The Trouble with Doctors: Part Two - Breaking the GP Barrier

So to summarise the discussion downblog: despite most having had no mental health training whatsoever, GPs are the 'ongoing physicians' for the majority of those living with mental illness. What this means in practice is that the 75% of those suffering with mental illness (half the UK population, incidentally) receive no treatment as a direct result of having been 'bounced back' from access to this treatment by GPs who misunderstand their symptoms. For those who do access treatment at GP level, it is often the case that only the symptoms present at the time of their visit are treated, and then often with inappropriate drugs. So, as happened to me, a bipolar patient might present with symptoms of depression which are treated with an anti-depressant. This induces mania. The patient does not seek help whilst manic as they do not believe that anything is wrong, and very often no intervention is made from other channels (family, friends etc.). So the wider problem goes either misdiagnosed or undiagnosed entirely. The patient then returns to the GP when in, say, a mixed state. The GP interprets this as depression and anxiety, prescribes more anti-depressants along with highly addictive tranquillisers and the cycle begins again, except this time there's the problem of nascent drug dependency to contend with as well. At no point is the patient referred on to a specialist, which would break this cycle. In addition to the ignorance of many GPs, one of the most powerful forces keeping this cycle going is, in my experience and that of many of my peers, the inability of the patient to communicate the extent of their condition. This can be down to a number of factors, for example the catatonia induced by depression, the racing thoughts and self-loathing which come with mixed states and obstruct your ability to articulate yourself; or the shame and self-deception to which you are subject during periods of relative clarity. So whilst the medical profession umms and aahs over whether or not to actually train general practitioners in this fairly important area of medicine, what can we do from our side to overcome this problem of communication and access the treatment we need? It is in this spirit that I present the first of a series of points which helped me along the way to just that. It is not intended to be instructional – if anything it's a wish-list of things I wish I had been told at age 16 – but I do hope it will provide some practical tips on navigating the murky machinations of the mental health system, and a few cheap laughs along the way.

1. Honesty. It's pretty hard to be honest with yourself about what your brain does, and what it induces you to do, when you suffer from a serious mental illness. As I touched on in Part One, not only have you got all that no-fuss-please-we're-British-ness flying around, you also probably don't want to admit to yourself just how weird this shit can get. In addition to all the scary moods, thoughts and voices, chances are you've probably acted on them at some point; done some pretty socially unacceptable things, and some things you're so ashamed of you can barely believe it was you who did them. If you've ever experienced psychosis, you also almost definitely did not believe that your visions and voices were symptoms of mental illness at the time. In retrospect, for a long time I was stuck in limbo somewhere between ignorance of my condition and knowledge that something was awry but lacking the capability and will to stare it in the face. As anyone who has experienced this curious state will know, it is not for nothing that 'limbo' is another word for 'purgatory'. I wanted desperately to be better, but that would have necessitated admitting I was crazy, and I really wanted not to be crazy. Equally, I wanted a diagnosis that would confirm my suspicion that something was indeed rotten in the state of 19, but I was terrified to ask for it, in case my condition and the behaviour to which it gave rise turned out to be simply the result of a series of unsavoury character flaws. 

For me it was a slow journey from this seething mass of contradictions to finally achieving a diagnosis which made sense to me and (so far, fingers crossed) effective treatment for it. The one factor present in every single leap forward, however, has been an increased capacity for honesty with myself and others about my condition and its effects. I believe that the single most helpful thing anyone could have done when I first became seriously ill was to have encouraged me to acknowledge the exact nature of my symptoms and reassure me that, rather than making me a spectacular failure of a human, they simply meant that I had a condition which was manageable. I recently went with my sister, S, to an open meeting of her eating disorder support group where this was the central theme. Overeaters Anonymous (don't be fooled by the name – the group supports all those dealing with compulsive eating, so anorexia, bulimia and compulsive overeating are all represented) is, like its Narcotics and Alcoholics namesakes, a 12-step programme. As such, it is pretty prescriptive in its methods and there are certain elements of the programme which I find difficult to swallow, not least the rule that participants must acknowledge the existence of a 'higher power' and relinquish control of their addiction to it. However, the programme does involve levels of self-interrogation and contingent bravery for which I wholeheartedly salute its members. Step Four, for example, consists of making of a 'moral inventory' in which participants must list all their 'flaws' and all the 'wrongs' they have ever done to anyone as a result of their addiction (in this case an addiction to food and compulsive behaviours around it). In Step 5, they must use this to admit to their higher power, to themselves and to another human being the exact nature of their 'wrongs'. Here again, although I am somewhat uncomfortable with the term 'wrongs' in the context of a severe mental illness, the overall process – that of investigating, exhaustively, all of the symptoms and effects of one's condition – was remarkably similar to the process which eventually helped me to break down the barrier to effective treatment. Before making an appointment to see the GP, I wrote down over a period of weeks (enough time to work myself up to seeing them, and to take plenty of breathers from what was a pretty horrible task, frankly) exactly what my immediate and historical symptoms and episodes were, warts and all, even and especially the stuff I really wanted to bury. This way, I had a 'cue sheet' for when the going got tough, and one which I could always give to the doctor to read if I couldn't face saying certain things aloud. Also, when it came to writing my letter of self- referral, already having something on paper made doing this under pressure a lot easier and reduced the risk of my wimping out and not putting the really shit bits in as simply copying it out made me detatch from the process of writing. Prior to doing this, I also went through what I had written with D. This was crucial – like the members of OA I had the pleasure to meet, I had spent years in fear of what I think and do when ill, and of the fact that these things could very well make me a fundamentally bad person. For the OA members and for me, the experience of someone you love and respect knowing your darkest thoughts and deeds – and consequently really knowing you rather than the sanitised version you are struggling to project – and accepting you anyway brought about an almost immediate shift in thinking. For me, if such a wonderful person had heard and understood all the things I thought were terrible about me, and responded with 'that explains a lot. Now I understand , and can actually help you rather than worrying that my girlfriend was kidnapped and replaced by a neurotic doppelganger. Still love you. Do you want hug and some of my pie?' then maybe I could start to consider the formerly ludicrous possibility that I was not quite so rubbish as I had always imagined.

2. Enlist the troops. Basically, this is the creation of the 'support network' that all mental health professionals will advise you to have. Whether it's the one person you initially told about your intention to seek help, a dedicated support group (this comes highly recommended if you are worried about involving friends or family too closely), or a group of close friends, get yourself a mini-army who will support you through the following steps: they will be the people to have your back in appointments when necessary, to speak on your behalf when you find it too difficult, and to keep you on-track during the whole process.

3. Setting Objectives. Ridiculously, my City sales training (yeah yeah yeah, I was a recruitment consultant for lawyers, I lasted six months ie. the point at which hypomania and the novelty of playing Mad Men dress-up had simultaneously begun to wane, please laugh) probably played a big part in helping me communicate with my GP. Much like an actor is taught to 'know their motivation' for a scene, you must set an objective for every single sales call and meeting you enter into. In most cases the objective will be a small step towards a larger goal which seems scary and unachievable on its own. For example 'today I will get this person to send me their CV' with the overall goal being 'I will manage to persuade both them and the client that they are the best person for the job even though they are massively underqualified, have zero experience and a patchy work history and don't want to work for them anyway thereby securing a hefty commission cheque and not getting sacked'. Once this principle was transferreed to my October visit to the GP, my objective became 'today I will get my GP to refer me for further treatment' with the overall, big scary goal being 'I will get better, stop self-harming, stabilise my mood, hold down a job, engage in further study, manage and enjoy a functional relationship, and avoid completely self-destructing every 6 months.'

4. Objection handling. This dark art is one of the first things any sales trainer worth their salt will drill into their trembling recruits. In the legal recruitment world, objection handling is the practice of trying to get someone to stay on the phone to you after you've called them in the middle of a really important Lawyer meeting and tried to sell them an imaginary job (in the hope that they'll go for it so you can tell them it's unfortunately now off the market but do they want to interview for this one instead except it's totally a waste of their time but it does help you hit your targets) and they have – entirely justifiably – told you to fuck off. There's a little acronym for doing this, LAARC (not to be confued with LARPS, or indeed 'having a lark' which it is emphatically not) which goes:

Listen (carefully to the objection), eg. 'I don't want another job. My job is a nice job and in case you hadn't noticed we are in fact in the middle of the biggest global recession for 80 years you ridiculous parasite'

Acknowledge (their concern) eg. 'I appreciate that you are content in your current role'

Assess (the root of the concern)eg. 'I can understand that you are reluctant to look into the market right now given the current economic climate'

Respond (by offering a lovely solution. There is always a lovely solution, even and especially if it is an outrageous lie) 'But you're obviously also very career-conscious and I'm sure you wouldn't want to miss out on the ideal role so why don't you come in for a chat (during which we'll ply you with coffee, biscuits and smarm, convince you that your current firm is about to take a nose-dive and that your career hangs in the balance unless you apply for this shiny shiny job Right Now) and we can let you know as and when interesting things come up.

Confirm (your course of action) 'So what I'll do is I'll book you in for a meeting with myself and my colleague tomorrow at 8am'

Translate this to a GP situation and you get something like this:

L: 'You don't look too depressed and you're not manic. Here, have this Cytalopram, it will take the edge off.

A: 'I appreciate that my full range of symptoms might not be immediately obvious'.

A: 'I can understand that you want to treat the symptoms of depression'

R: 'I am not manic at the moment, and when I am I do not believe anything is wrong but I have had several episodes (hand over cue sheet if necessary). I am currently coming out of a very severe depressive episode (indicate on cue sheet if necessary) which is why I have been able to get myself here at all. Anti-depressants have not helped in the past as they induce mania, so I would rather not take Cytalopram'.

C: What I do want is a long-term solution that will enable me to live with my condition. I would like to be referred to a psychiatrist, please.

Repeat as necessary, with help from the troops if needed. In the process, you will more than likely demonstrate a much greater knowledge of your condition, needs, and the mental health system itself than your GP, and they will agree to refer you.

So hoorah! Objective achieved! GP Barrier broken! At this point, however you will need to arm yourself for the next step: achieving a correct diagnosis and a programme of treatment that works for you. In Part Three, we'll look at the strange science that is mental health diagnostics and the fabled guinea-pig approach that many psychiatrists seem to take to drug treatment. Until then, good luck, and happy barrier-breaking!

The Trouble with Doctors: Part One - Getting the Buggers to Listen

A snazzy new report courtesy of the good people of the London School of Economics hit the headlines recently, suggesting that whilst mental illness is now thought to account for half of all illness in the UK, only a quarter of those who suffer receive any treatment. Well, jolly good and about time. The bit that really interested me, however, was barely touched upon in the press bar a few sweeping statements about 'doctors not taking patients seriously'. It transpires that GPs, in the vast majority, do no mental health rotation during their training whatsoever. This despite the fact that they are – in the words of the report – the 'ongoing physicians for nearly all mentally ill people.' This is particularly striking as it reflects one of the principal issues I and many of my peers have continually come up against, and which is evidently still widespread. The ignorance of many GPs when faced with a patient suffering with a mental health condition is a huge barrier to receiving a correct diagnosis, let alone correct treatment, and can be especially confusing and demoralising if you are seeking help for the first time and/or when you are relatively young. As a now-hardened mental health service user, accustomed to navigating the murky waters of the NHS in pursuit of a treatment that actually works, I thought it might be useful to throw in my two pennorth on the subject. The experience of seeking help will be different for everyone, so I don't wish to sound prescriptive (a pun! A doctor pun! Ahahahaa, ugh.) but there are a few things I've learned along the way that I wish I had known ten years ago, so I thought I'd set them down in the hope that someone else might find them helpful too.

Chances are that when you were very young, diagnoses were a piece of cake. You're ill: you get taken to the GP. They know all about ill. They'll give you some of that banana flavoured stuff and you've probably got a half-decent shot at some Calpol too, brilliant, yum. Better now! As you get a bit older, you realise that although it is not unknown for your GP to misdiagnose a physical complaint, the onus is on them to look at what's wrong and tell you how to fix it, perhaps referring you on to a specialist in the process. It therefore comes as something of a shock to realise that mental diagnoses operate in the opposite way.  This fact alone is, I believe, one of the least-understood facts about the struggle to get help and treatment.  If someone has never received treatment for anything other than a physical ailment, it is understandable that they would have the same view of doctors as we did as children: all you have to do is turn up with your symptoms and they will fix them. For example, when I turned up at my surgery with an achy back and trouble weeing, I had no idea that it was a kidney infection, or that I would need to see this doctor in that hospital and take this drug to get well.  I just said 'I've got an achy back and trouble weeing, any chance you could sort it out?'  In stark contrast, the entire mental health diagnostic process relies on you, the patient, telling the doctor exactly what is wrong and exactly what you need, often writing your letter of referral to the appropriate specialist yourself. Say this is the first time you have ever experienced symptoms of depression, or psychosis, or mania: it is very unlikely that you will have the knowledge of they metal health system, or even the vocabulary, to articulate this.  There are also two further issues specific to bipolar which I have outlined below:

1. Attempting a visit to the doctor in the first place when in the throes of either depression or mania is tricksy to say the least. For a start, when manic, it is highly unlikely that you will even recognise that you are ill and in need of intervention. You will probably be too busy bouncing around in the manner of a sleep-deprived, inhibition-haemmoraging pinball, throwing out all your clothes and furniture and declaring that you have decided to live forevermore without the hindrance of material possessions (ahem). In the opposite state, meanwhile, you will probably be rocking in a corner under a duvet and unable to leave the house, let alone get dressed and be in a waiting room with Other People. In the short windows of clarity between this state and depression, chances are that you're so ashamed, terrified and relieved it's over you decide to file the episode in the box marked 'This Never Happened' and carry on.

2. So help-seeking is generally limited to times of depression. This brings with it its own set of barriers, and generally if you do summon up the courage to make it down to the GP (no mean feat), you run into murky waters again. In some cases, the terror of going out in public may have spurred you on to discard the Holey Leggings of Depression (HLD) and reach for actual clothes, makeup and sunglasses the size of Russia. In practice, this often leads to the irritatingly common objection that 'you don't look depressed'. Even when in full possession of HLD, weepy and horribly anxious, many GPs will seem suspicious of the fact that you have come at all, working on the logic that if you are un-depressed enough to have actually left the house then you are clearly not in need of help. 


3. There is probably a fairly sizeable part of you that doesn't actually want to believe that something is wrong. You've heard stories about this kind of thing but you'd really rather it didn't apply to you, even if it has being going on for years: after all, being bipolar means you must be Proper Mental and you're not sure you're ready to face up to that. In the case of my peers and I, you're also British. This means that when they give you one of those godawful questionnaires, you know the ones: 'how depressed are you from 1 – 10, 1 being fine and dandy and 10 being suicidal' even if you are in fact a 9, you are hardwired to reject melodrama and most importantly, not to want to be any trouble to the nice doctor. For those not familiar with our peculiar Limey ways, this cartoon should illustrate it perfectly:

In reality, of course, any drowning metaphors are liable to be much more Stevie Smith in nature. On a slight tangent, Smith managed to pack what is for me the truest and most haunting evocation of depression into twelve lines:

Nobody heard him, the dead man,
But still he lay moaning:
I was much further out than you thought
And not waving but drowning.

Poor chap, he always loved larking
And now he's dead
It must have been too cold for him his heart gave way,
They said.

Oh, no no no, it was too cold always
(Still the dead one lay moaning)
I was much too far out all my life
And not waving but drowning.

But I digress. The merry dance illustrated above is one that many sufferers of mental health conditions lead with their GPs , leading them to be 'bounced back' from accessing the treatment they really need as they never even get to the referral stage. At 'best' they might be fobbed off with some Cytalopram (for the uninitiated this is the cheapest available anti-depressant on the market and the go-to drug for the symptoms of anxiety and mild depression at GP stage. Of course, these symptoms are often only a fraction of a wider condition and it is actively dangerous to prescribe it to those with bipolar as it can induce a manic phase: in my case Cytalopram had no effect whatsoever, so my GP bumped me up to Fluoxetine – Prozac, basically – which, being a stronger 'upper', sent me spiralling off into hypomania.).   My October 2011 trip to the GP shows how rife this potentially very damaging course of action is: even with my entire mental health history - suicide attempts, crisis team interventions, manic episodes and all - literally at his fingertips, my GP nodded at me for three minutes as I faltered through my symptoms before interrupting me to attempt a Cytalopram prescription rather than look it over. 

Essentially, there is a huge Catch 22 at the heart of the system: a correct diagnosis is to a sufferer what an Equity Card is to an actor - you can't get one until you're deemed ill enough, and when you are ill enough you're too ill to seek one. This can go on for years and lead to the situation we are now in, i.e. 75% of us going without treatment for some pretty disabling conditions, unless the cycle is broken.  Hopefully GPs will indeed be required to undergo mental health training at some point, but the worlds of academia and politics move slowly, and policies such as these take years to show any real results. So until then, it's down to us crazies to make sure we get the treatment we need. As a young adult knocked for six by the onset of my condition, I really was pretty ill-equipped for this task. Over the years, however, and with a bit of help from the most unlikely of places, I discovered a few things that helped me through the barriers above and got me the diagnosis and treatment I needed: I'm putting them into some kind of coherent, legible form for my next post, so watch this space!

Getting Here: Part One

October 2011

J is overrunning and I am living on 6 years and 7 months of borrowed time by my last calculation. After living with The Condition for as long as I can remember, flirting with varying degrees of seriousness with putting a name to it before running terrified in the opposite direction, I have finally thrown in the towel and come here, to a discreet institution in south London, to Seek Help.

I’m reminded in the waiting room of the previous attempts I have made to Seek Help, which, like many in my situation, have come in dribs and drabs throughout my life. The most concerted effort previous to coming to J was after failing to die when I was supposed to and – on the intervention of my family – undergoing psychiatric assessment in my university town. The frustrating thing about mood disorders, however, is that their symptoms are cunningly akin to those also associated with the chronic condition known as Being Nineteen. These typically include, but are not limited to:

A) Frequent changes of appearance, beliefs, principles, even accent – the putting on of a new personality and identity at the drop of a hat. These coincide neatly with:

B) Obligatory severe mood swings, which make it nigh on impossible to commit to anything long-term. The troughs and peaks of these are broadly experienced as follows:

C) Self-loathing. This typically leads to:

i) Social anxiety, which in turn gives rise to awkward behaviour in group situations and repeated incidences of self-medication through controlled substances (a nicer way of saying ‘development of alcohol and drug dependency’).

ii) Inability to fulfill work, study and relationship commitments.

iii) Deliberate self-isolation and immersion in the works of Sarah Kane, Georges Bataille, Nietzsche, insert further clichés as applicable.

D) Feelings of invincibility, as though the normal rules of the world do not apply to oneself. This typically leads to:

1. Uncontrollable spending and financial trouble.
2. Excessive casual sex with scant regard for emotional damage caused to self or others.
3. Putting oneself into dangerous, unstable and/or risky situations with scant regard for the consequences to self or others.

Tricksy. This is also further complicated by the fact that bipolar exists – like most things in life – on a spectrum, ranging from severe depression to full-blown mania. Just before you get to mania, there’s a state called hypomania, characterized by a burst of fizzy, sparkling energy in which everything is faster and brighter and funnier and impossibly wonderful. It’s suddenly possible to survive on no sleep and still be more productive than your ‘normal’ self three times over. The feelings of invincibility start to creep in here, too, and can have detrimental effects (see above). It remains distinct, however, from full-blown mania which at its peak can veer into the realms of psychosis, incorporating auditory and visual hallucinations. Whereas a hypomanic person might think they’re a bit special, a manic person can literally believe that they are Jesus. Whilst I have experienced a couple of isolated psychotic episodes (terrifying and not recommended), I do not experience ‘true’ mania as part of my condition. Recently, this led J to give me a diagnosis of Bipolar Affective Disorder, Type II (a lady called Karla Dougherty wrote a guide to living with this entitled ‘Less Than Crazy’ which pretty much sums it up). Aged 19, however, it was suggested that I could not possibly be bipolar as I didn’t get ‘proper mania’, and that whilst I had suffered with a speck or too of severe depression and anxiety, I was also a bit wild and silly, and should really try harder to be stable and pull myself together. The best course of action in the immediate term appeared to be providing me with a heavy dose of a tranquilizer so addictive that you’re not supposed to take it for longer than three weeks, ‘just to take the edge off’. In the end, I took it for around five months, with one GP advising that I keep a prescription in a drawer as ‘some patients find it eases their mind, just being able to look at it and knowing that there’s some if they really need it’, and some Prozac. Unsurprisingly, medicating extreme highs and lows with strong medication inducing extreme highs and lows was not especially effective, but more of this later. My very northern mother, K, and stepdad, T, eventually brought me home, took me in hand and weaned me off the opiates. Following the spiralling high they had brought about, K, T and I also needed little persuasion that the uppers were a bad idea, and all of us were put off psychiatrists for the time being. Perhaps they were right on one thing though, I reasoned, unreasonably. Perhaps the highs and lows I had lived with for as long as I could remember were just adolescent character flaws and I really did need to just…well…try harder. In any case, the alternative was that I actually was bipolar, and that, as I had discovered, was proper mental. So, for the moment, a chapter of the recovery process I like to call Trying Really Hard Not To Be Crazy (TRH) looked like the best course of action.