. Thinking I was going to pass out, I aimed for it and sat down for a few minutes, leaning forward, watching my hands as they shook. After a while, I felt okay to get up again, and decided to go straight home. Maybe I wasn’t as well as I thought. Maybe I just needed to take it easy for a while.
A few days later, I tried again. I felt bored at home, I needed some distraction. This time, I was in Marks & Spencer when it happened. I was in the womens shoe department, and again thinking I was going to faint, I plonked myself down on the seat in the corner. This time, a member of staff saw me.
“are you alright?”
I shook my head, aware of the feeling in the back of my throat that I was going to cry. She asked me things – could she get me a drink, did I want to go somewhere quiet, that kind of thing. I shook my head each time, and eventually said, “I’m okay now”. I brushed off the “are you sure”s and said I would go home and have a nap. “I haven’t been well, lately” I said, managing a smile. She walked me to the door, and said “take care” as I left. I went home, my journey silent and almost dazed. I went into the house and sat on the sofa feeling weak and utterly shattered. I sat there, stroking the cat as he came up for a cuddle, and I cried.
The rest, as they say, is history…

Books as Therapy, part 2

Borders is considerably bigger than Waterstones. It’s in a retail park, and we chose it because they are open in the evenings. Yesterday, Mr D and I planned to go there and continue the book buying extravaganza that is my therapy. Even before I left the house, I was planning. Waterstones was more of a spur of the moment thing, so I didn’t have time to think about it too much. This time, my mind went through everything – from visualising the layout of the store to deciding what type of book to get.
Downstairs in Borders, as well as a gazillion books, they have an entire corner of the store devoted to magazines, and a Paperchase franchise. Upstairs, there’s a large Starbucks and a generous section devoted to DVD’s. Upstairs is also where the craft books are, and as I’d already decided that I needed a book on crochet (now that I’ve finally gotten the hang of it) that’s where we headed. Of course, Mr D has no interest in crochet or knitting, so he wandered around the DVD section and left me to it.
Crafting books seem to fall into two distinct categories. Ones for absolute beginners that walk you through the basics in baby steps then give you incredibly simple projects to do, or ones which have complex advanced patterns, of which only a few are really nice. The thing about buying crafting books is that you need to bear in mind that the fashionable stuff soon becomes dated. You just need to look at some of the pattern books from the 1980’s to see my point…
“Crafters Corner” has a row of padded stools for people to sit on, which is visible as you go up the stairs. It’s nice to be able to sit there with a few books and leaf through them, but I noticed that someone was already sitting there, so mentally decided not to join her. I ended up sitting on the floor in the other corner, which is something I do when there are no seats. Presently, the lady from the stools leaned over to put a book back. I muttered “sorry” as you do when you may be in someone’s way, and leaned back for her to have more room. She thanked me, and chose a couple of books – crochet books. I smiled. Somehow there was this unspoken craft-person thing between us, and without thinking I said, “This one’s really good” and held up the book I was looking through, Essential Crochet by Erika Knight. Suddenly, that unspoken craft-person link became spoken, and we were talking about books and how hard it is to find good quality yarn. I even told her about a couple of places that I source my yarn locally, which she seemed pleased with.
Maybe it was because I was sitting on the floor, maybe it was because it was a subject I love, I don’t know. Maybe it was because I was there to push myself, and this was part of it. My mindset was different, I wasn’t thinking automatically “fuck off and leave me alone”, I was thinking “I have to do this. I need to communicate. I will communicate.
Buying the book was a little different. I’d gone to find Mr D, and contemplated out loud going downstairs to pay by myself. J’s comment about going “just a bit outside my comfort zone” came into my head, and I decided this was the way to do it. I hovered, putting it off, then thought, “sod it, I need to do this now” told Mr D I was off, and headed downstairs.
Towards the bottom of the stairs, I looked over towards the till area. There was someone waiting, but it wasn’t busy. I headed over, pausing to take a different route when my chosen one was blocked (I didn’t want to be in a confrontation situation by having to say “excuse me”, which doesn’t make much sense considering the conversation I’d had upstairs). I got to the till and waited. It was only when the girl beckoned me over and I smiled and said “hello” that I realised I’d been clenching my jaw.
The actual process of paying was very similar to Waterstones. An almost ‘self service’ system of putting my own debit card in the reader, and following the instructions on the lcd display – the only communication from the sales assistant was a “hello” and “would you like your receipt in the bag?”. I’m thinking I need to pay cash next time, just to make them do some work for my therapy…
I looked round, and saw that Mr D had come downstairs, but had hovered on the bottom step so I could see him. It made me feel better, somehow I felt that going upstairs to find him again was a bit more than I wanted to do. At this point, I felt incredibly tired, but also felt like I’d achieved something.
Last night, I went to bed early, and took my crochet book up with me. Although I’d looked through it in the shop, somehow it was like I was looking at it for the first time. I was seeing the pages again, but this time I was taking it in…

Books as Therapy

Not long after my appointment on Thursday, I found myself standing outside Waterstones wondering what the hell I was doing.
I walked in, my anxiety a little higher than usual, knowing I was going to face something that usually made me more anxious. The first thing I did was look for a book I knew I wanted – Tom Reynolds‘ brilliant “Blood Sweat and Tea”. I had been waiting to get it from Amazon, (with something else to qualify for free shipping) but I needed to buy a book for my therapy, and this was going to be it. Tom might be amused to learn that he’s had a little bit of community psychiatric input, there! I found it (in amongst the biographies, not on the 3 for 2 tables as it should be) and asked Mr D if there was anything he wanted so we could take advantage of the 3 for 2 offer. As we both looked around, I found myself inadvertantly looking at the till area. I was already gauging what was going on there. I realised that I’d also been looking around to see how busy it was and whether there was anyone or anything that was going to make my anxiety worse. I was so acutely aware of it, that I suddenly smiled to myself. Sometimes, this is like looking in from the outside…
Mr D chose a book (I can’t even remember what) and I was pleased to see the classics were included in the 3 for 2 offer, so I picked up HG Wells’ “The Time Machine“. Our local Waterstones isn’t very wide, so I instructed Mr D to stand where he was, which was about 18 feet away from the till on the opposite side of the store. He was close enough, but I was doing this on my own. At the till, a young mum with a pushchair was being served (why do mums think that pushchairs don’t take upany room, and park their ‘wheels’ horizontally?) and had a small girl in tow, who was pirouetting round the pole that holds the “please queue here” sign. In a way, I was pleased someone else was being served – it meant that I could do the whole queueing part of this exercise. My focus was on the mum and her kids – I didn’t want to trip the little girl up, nor did I want to be run over by the pushchair. Another assistant beckoned me over to the till, and I went through the motions. Put my books down, got out my purse, watched her scan them and say “that’s £14.98, please”. Handed her my debit card, and obeyed the instruction to put it in the card reader myself. (As an aside here, I wish shops would make their sodding minds up – either take the card from the customer, or all of them become almost self service. It drives me nuts when you hold out your card and they give you this “oh, no – you do it” thing. What happened to customer service?) To be fair on the girl, she was pleasant and smiling, asked if I wanted the receipt in the bag, which I did, and she waited for me to put my purse away, then handed me the bag with a smile.
There. That was easy. Maybe too easy? Maybe I should have done this on Saturday when there’s more likely to be a queue to contend with, and more people. But, as they say, I have to take baby steps. Two things have come to mind while writing this – firstly, I didn’t get flustered when she waited for me to put my purse away. Usually, I can’t organise my bag so that my purse slips down to the bottom, I’ll just stuff it in my pocket or take my goods and sort my purse out later. Secondly, I’m a sod for saving the environment, and always have a roll-up bag with me. For the first time in ages, it never occurred to me to say, “I don’t need a bag, thanks” – and I feel a tad ashamed.
However, Part One of my ‘homework’ is done. Because of the fact that Mr D works during the day and there’s no daytime opportunity to do this again before my next appointment with J, we have decided to wander into Borders book store during the week. It is at a large retail park nearby, and open late in the evenings.
Now all I have to do is think of some more books I want…

Dealing With It

It was only a matter of time before J was going to ask me to do a practical CBT exercise.
For a few weeks, we’ve been dissecting individual places and events, what causes the anxiety, what makes it worse, what helps (safety behaviour) and where I could be in that place to ride out the panic rather than running away. I’d always visualise myself in these places with the thoughts and feelings I usually had. Going into detail has been difficult, partly because I don’t really think about it at the time, (there’s a lot of times I’ve had a panic attack and not even remembered much of what went on) and partly because it’s hard to admit every little detail. It’s validating the fear, making it more real.
So far, J and I have come up with a list of places with scores between 0 (completely calm) and 100 (full blown panic). Most of these places are shops, and although I said “cinema” and “going out for a drink” I don’t think they count because they happen so infrequently. The last time I went to the cinema was when “Harry Potter and the Goblet of Fire” was out… We picked a choice place, somewhere halfway along the list so it wasn’t too easy and wasn’t going to be the exotic pet store where the tarantulas live. ‘Scuse me..
*throws up a bit*
I hate spiders.. Anyway, the place we chose was Waterstones. I’d already figured that my anxiety is less in there because of my love of books, and if I get anxious I know there is usually a seat nearby where I can flick through a knitting or photography book to distract myself. I guess there is the possibility that this knowledge means that my anxiety is lessened before I even get there. Plus there’s the benefit of a bookshop actually selling lots of things that I really want, rather than popping into Sainsbury’s for a pint of milk.
J asked me what part of the store would make me more anxious. This was easy – either standing by the front door, or waiting in a queue at the till. We looked in more detail at what I’m like waiting at the till to be served. He asked me about my behaviour – what’s going through my mind, what am I doing, where am I looking – that sort of thing. At first, I wasn’t sure – some things I do automatically, and some things I’m sure most people do, like check their purse, keep an eye on the till to see if it’s their turn yet. As we talked, I realised I do as much preparation as possible. Not only do I get my purse out, I get my debit card out (or cash, depending on how I’m paying) and I have a tendency to watch the sales person. I try and figure out what mood they’re in – are they chatty or efficient? Are they trying to get customers to fill in stuff or have a catalogue or store card? These things are important, because in my head I have everything in order. I know what will happen, and if I get to the till and they say something that throws me, it really increases the anxiety.
J and I then discussed my safety behaviour. What do I do to take my mind off the anxiety? There wasn’t a huge amount to say here – if my anxiety is high, I often tell myself not to be so silly, and that I’ve done this a thousand times. I try to focus on the task at hand, and not get distracted by anything or anyone. Maybe this is partly why I avoid eye contact with people. I don’t want to end up enganging in some (verbal or nonverbal) diatribe which ultimately would give me too much to think about and deal with at that moment. There’s also the fact that Mr D is rarely too far away. He’s convinced he doesn’t do much – but just knowing he’s around is a huge comfort. My biggest dread is having a panic attack when I’m alone.
What J picked up on is that I’m very negative about the whole thing. I hate my anxiety. I remember clearly what it was like to be ‘normal’ me, and this makes me feel like I die a little bit inside every time I do something ordinary and my stupid disease means that I freak out. The negative rebuke is now automatic, and J suggested that I need to approach it a different way. I can hate my anxiety as much as I want, but I need to accept that right now, it’s okay to feel this way. Hence my new motto:
   “I’m anxious, and I’m dealing with it.”
It looks like some new-age motivational speak, but it is right. I’m accepting the anxiety, rather than fighting it (I have a habit of saying “I’m fine” which Mr D knows means I am anxious) and I am reminding myself that I am doing something positive about it. I need to practice it, though. I guess the way it’s worded is also helpful if the “I’m so stupid” thoughts come into my head. I can say “hey, fucko, back off – I’m dealing with it…”
What J said next made my heart race. “D’you think you could do a practical exercise?”
What J wanted me to do was this. Go to the bookshop and buy a book. Gradually drop my safety behaviours, and get Mr D to back away. This should be done over several times until I go into the shop and buy a book myself.
“When do you think you can start this?” J asked. “How about this afternoon?” I ventured. I always go into town after an appointment to ‘treat’ myself. It’s an unspoken reward for dealing with my shit. This time, I could go and buy a book instead of a cream cake.
This was on Thursday. I have written about my experiences, and shall publish them tomorrow…