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The Royal College of Psychiatrists Improving the lives of people with mental illness

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05/02/2016 14:42:54

Finding a way back home

This is a personal blog and in no way represents the views of any organisation. Views expressed are my own.


So, what happened to me? Well, whatever contributed to it - over however long - as I've mentioned before in this column, I had ended up in a very dark place.

Once I had been given SSRI 'antidepressant' tablets, before I knew it I was flying sky-high; colours seemed more intense and everything seemed inextricably connected to everything else, and possible ... I'd been taken to the polar opposite of where I'd been when I started the drugs.

Over long years, fluctuations went on to settle into a pattern to the point where I was spending almost exactly three months in either state (either wildly elated and super-charged or languishing in an inert pile, immersed in dark clouds, not knowing how I was going to find the strength to carry on or being able to visualise any kind of future), making it almost impossible to hold down a regular job or gain momentum in anything I did.

In the end it was Warwick Davis' gremlin advertisement (which I later found out was for Learning Direct) that was the catalyst and finally got through to me. Well, I guess it tipped the balance. It's never usually just one consideration that initiates a change of direction, is it? One evening, in the interval between programmes - as the grotesque creature grabbed the woman's arm with his disproportionately long, spiny fingers, evincing a tangible air of menace, and began viciously laying into her in a sneering, personal verbal attack - I involuntarily acknowledged: "I've got one of those!"

GremlinI discovered later these ads were designed to encourage adults to return to college and study literacy and numeracy; uh, more like - to shame and scare them into it, I'd say! But what I took from them was something about embracing education as a route back to a balanced and fulfilled life, and they gave me a new thought: the aim was to say goodbye to the gremlin, and I suddenly realized that I could perhaps challenge an external malignant influence, so long as the problem wasn't an illness inherent in my own brain.

I wanted to tell you about this because, ironically, identifying and naming my shadow side led to me eventually being able to make friends with my gremlin and get my life more or less back on course ... but only over an extremely long period of time. It's been eighteen years since my daughter was born and I was first given psychotropics. I muddled along with great difficulty (both on and off drugs) for years, reading voraciously anything that might help - living less than half a life. My time was a mixture of mini-breakthroughs and crashes.

Finally, galvanised by that ad, nine years ago I embarked on a local college retraining course for women which required me to do a GCSE- level literacy assessment. It was humbling, as I had a degree in English Literature from years before, but I realised I could still learn things. My spelling was never the best. I didn't even realise how much I'd been getting wrong until I used a computer. It was on this course that I very first did so; and on which I realised proudly I was 'surfing' on the internet for the first time, and learned to format pictures and paste them into documents. I also learned to touch-type. This has proved an invaluable skill.

A work skills 'access' course was perhaps an unlikely route back towards stability (I later found out it was a 'life skills' course: you know, you get a certificate at the end for having attended. Actually, that's not so unlike the way professional conferences seem to work :-) But at the time I was hiding away at home, almost afraid to go out.

I realised I had to start somewhere and, in fact, largely as a result of the excellent tutor who had set it up as a result of her vision of catching people who'd fallen between society's cracks, it was immensely rewarding. Looking back, I can see that gradually reconnecting with my innate abilities and talents was what made the difference for me.

I was able to read up myself about what I was going through - constantly fielding Mum's illness whilst enduring my own - once I discovered a few key authors on 'mental health' issues. I then went on to explore other, likely-sounding titles at the back of their books. Somehow that learning wasn't something I could have done in groups. I wanted to dive deeply into the available information, conduct personal research and explore how this resonated with my inner truth, experience and own perceptions. I guess that's to do with my analytical mindset (whether well or not so well), and desire for more than superficial information that I can assimilate in my own time.

We're all different and, while lip-service is paid to that fact, it's not really taken on board when we're less able to cope. Certainly our abilities to think, reason and concentrate, our motor skills and so on - tend to be compromised when we are in a reduced state. Yet we are currently consigned to categories and 'clusters': we're not viewed, when it comes down to it, as simply struggling, hurting human-beings. I have plenty of thoughts about 'recovery colleges', 'happiness audits', and proposals for Cognitive Behavioural Therapy (CBT) therapists to be in Job Centres and the Department of Work and Pensions in food banks. There is officially-speaking no middle ground between being really unwell (implicitly in-valid; consequently on full benefits) and 'well', i.e. considered able to go straight back into full-on work again. But these are topics for another time

Suffice to say, I was offered a short course of CBT (after I had engaged in years of counselling and the like). It felt almost like a penal exercise – as if I were being sent for 'corrective thinking' – and, because the allocated bundle of sessions is so brief, it felt like being short-changed at the same time, as though the whole exercise was simply fulfilling a box-ticking exercise designed to satisfy government targets: a single intervention, rolled out as a one-size-fits-all service, offered to people with wide-ranging complaints who are languishing in varying depths of distress.

It’s something GPs can offer (and be seen to be doing something), even when a person they refer inappropriately has been suffering for 20+ years and been around the houses a number of times. If these intelligent people stopped to think, even they would realise that this is adding insult to injury in amongst all the talk of ‘person-centred' care’. For a start, people in this predicament should not be having to discuss their challenges with general practitioners in the first place, of course. Change, after long swathes of time have elapsed and much of import has gone down, is so much more difficult.

My Women Into Work course was followed up with some impersonal, contracted-out phone survey months' later. The young chap from the call centre picked a particularly bad day. I was sitting on the settee, unable to motivate myself to do anything, and I cursed myself for answering the phone. I felt like a gibbering wreck and could only give a dismal account of myself. I felt much worse once I hung up and dissolved into floods of tears. For all my high hopes, I taunted myself bitterly, what had I gone on to achieve and do?

A few months later I did begin temporary work, and this led a year later to me securing a permanent job (part-time) and going back to university too - working towards a master's degree in social sciences. If the young man had called me then his outcome report would have looked impressive.

Yet neither snapshot would have meant anything much. I completed a year at the university, but at that point realised I couldn't simply think my way out of my problems. How could I have thought it'd be that easy? The experience wasn't wasted. I learned loads, coming away with a post-grad certificate which enhances my CV and a wealth of vital knowledge I've gone on to use since. But I had been trying to self-fund the course on meagre earnings and the internal cycling pattern I've discussed before was by then firmly established, defining my life, exhausting me and scotching any plans. It was just all too much. Mum was extremely unwell, needing me to be in daily contact, and she was admitted to psych units - with all that entails - several times that year too (this was our 'normal life', and pattern, at that time).

Through all this, anyhow, I was given immense insight into the predicament of society's disenfranchised. I used to yearn 'just to feel comfortable in my own skin' and reflect on how some blessed people - whether materially, in temperament, circumstances or all three - have such an incredible advantage in this world. It's one thing to be able to get a job, and that's hard enough for anyone these days, or to sign up for ambitious course in an attempt to better one's employment chances long term, quite another to be able to sustain all that's necessary to hold it down.

If I were to receive a telephone enquiry now, I could finally say unequivocally that the humble course I took at the local college really helped me - that my re-engagement with the concept of a future worth the name effectively started there. But it's nearly 10 years later! This is one of the main reasons I find the idea of 'payment by results', as an assessment of interventions attempting to address hidden and elusive states of ill health and/or troubled spirit*, so bizarre. Discussion of this would bring into question the entire psychiatric diagnostic system. Another theme for some other day!)

* I mean, just how long after an instance of emotional (and therefore usually at least a degree of work capacity and lifestyle) breakdown can you say you have a 'result'? I'd hazard a guess that most results that could be seen as positive in this field occur a long way downstream and, anyhow, isn't life itself more often than not a process of reverses and reinventions of ourselves? We muddle through as best we can. 'Quality of life' and related abstract concepts are notoriously difficult to measure. Qualitative, thoughtful means - and mindset - are necessary to attempt to more nearly form a genuine picture of a person's health and well-being status.

Jeanette Winterson reflected, in Why be Happy When You Could Be Normal? - surely one of the best book titles of all time -

"I know now ... that the finding/losing, forgetting/remembering, leaving/returning never stops. The whole of life is about another chance, and while we are alive, till the very end, there is always another chance".

While T.S. Eliot observed:

"There is only the fight to recover what has been lost
And found and lost again and again: and now, under conditions
That seem unpropitious ...

... To arrive where you are, to get from where you are not,
You must go by a way wherein there is no ecstasy.
In order to arrive at what you do not know
You must go by a way which is the way of ignorance.
In order to possess what you do not possess
You must go by the way of dispossession.
In order to arrive at where you are not
You must go through the way in which you are not.
And what you do not know is the only thing you know ..."

A familiar feeling!

It was pointed out to me just a few weeks ago that the mental health service isn’t there for any of us individually; it’s to serve the interests of the government – to implement social control, principally. Once we're clear about it, it's easier to understand what's we're dealing with. Questions concerning power and control are fundamental when trying to see what's defining the culture of communities; and ultimately so where mental health is compromised, and individuals are rendered extremely vulnerable.

One believes things because one has been conditioned to believe them. - Aldous Huxley

Chris Jordon, an innovative American photojournalist, in his TED talk Turning Powerful Stats into Art reflected:

"I have this fear that we aren't feeling enough as a culture right now. There's this kind of anaesthesia ... we've lost our sense of outrage, our anger and our grief about what's going on ... the atrocities being committed. These feelings have gone missing".

He was discussing our inability to respond to shocking news reports and phenomena like mass carnage, the percentage of the population in prison, of people who are homeless; the plight of refugees, fellow humans living in war zones and so on. His words, however, are equally applicable to our 'mental healthcare' predicament, where we witness legalized involuntary incarceration, forced drugging and the creation of an underclass - the treatment of fellow human beings as guinea pigs, messing with their self-respect and subjecting them often to inappropriate and ultimately harmful treatment.

I feel fortunate to have re-emerged as a functioning entity right at this time, when we need all hands on deck, fortified by the sentiment:

"Speak the truth, even if your voice shakes".

There is room for everyone in the battle for authenticity, and the move towards the practice of enlightened healing interventions: where body, mind and spirit are acknowledged to be one and the same. I hope that, whether you are someone who is still in the throes of struggle or a survivor feeling firm ground beneath your feet, you will feel able to link up with me and the wider community working towards the same goals - for camaraderie and support - and will be able to look back before too long from an ever stronger, outward-looking position adding the weight of your own priceless experiences, unique skills, passion and wisdom to the common cause.

Find me on Twitter: @NickyHay4Blog

14/01/2016 14:25:11

Attempting to survive in a brave new world ...

This is a personal blog and in no way represents the views of any organisation. Views expressed are my own.

Life is astonishing - full of coincidences and opportunities for ongoing elucidation, when we pause long enough to contemplate its strange interwovenness. I realised, as I prepared to write today, that a recent incidental experience provides a powerful lead in to my thoughts about my own reintegration. 

A few months ago I was in Prague and happened upon an exhibition, in the cavernous, purpose-built Dox modern art gallery, called Brave New World.  It set out to explore and expand upon the dystopian future visions that were eerily conjured up by Orwell and Huxley in their respective novels 1984 and Brave New World, and  Bradbury's Fahrenheit 451 (all astonishing in their prescience; amazingly these works were published over half  a century ago). 

More than 20 contemporary artists from around the world were issuing similar warnings in  the collected work on view; a shared realization summed up the guide brochure's introductory paragraphs:

"Alas, these writers were referring to a future that has already arrived ..."

In Brave New World Revisited (pub.1958), Huxley reflected:

“The real hopeless victims of mental illness are to be found among those who appear to be most normal.

Many of them are normal because they are so well adjusted to our mode of existence, because their human voice has been silenced so early in their lives, that they do not even struggle or suffer or develop symptoms as the neurotic does. They are normal not in what may be called the absolute sense of the word; they are normal only in relation to a profoundly abnormal society. Their perfect adjustment to that abnormal society is a measure of their mental sickness - these millions of abnormally normal people, living without fuss in a society to which, if they were fully human beings, they ought not to be adjusted ... Man is not made to be an automaton, and if he becomes one the basis for mental health is destroyed".


Brave New World

 

The themes explored in the exhibition, and the resonating thoughts and feelings it left me with, gave me a framework to better understand the increasing discomfort I'd been feeling with attitudes I had been encountering in the 'mental health' activism/ 'involvement' arena. Throughout the years of trying to field my mother's crises and problems while attempting to eke out some kind of life for myself, I'd told myself that perhaps one day I could become 'part of the cure rather than part of the problem' (which is what I felt, at the time, I was).

 

 

For so many years I had merely limped along, my resilience worn to a shred, feeling jumpy and as though a raw nerve was exposed. I could only feel and see life's terrifying side. But once I tentatively joined others who were grappling with similar situations and feelings, I simultaneously met fellow souls who I felt as though I'd known all my life after five minutes -  no explanations were necessary - and individuals more from the corporate mould, with whom attempts at communication were as challenging as any out in the harsh world.

In my experience, in the majority of settings, there is still a massive power imbalance between professionals working in tandem with co-opted 'staff' (non-professionals appointed into organisational roles) and the rank-and-file, lay people, although a lot of claims these days are made about services being constructed from the 'bottom up' (as opposed to 'top down').  For a start, much is made of academic background, sphere of influence, profile and articulacy when selections for committees and groups are made.  I was asked by someone in our local mental health trust whether I was representing 'a constituency'!  Personal experience, passion for change, keen interest and willingness weren't seen qualification and recommendation enough. 

You need a pretty good Curriculum Vitae to be considered even for voluntary posts these days, and yet the voice of the typical patient/service user and/or carer/supporter is supposedly being represented.  As a rule of thumb, only those who are fairly resilient and capable of performing pretty much to a professional standard need apply.  Input tends to be invited only insofar as it'll fit neatly into templates, agenda-heavy meetings and predetermined slots in presentations, in a competitive culture; emphasis is put upon e.g. reporting, informing and dispensing wisdom in leaflets rather than everyone discussing, debating, exploring and attempting to evolve together.

Furthermore mental health professionals who have lived experience of their own are unlikely to be open about their status (at least, consistently).  This holds everything back hugely both for them and others in their profession, where stigma is still rife, and for those volunteers who - in meetings, and whilst campaigning out in society - lay their souls bare, having been humbled through bitter experience and become infused with a passion to do all we can to save others from hitting rock-bottom.  Institutionalised stigma still abounds and, where people are not encouraged to be open even within mental health organisations, what hope is there that we can make significant progress towards combating social prejudice?  Until the medical profession and big allied organisations become transparent, and their running becomes genuinely egalitarian, respectful and democratic, we are surely not going to see the transformation within mental health 'care'  that so many of us are working for. 

I had not imagined it would be like this, once I mustered the courage to put myself up for this sort of (effectively voluntary) work.  I had entered the fray starry-eyed and had idealistically imagined I'd join a tribe of like-minded souls, united in a spirit of mutual support and enablement and focused on a common cause. I have met some truly amazing people, and one good contact has always led on to another, so nothing's been wasted. In the event, in the 'mental health care' field, though, I have often been reminded of Orwell's 'Newspeak'. In this fictional language, in the novel 1984, everything means the opposite of what is actually being said.  People don't feel valued or valuable, of course, when none of their suggestions are taken on board, naturally, or welcome when - despite having their physical needs expertly catered for, their expenses covered and being paid, perhaps, a sessional fee - their insights and unique talents are not sought out or even invited, and they're not embraced as fellow voyagers with unique gifts to offer.  What a wasted opportunity it is, when government directives and guidelines are followed and organisations' achievements look admirable, yet there is no soul or substance involved - just a sparkling facade that fits well with our society's rigid concepts of 'reality', acceptable 'norms' of behaviour and the delusion that we live in a civilized culture. 

How could we, when it's propped up by exploitation, corruption, mass manipulation and war?  As Mahatma Gandhi famously said when asked what he thought of Western Civilization:  "I think it would be a good idea". 

Surely it's our society, with all its inequalities and prejudices, which is sick? ... and those of us who buckle under the pressure are simply pawns, or unfortunate victims of collateral damage.

I was greatly helped by a counsellor once when she simply reminded me,  "Life doesn't deal an even hand". Having been someone at that time who constantly doubted my own judgement, compared myself with others and found myself sorely wanting, it was helpful to be assured of something that was self-evidently true, by someone I trusted, at a time when I could not trust my own perceptions and reasoning.

Later on, I was comforted by author Steve Furtick's observation:  "The reason people struggle with insecurity is because we compare our own behind-the-scenes with everybody else's highlight reel".  You can't compare what's not comparable and expect to draw sensible conclusions.  The imagery of projection is particularly appropriate here.

Things felt as though they were upside down to me, and now I know that a lot of them were.  After a lifetime of attempting to stay the right way up, and retain sanity amidst the turmoil and perpetual reverses of a caring role, this felt like the final twist.  I'd imagined we'd have been built up instead of pushed and torn down; we'd have been supported and re-skilled (not made to feel de-skilled).  But the fact that I had supported my mother for most of my life and then become ill myself proved to be an insuperable challenge in arenas of tokenistic survivor representation. I fell into both categories on offer - 'carer' and 'service user' - but was informed that I had to apply to represent one group or the other (and how can that be objectively done, I really wonder?  Surely in the end we can only put across our own perspectives, bringing whatever seems relevant from our range of applicable experience into discussions as it feels appropriate and constructive?) 

I came to realise that the only way I was going to be able to speak out with authenticity was by operating as an independent and returning to my roots; to my propensity for networking and ability to write down my reflections and bring others along on my journey of enquiry.

With these thoughts on my mind - upon entering the stark, utilitarian building that housed the  Czech gallery - I was drawn to an exhibit labelled 'Disconnected' which was focused on people who, unable to cope, have removed themselves from contemporary society pretty much completely. 

The plaque explaining a series of  sombre, black-and-white photographic images began:

"For many people today's fast-paced and overly-organised world, focused on performance and success, is ceasing to become a place in which they are able to exist. Their sensitivity or inability to adapt to performance and function has sentenced them to the role of 'patients' or 'drop-outs' that 'fail', for various reasons, socially, economically and physically".

Hikikomori

 

This led on to discussion of the Hikikomori * - the 'silent' or 'lost generation' of youth in Japan (*hiki means pull, komoru, to withdraw - rough translation: those who pull out), a phenomenon well worth googling. Wikipedia introduces this 'Japanese term referring to the phenomenon of reclusive adolescents or adults who withdraw from social life, often seeking extreme degrees of isolation and confinement', while the dictionary definition is 'the abnormal avoidance of social contact, typically by adolescent males. These youths take to their bedrooms sleeping all day and surfing the net all night'.  There are known to be over a million Hikikomori currently in Japan (which means there are many more not included in the official figures) and people are starting to write about the syndrome existing in other countries, including America and, yes, the UK.

This burgeoning issue is centrally relevant to consideration of our own people and culture. Japan is a very extreme society, flooded with technology and yet still very traditional, where there's massive pressure to achieve in academic and material terms; saving face and striving for peak achievement is still mandatory, and 'mental health' is still virtually a taboo subject. 

The exhibitors conveyed - through powerful diverse media and constructs - the urgent need for systemic change, and the fact that a shift in our collective consciousness is the only way forward for us as a race if we are to achieve greater wellbeing, both personally and as a true community going forward. 

I came away from the exhibition with a sense of having had a lucky escape, having finally returned to myself and gained the confidence to know the promptings of my own heart and mind; one can so easily get lost and not come back, particularly nowadays.  We are all so fragile, as Sting pointed out.

I feel personally fortunate in that I have eventually begun to find a way forward, and a platform to express my reflections and views through my writing, which resonates with me more, even, than any path I had found before ... before I became seriously involved in supporting my mum and before I became ill myself. Such 'flow' experiences are officially recognised as affirming creativity and enhancing an inner sense of worth. Life does still occasionally surprise us with a ladder or two when all we've come to expect are snakes!  I am deeply concerned, however, for those others who venture outside their severely contracted lives (possibly for the first time) to tentatively try out volunteering, very likely encouraged by its hard sell promoters - who include, I saw the other day, the Bank of England - and get burned. I am speaking here about anyone who has had their life disrupted by mental illness: survivors in their own right and/or carer survivors. 

People whose authentic and independent observations would add critical value to the pool of knowledge in the field are being silenced and further diminished upon offering their services largely because we are typically paid next to nothing (if paid at all) and, even more significantly, our wealth of experience is hardly tapped and our input only invited within constricted parameters. Feeling disempowered, patronised and crushed after years of frustrating and draining dealings with the services, in so many instances it feels as though we've stepped back into a similarly upsetting, undermining and oppressive culture.  The more I observe and learn, the more aware I become of quite how much needs to be done to help and support those who, one way and another, have become marginalised and effectively lost along the way and that, if our aim is to collectively evolve,

 

                             The only wisdom we can hope to acquire

                          Is the wisdom of humility: humility is endless

 

                                                                                               T.S.Eliot

15/09/2015 13:39:33

Perceiving a will for change

In the run up to polling day in the UK, a few months ago, we saw each of the main political parties falling over themselves to claim that they were the most sympathetic to mental health policy reform, assuring us they alone would usher in a golden era where both those with physical and mental health needs would be treated with equal respect, fairness and efficiency; they would significantly increase funding and staffing, bring down the suicide rate, blah, blah, blah.  Funny how we heard little of this over the preceding five years, and we’ll undoubtedly see very little genuine evolution and improvement in the next, now that the Conservatives got back in - this time with a majority.  ‘Grumpy Old Woman’ I may be, but I prefer these days to put my faith in individuals and the power of focussed communities rather than politicians – certainly national political figureheads – whilst the political pendulum swings to and fro, or stays static for a while.  It seems to me that the best chance we have lies in supporting each other; in common recognition, when one of us is up against it, that we are all vulnerable and tomorrow that person could be us. 

The day before yesterday my seventeen-year-old daughter’s card wouldn’t work at a self-checkout terminal.  She called me at a nearby coffee shop and asked me to come and pay the £5 that was outstanding. On my way there, I saw her coming towards me, bulging supermarket carrier in hand.  She and her friend were gobsmacked.  A lady, a stranger, had come after them as they left the shop (walking to meet me for the cash) and handed them the bag of goodies, saying: “This is yours.  I paid for it for you!”  She then slipped off, so I couldn’t go and thank her or offer to settle up.  Such random acts of kindness touch our hearts and bring us up short.  I was astonished by the girls’ utter incomprehension - they obviously considered the mystery benefactor unbalanced in some way - and I went on to ask myself why we don’t behave like this more, anyhow?  The insular way that modern life tends to be conducted does nothing to help promote the cause of rebuilding community spirit, there’s enough money swilling around to make this kind of thing possible, and really it seems that’s our best hope for building ourselves a healthy and sustainable future.

Having only previously had personal experiences at the receiving end of ‘the system’ of statutory mental health care - whilst supporting my mother through episodes of acute mental illness and their aftermath, and later in my own right - my eyes were opened to the pressures behind the scenes in ‘the caring industry’ when I spent the best part of three years doing administrative work within the NHS, some of it as an agency worker.  Before this, I have to admit, I’d become pretty disillusioned with what did and didn’t seem to be on offer although, looking back, my own skill in dealing with services on Mum’s behalf too had become severely compromised.  I progressively found my resilience in shreds and my own health on the line, as recurrent and prolonged depressive cycles threatened to batter my life into a permanently pale shadow of its former self. 

During this time, happily, I came across various initiatives aimed at humanizing both working cultures and relationships between workers and ‘service users’ (please forgive the jargon, as ever), most notably the Dignity In Care social movement. It’s heart-warming to see nurses, midwives and other health and social care professionals forming networks on social media sites to honour and encourage each other, as well – anyone can offer support, not just those in the profession in question, but critically this is somewhere that mutual support is offered, achievements are publicly recognised, and so on.  For, despite positive initiatives, having had a glimpse of what they’re up against I can wholeheartedly say that I don’t envy anyone who’s trying to do a good job, with integrity, in the pressured and highly regulated health and social care professions in these times. 

 

There are a wealth of carers’ networks out there nowadays too, of course, and these can be great sources of support and inspiration and offer amazing facilities for sharing information and promoting messages.  Nowadays as an ‘independent lived experience consultant’ (I have the badge!), however, I personally find it most constructive simply to strive for communication rather than identifying with any particular camp, as it seems that fragmentation is one of the central  challenges of our times.  Everything’s grown so big, it gets broken down into units and specialisms that hardly communicate: the task we face, it seems to me, is to recover a sense of thriving integration that restores our human connection.


I personally have been guilty of having unrealistic expectations of health professionals and this has, on occasion, led to confrontation and bitterness.  But equally - with what’s on offer being unequal from place to place, under different funding policies and managers, and varying at different times - it’s hard for those who need services to get a handle on what they can realistically expect or hope for.  Interestingly, however, it’s when commodities like consistency, reliability, kindness and common sense seem to be lacking (things it’s perfectly reasonable to require, which don’t cost anything) that frustration boils over into anger and people resort to things like official complaints.

 

In typical British manner, we seem to both eulogise and slate the NHS in equal measure, just as we unthinkingly tend to behave erratically with our own families behind closed doors counting on the assumption those closest to us will always be there.  There’s typically a casual, often affectionate, disrespect displayed amongst family members that we wouldn’t dream of displaying with our friends; and, of course, the danger is that this can become more serious and habitual, eroding key relationships - especially in direct relation to levels of increased dependence and responsibility.  We tend to adopt a similarly proprietorial and expectant attitude with our national health service, reasoning that the service is funded by our taxes and demanding an idealised and flawless service – it’s not just our children who are ‘the entitlement generation’, apparently. 

 

Miscommunication and a failure to transcend the ‘us’ and ‘them’ divide has tended to be a two way thing, characterised (in truth) by a nervous mistrust on both sides. Traditionally the healthcare professional/’patient’ divide was formally and deeply grooved from the establishment and professionals’ side.  Now that detailed information and knowledge are freely available via the internet, and it’s possible for a layperson to develop reasonable expertise on a given subject while GPs, for example (generalists by definition), are massively overloaded, with little time to keep up with developments in anything but, at best, areas of specialist interest. They are increasingly forced into a defensive gatekeeping role whilst more of us all the time are expansively researching our own health problems, and those of the people we support, equipping ourselves to be able to have an intelligent, collaborative conversation with professionals so long as this does not intimidate them and put them on their mettle. 

 

However, while we love to moan about all that’s wrong with the NHS, I sometimes wonder whether we’re ready to re-embrace a more autonomous stance and create a mutually supportive environment to make this possible.  Nearly 40 years ago, in the introduction to his seminal work of 1976 Limits to Medicine Catholic priest, philosopher and ‘maverick social critic’, Ivan Illich, remarked:  ‘The social commitment to provide all citizens with almost unlimited outputs from the medical system threatens to destroy the environmental and cultural conditions needed by people to live a life of constant autonomous healing. What is dangerous is a passive public that has come to rely on this trend, which needs to be recognised and reversed’.

 

A lot of what we get back, in life in general, depends on the way we approach things in the first place, and one of my personal campaigning drives is a quest for an equal service for every person and his/her supporters regardless of state of mind, race, background, intelligence and ability to self-advocate.  It seems so unfair that the outcome of a key triage appointment (one to decide how unwell you seem) should be determined by what you, and/or someone supporting you – assuming there is someone – is able to say on a single occasion at a given, random point in time when you are ill and not in the possession of your usual faculties. Leaving considerations like language barriers aside, an extremely unwell person who goes alone to the appointment might hardly be able to string a sentence together, is likely to paint an unrealistically black or understated picture of things and unlikely to have much perspective on the situation. She could make no sense whatsoever, and might well have a fluctuating condition meaning that how she comes over today hints at only a part of what’s going on. This single, snapshot visit does not tell a team member anything useful about her need for specialist help.

 

When I was ‘assessed’ three years ago, I spent less than half an hour in a room with someone who struck me as pretty clueless, and others have given similar accounts: years’ worth of medical records were not consulted in preparation; the GP I’d agonised with for years, inwardly wrestling to try to make sense together of what was happening, took no part in the conversation.  Long, critical weeks were wasted in which, thankfully, I managed to evade suicidal thoughts.  In my case, I had contacts – I was an old-timer as far as local services go, having accompanied Mum on her tortuous journey in this area for the previous ten years.  I knew who to talk to. Eventually The Red Sea was parted (that’s how it felt) and I found my way into the inner sanctum, for a decent conversation with someone who I could tell had some deep understanding.  But I’d needlessly had to go through a protracted triage system. The delay could, literally, have been fatal.

Understanding how few psychiatrists are actually available to cover vast areas of the country, though, makes you realise why such systems have been created. Recruitment for the profession of psychiatry is a real issue these days, especially in unpopular areas like children’s and old people’s mental health. The galling thing is the pretence that there’s fairness, objectivity and a balanced, skilled approach to our emotional/mental health needs, though, and it’s worrying to discover how few GPs have any training at all in mental health matters.  It seems they just have, effectively, a list of hardly comprehensive - or really comprehended - prescription options, with pharmaceutical interventions more often than not creating further complications down the line.

 

Amazingly, despite Mum’s extreme unwellness on many occasions for most of her life, she was always admitted to hospital as a voluntary patient.  I understand that wouldn’t happen now – less than three years down the line.  Nowadays I hear only people under sections are considered for a bed so, presumably, if you are considered unwell enough to warrant ‘sectioning’ (with all that that implies) you do not now have the option of going quietly.  As I said above, family are not always the kindest people to be around and I found that, progressively as the years went by, my fuse became shorter and shorter where Mum’s illness was concerned.  The effect on those in close proximity, who are trying to support someone extremely unwell, is cumulative and resilience is worn down over time.  Often the life of a ‘carer’ will suffer alongside that of the person being supported, because of the sustained pressure on both that the illness exerts. 

 

The Only Us campaign


'There is no them and us; there is Only Us’.

Only Us campaign


 

 

I have often marvelled in the past that we did have somewhere that would actually take Mum, and keep her safe, at the point at which I’d absolutely got to the end of my tether trying to do so myself.  For us, although far from ideal, hospital admissions saw Mum through the acute phase and gave me and my family a breather. They afforded me some brief relief and enabled me to reengage again.  For me the burden of the situation’s history always weighed heavily alongside current events, as it will do for most family members of the long-term mentally unwell, and I never had time to regain my footing between crises.  But I used to imagine being in a similar situation in America, or so many other countries, where there is no free healthcare and there is little choice but to endure this yoke along with all life’s other slings and arrows.

 

While ‘money’s too tight to mention’ for the health service now, it’s really encouraging to hear of crisis and recovery houses being set up in increasing numbers, and ‘street triage’ schemes – where a mental health professional joins police in a patrol car, and on the switchboard – being piloted in ever more areas.  If people can have their needs correctly identified, and be cared for, sooner money will be saved for sure – not to mention suffering and danger. 

 

There are also key up-and-coming campaigns, which have the potential to become social movements if enough of us decide to pick them up and run with them.  I discovered the Only Us campaign on Twitter about two months ago and was very taken with its simple but profound message: ‘There is no them and us; there is Only Us’.  Since then I have started encountering their 'Smiley Teary' badges and flyers around the place and really think this could become a powerful social movement and culture shifter, offering a very simple challenge to stigma.

Interestingly, I initially assumed that the ‘us and them’ referred to an attempt to bridge the gap between professionals and those who use services and their supporters, and also the traditional divide between the professions: psychiatrists and psychologists, psychotherapists and counsellors; between pay bands, and public and third sectors ... oh, and between medical people and laypeople.  Prejudice and fragmentation is still rife wherever we look. I gather these distinctions are embraced in the central message, anyhow.  It's a case of recognising that, in order to tackle stigma, prejudice and all divisive obstacles to harmony and progress, we need to regard ourselves collectively as ‘Us’ and, of course, to acknowledge that we all have a tipping point, anyone can cave in under enough pressure and if we’re humble, empathic and honest we will look at any situation with the recognition ‘There, but for the grace of God, go I’.

The trademark ‘smiley’ face with a tear, in my opinion, is as effective as it is simple - a brilliant, and subtle, variation on a popular theme.  It dovetails perfectly with the campaign among the major mental health charities to change images of heads in hands to those of smiling faces; that one tear shows that we all put a brave face on whenever we can, but that doesn’t mean it’s not hiding tears. 

I have visions of seeing people all around us on the tube, in the bus, in the park and the supermarket, wearing this badge and it being an ice breaker - a reason to say hello and engage straight away on a meaningful level with strangers, or even just make eye contact and smile a conspiratorial smile: to know we share a cause, as ‘Mental Health Warriors’ (a Twitter award!)  Something that makes us feel silently supported and surrounded by understanding.  I can see them really catching on in schools too and having a real effect in combatting bullying and enabling teenagers progressively to see that help is there for problems like eating disorders, self harm and depression.  I’d love to see a society in which they weren’t afraid or ashamed to not only avail themselves of support but stand up as ambassadors and peer encouragers as well.

The idea with the badges seems to be that you ‘pay them forward’ (that is, I give you one, you give one to someone else).  I was given my first one, and now I've bought 100 (for £25 inc p&p) to give out myself.  The flyers can be printed up and made available to interested people at events.  Further information can be found on here.    

I am increasingly finding that I’m able to do things that are quite simple which could have tremendous impact.  I feel so grateful that Mum is now on the level and content in a care home very close to where we live, and that I am still well and able to engage in life as an encourager.  When I was lost in depression, I used to intone like a mantra the hope that one day I’d be able to be ‘part of the cure, not part of the problem’.   I also had a card up on my wall that advised: ‘If you’re going through hell, keep going’!   Now I wear my smiley teary badge as a statement of my vulnerability and belief in the power of human connection.  I’ve learned that, paradoxically, our weakness can be our greatest strength, and that together we are stronger.

 

07/01/2015 13:30:09

Review - A layperson's view of 'Understanding Psychosis and Schizophrenia'

Why people sometimes hear voices, believe things that others find strange, or appear out of touch with reality, and what can help 


When I heard the British Psychological Society (BPS) had brought out this new report I was keen to read it.  My late brother suffered with years of psychosis and was diagnosed ‘schizophrenic’ in the late 1970s. 

Our mother had, a few years before this, herself begun suffering from extreme ravages of spirit – states of wild animation and frenzy alternating with the blackest despair (‘manic depressive illness’, as it was known then) – and my brother’s subsequent suicide at the age of 19 naturally exacerbated the family’s problems. 

Following the birth of my daughter, at the age of 37, I myself succumbed to life-denying depression and, after taking antidepressants, about fifteen years of apparently inescapable cycling illness. This was finally stabilized with the help of an exceptional psychiatrist, lithium and having learned my weaknesses and needs better.  So I am approaching this review from the point of view of someone who’s no stranger to the territory, with a keen interest in what the psychologists have to say.

At any time over all these years I’d have done anything to have been given a handbook like this!  An initially daunting 100+ pages of text is broken down into short digestible chunks of background, explanation and discussion and written in accessible, everyday language.  Each section of text is clearly and attractively laid out, with a summary of key points at the start, and punctuated by a wealth of personal stories and individuals’ reflections in green speech bubbles (for easy reference).  Space is used well; the text is not crammed tight. This makes the document easy and pleasant to read..

Understanding Psychosis
Anita Klein’s vividly coloured, fluid and beguiling cover and interspersed full colour plates whispered to me of enhanced experience, altered perceptions and perhaps transcending the veil between our ‘reality’ and the realm of spirit. I couldn’t stop looking at them. For me, set in this context at least, they reinforced the message that the experiences in question can indeed be very beautiful, enriching and life enhancing and are not destructive and frightening for all people - or, at least, all of the time.  More poignantly, they spoke of how things might be able to be for people who have heretofore been misunderstood if they were afforded the greater understanding and support of both their ‘healers’ and, critically, their communities.

 

 

I was a little sceptical when I read the claim that the report ‘provides an overview of the current state of knowledge (in the field)’, but after studying it in one long day’s sitting I have to say that – apart from finding it compulsive reading – I was impressed by the wide range of reflections and perspectives it offers, and the overview of, broadly speaking, ‘alternative’ approaches to therapy/support – i.e. alternatives to the medical model.

The authors’ manner of presentation is objective, matter-of-fact and in no way patronising.  Terms that could be seen as technical, or as jargon words, are simply translated immediately afterwards – e.g. ‘continuum = a line joining two ends of a scale’. You really get the feeling, as you read through, that great effort has been made to make the material universally accessible – to those who can read English, at least. 

We are encouraged to question concepts like ‘scientific fact’ and claims vis-à-vis research.  I particularly like the way the narrative jumps in to provide a down-to-earth example after every statement that might sound a bit far-fetched, obscure or confusing, as in this instance: ‘The way people make sense of and react to their experiences can be very important in determining how distressing and disabling (the experiences) go on to be. To take an example: if someone is sleep deprived or feeling anxious, and then hears someone walking behind them in the street, they might fear that the person is following them or about to do harm to them’.

A well-known profoundly deaf UK Paralympic runner with cerebral palsy came to do a motivational talk at our local deaf school. He told the children you need to become ‘the boffin of your own condition’, as then you win back the power to influence the situation and to change what you’re experiencing.  A survivor named in Understanding Psychosis reflected: “What was the point in fighting if I was going to be suffering from a lifelong brain disease forever?” But then after 15 years of psychiatric intervention, like me, she met someone who was willing to listen. This was the turning point.  She recalls: “I was able to break out of being a victim and start owning my experience,” and adds that she doesn’t see herself any more as ‘a psychiatric patient with an insupportable diagnosis’, but as an overcomer who has become an activist for change in the mental health field, now able to develop a range of coping mechanisms’.

The first four sections of the document explore the concept ‘psychosis’ and the next three look in some depth at potential causes.  We hear about new and interesting areas of research, like epigenetics – ‘the study of how parts of our genetic mechanisms are ‘switched on’, ‘turned up’ or ‘turned down’ by the things that happen in our lives’ – and neurochemical theories of brain treatment.  The authors are admirably restrained on the subject of the pharmaceutical industry and its historic, highly questionable relationship with the medical profession, conveying a single-minded desire for an across-the-board focus on positive change and less of one, at this time and in this context at least, on how we got to where we are right now.

We are told: ‘the report is intended as a resource for those who work in mental health services, people who use them and their friends and relatives, to help ensure that all conversations are as well informed and as useful as possible.  It also contains vital information for those responsible for commissioning and designing both services and professional training, as well as for journalists and policy makers’.  

After years on ‘the other side’, it is refreshing to see cultures in mental health care beginning to change and to understand here that, rather than playing lip-service to ‘person-centred’ approaches, these psychologists genuinely want to place information and the option of informed choice within the hands of the families who are suffering as the result of emotional distress/ ‘medical’ interventions.  Even to see those who use services mentioned higher up in their lists of intended recipients, just as drug treatment options are consistently considered last of all in the ongoing discussion, feels like a pleasing correction of balance.  One question I might ask would be how the document can be made available to those who don’t use services, or even attend GP surgeries, and also to speakers of other languages.  Self-help and education are just as crucial for such people and, as the genuine aim of the authors is ultimately to keep people from even needing services, this is an important consideration.

Understanding Psychosis is evidently designed to be dipped into repeatedly, and the material is readily accessible due to a really comprehensive and clearly laid out contents list. References are grouped by chapter at the end, along with a goldmine of websites to explore – first person accounts, service user/survivor websites, details of mental health organisations, and a bibliography with titles arranged under subject headings like ‘Psychological and social approaches to ‘psychosis’’, ‘Self-help organisations and the service user/survivor movement’ and ‘The psychiatric drugs debate’. 

Although the document is available to download, most of us find it difficult to read a large amount on a screen and it would be very expensive to print at home. Happily, it has been made available free either way.  It can be downloaded here: Understanding Psychosis and Schizophrenia or individuals can order a hard copy, one per person, by emailing membernetworkservices@bps.org.uk.  Mine arrived within just a few days.

This really is an excellent service the BPS are providing.  In my opinion this publication emphatically needs to get into the hands of the people, both the public and staff, who are grappling with the issues it addresses (both as comprehensive initial information and something to come back to revisit and dig deeper), and getting it out there is the stated aim of the team who produced it over a two year, inspired collaboration. It is head and shoulders above anything similar I have ever come across before; that it is being offered to non-professionals and professionals alike is a first, in my experience. I hope it will set a new tone.

We have generally been held at arm’s length by mental health services, and duped into thinking we’re being looked after by ‘experts through their use of scientific sounding words and concepts –  ‘surgery’, ‘evidence-based’, ‘clinical’ and so on – and by oblique suggestions in drug names - which strongly imply they will improve your competence or enhance your perspective on life, for example.  I believe this report will be a revelation to many genuinely motivated, but heretofore partially misguided, staff as well.

Naturally even key issues can only be touched on in a document of this size which has already been very ambitious in its scope.  The authors go on to discuss the myth that psychosis leads to violence explaining that, on the contrary – as a result of media hype, and our consequently fearful and prejudiced society – mental health service users are much more likely than others to become victims of violence.  The authors discuss the fact that more people are likely to develop psychosis if they’re poor and living in inner cities, and that the problem is worse in societies where there’s more inequality between rich and poor. The key role of hope is stressed, and that ‘it is vital that long-term, open-ended, high-quality support is available’. 

Apparently, up to 10% of the population hear voices at some point in life, and when hallucinating or hearing things is discussed in the context of sleep deprivation, for example, most of us might stop and wonder whether we’ve come into this category.  It is very interesting to read about bodies of influential research having been based on assumptions, and that only about half of clinicians can agree on a given ‘mental health’ diagnosis. What’s new is seeing this information in black and white, presented openly by professionals to patients and families!

Just as it stresses ‘experiences are on a continuum and don’t fall into neat categories’ the report itself feels refreshing and balanced, aiming to inspire questioning rather than offer slick solutions.  It’s always careful to qualify received value judgements when discussing them. For example, it follows the statement ‘It is widely assumed that psychosis has a biological cause’ with the reflection: ‘to date we do not have firm evidence for any specific biological mechanisms underlying psychotic experiences”.  We are also told: ‘our knowledge of what might have contributed, and what might help, is always tentative’ and ‘it is … important that we try to understand the full complexity of the person’s situation, and bring it together…, so that we can offer the most appropriate forms of help’. 

I was surprised to read: ‘The role that life experiences can play is becoming clearer … in other words, ‘bad things happen and drive you crazy’’ (my italics).  For me, the shocker is that such obvious facts have been officially ignored and progressively played down for so long - as the sway of medicalization became so powerful - that they apparently need to be restated almost as new discoveries.  But the exciting news is that the recent discovery and increasing understanding of neuroplasticity means we’re not necessarily stuck with the damage life has dealt us – it’s possible to change and heal, at least to some extent.

The relationship between spirituality and people’s positive experiences of ‘psychosis’ – or even the positive directions in life they gained from experiences that weren’t necessarily pleasant at the time – is explored in Section 7, raising the question that if altered states of mind can have value, what is there (in such instances)  to recover from?  Clearly some of the interviewees felt the answer to this question is ‘nothing’, but someone expressed ‘concern for the spiritual difficulties facing individuals entering the mental health system’ and the ultimate dignity issues encountered there, especially where someone is held involuntarily and subjected to compulsory treatment.  The psychiatric approach has traditionally been to try to control symptoms and ignore any content of ‘psychotic episodes’ (as ‘not worthy of understanding or capable of being understood’).  A survivor poignantly reflects: “We want to incorporate our insights into our lives, not to bind them in protective wrapping or carry them around with us as hidden baggage”.

Leading us into the What can help area of the report, section 8 introduces us to the concept of the ‘psychological formulation’.  It reminds us that ‘diagnosis in mental health is really a process of categorising rather than explaining experiences’, while ‘unlike a diagnosis, a formulation is based on the assumption that, however extreme, unusual or overwhelming the nature of the distress, ‘…at some level it all makes sense’’. 

The National Institute for Health and Care Excellence (NICE) has recommended that psychological therapies should be available to everyone who experiences distressing psychosis.  In reality, good psychological therapists are available to fewer than one in ten eligible people; far fewer in most areas.  Sessions with psychologists themselves are even harder to come by.  Ideally, Understanding Psychosis recommends solid and comprehensive support for the families of those suffering with psychosis and also touches on the non-directive Open Dialogue therapeutic approach which originated in Finland and is gradually being adopted in the UK. This methodology requires that all decisions are made communally in meetings. Strikingly, fewer than a third of Open Dialogue clients are prescribed neuroleptic drugs. 

Section 9, Self-help and help from families, friends and communities emphasises the valuable, sometimes critical, need for sufferers to combat isolation, find acceptance and peer support. The related concepts of ‘recovery’ and self-help (perhaps using structured plans) are discussed here, and this leads on to the authors stressing the importance of receiving sensitive crisis care and, where possible, early intervention.

The absolute need for crisis and recovery houses in all areas is stressed, alongside issues of compulsion, deprivation of liberty, power and trust, and the fact that our government is failing to uphold ‘the basic ethical principle of reciprocity’. That is, just as we are legally obliged to comply with programmes of treatment or ‘care’ the authorities should be held under a parallel obligation to provide safe, appropriate services, including after-care.

Reflections from both historical giants - for example, Edgar Allan Poe and John Stuart Mill - and from contemporary high-profile sufferers, for instance, boxer Frank Bruno and Clare Allan (a former inpatient and author who writes The Guardian’s ‘It’s My Life’ column) punctuate the document, alongside references to the pioneering work UK mental health charities are doing – for example, Mind’s seminal Learning from Experience report (2011). 


The authors’ impressive command of both historic and contemporary thought and opinion is amply displayed as they survey ‘the contested area of mental health’, discussing individual survivors’ comments and international, timeless perspectives alongside the current, influential guidelines of policy makers such as The Health and Care Professions Council and NICE.

Section 10 acknowledges that ‘emotional support and help with practical issues such as work and employment, benefits, housing and relationships is often as important as help targeted directly at ‘symptoms’’.  It emphasises that our basic needs must be met first and foremost, and looks at our need for emotional support and for protection from self-harm (but also, for autonomy; a challenging conundrum).  A subsection actually acknowledging in its title the ‘Risk of harm from services’ concludes: ‘A more sophisticated approach is badly needed’. 

The recovery model, focussing on reducing distress and ‘helping people to live the kind of life that they want’ (inasmuch as possible) ‘whether or not the experiences continue’, is touched on, and we discover that one of its key tenets is that mental health workers don’t insist that people ‘see their difficulties in terms of an illness’. 

Section 11 moves on to discuss in some detail the various ‘talking therapies’ currently on offer in some parts of the UK.  It insists: ‘It is vital for people to be able to talk and think about their experiences in a calm, supportive and non-judgemental atmosphere.  This underpins all forms of helping’.

I was interested to discover that there’s a special version of CBT – CBTp – designed for people who’ve experienced ‘psychosis’, and to read about voice dialoguing, avatar therapy, cognitive remediation and narrative therapy, among others.  I also like the idea of radical collaboration (even just the name!), although for me the shocker is that the understanding of the human condition that we all possess when it comes to our families and our friends, somehow went out of fashion in the ‘healing’ arena.  It reminds me of the way that people can observe animals in evident emotional pain and yet insist that they don’t have feelings.

There would need to be a major reallocation of current health spending in order to sufficiently fund the report’s proposals. The range of services would not be cheap, as person power is one of the most costly resources, and psychological support offered with integrity would, by definition, need to be potentially open-ended. 

However, it is always expensive to install new infrastructures, and it seems only logical that further downstream a healthier, more mutually-supportive community with reduced sickness and more of us in secure employment would cost less to sustain.  Even in the current set-up, adjustments in perspective, focus and attitude can be made, but ultimately the authors stress: ‘we need a culture change in services such that the psychological understanding described in this report informs every conversation and every decision’.

Discussing medication, it’s acknowledged that many people find antipsychotic medications have some uses (although their effect tends to be general rather than specific, and they produce ‘additional effects’ along with the useful ones), but the risks and benefits of each proposed medication regime should always be carefully weighed up especially where people are parked on pharmaceuticals, or drugs are juggled and changed over long periods of time.

Personal remarks captured here betray varying experiences and opinions. One man reflects that he feels through the medication he has ‘been given back his life’. However most others, even where some benefit has been gained, seem ambivalent at best.  Someone forcibly injected under constraint muses: ‘in losing periods of madness I have come to pay with my soul’. Others echo this sentiment saying the drugs can make you so doped up you hardly feel alive. One lady’s words seemed to sum up many peoples’ experience: “Illness was scary, but not half so scary as its so-called cure”.

Understanding Psychosis is a well-written, systematic and passionate document that is based on reasonable observations and assumptions.  It is remarkable in that the authors manage to present their emotive material and ideas so objectively. To me, this betrays more than anything else their sincerity and belief (informed by their professional discipline) that the urgent need for systemic change and a shift in our collective consciousness is the only way forward to greater well-being, both personally and as a true community in the future. 

Personally, I was convinced of its validity and importance before I got to the rallying cries calling for a sea change in services, commissioning, professionals’ attitudes and practice, and ‘the replacement of paternalism with collaboration’. But I was further impressed as its authors deftly wove together all the strands introduced in the main body of text into their impressive concluding statements.

Beginning with an alarming but beguiling extract from a named survivor’s heart-rending, fictionalised account (where a woman, who ‘in desperation ... seeks asylum in a place that is meant to provide sanctuary for her’ is devastated when her terrifying experience there ‘nearly drives her over the edge once and for all’), the final section of the document, What we need to do differently, is split into two parts: What mental health services … and, What we all… need to do differently.  

I like the way that the authors end by charging professionals (including all psychologists) directly with the task of taking action to redress the imbalance by adopting a different perceptual position; to shift from assuming a sense of superiority and perceived ‘expert’ status - from ministering to ‘the diseased’ - to ‘seeing [themselves] providing skilled help and support to people who are experiencing understandable distress’.

So the text concludes with a focus on the principles of mutual respect, a genuine concern for dignity and the need for services to be informed by basic human kindness and common-sense.  This is based on the deep understanding that we need to meet human expressions of distress and pain with human responses in order to make healing, and true integration in the community for those with unusual experiences, a possibility. 

 

Understanding Psychosis and Schizophrenia, The British Psychological Society

Edited by Anne Cooke

A report by the Division of Clinical Psychology


10/11/2014 16:31:08

The Expert by Experience fraternity


Disintegration of life as I knew it, then recovering sanity amongst the ‘Lived Experience’ fraternity

Things turned around for me almost overnight when one day I stumbled upon the concept of ‘Lived Experience’.  I discovered I was an ‘expert by experience’, and learned that government-led initiatives increasingly require statutory healthcare providers to work with the ‘end-users’ of services as advisors: that is, as service user/patient and carer consultants.   Many universities, charities and other voluntary organisations and non-government organisations do so too.


Lived experience
In an anomalous situation personally (I’d learned a great deal in three years of NHS service but had been obliged to resign my position because of ill health and family pressures) I had been despairing about my employment future.  Following a wretched period of hopeless ill health, in which the cumulative pressure of long years of caring had weighed in with all the other strains and stresses of my life up to that point, an item on a leaflet I picked up at our local Carers’ Centre support group led me to attend a presentation explaining how lived experience experts can help in research projects. The germ of an idea was planted.

 

Fast forward about a year and, once I’d submitted a few initial applications, one thing led to another.  Before I knew it I was working casually for four large organisations just for a few days here and there, but these start to add up.  Apart from bringing in much needed funds, I found that what I was learning was growing exponentially.  I started to realise there was a genuine possibility that I would be able to have some real and lasting influence for positive change through work I was taking part in - that I have an opportunity to help redress wrongs, and enable healing to begin, in areas which still feel like an open wound to me; to find some resolution of past suffering whilst doing my best to contribute towards improving things for us all for the future.

Part of effectively recovering from mental health challenges, and staying well, consists in genuinely learning our limits and being able to construct a new kind of lifestyle, keeping those limits in mind.  One of the hardest things with a chronic condition of any sort is evaluating what is and is not going to be possible from now on and then sticking to that; trying not to compare life as it has become with what it might have been had one’s health not become permanently compromised. 

In my case I now know that anything more than a three day work week would start tipping the balance and seriously threatening my equanimity – that is, three days out at work, especially at set times and/or involving travelling as well.  An arrangement that works for me is using any other time that is left over in the week for writing, computer tasks and paper work, meeting individuals and making phone calls – things that can be done without compromising my natural rhythms.  Such realisations and adaptations are key, especially for people whose inner balance has been seriously challenged and where there’s always the latent threat of relapse or cycling illness (as in my case) – relentless repetitions of the same destabilizing episodes, months of frenetic energy followed by seemingly never- ending months of impossible despair.


Now I know that this ‘better than well’ feeling was not a signal that I was back on course, able to consign disturbing memories of illness to the past and move on, but a legally prescribed high...


When I did become very unwell myself, my caring obligation really did degenerate into a case of the blind trying to lead the blind.  Each of us has to strike a unique balance between the need to earn money to pay the bills, our strength, stamina and state of health at any given time, our duties and the stresses of our lives outside work.  When we are required to watch out for, and to support - sometimes making complex decisions with or for - another it is even more crucial that we get the balance right, if we can... 

MedicationI had in reality been unwittingly handicapped for years, my personal research has now enabled me to understand, as I had been given SSRI antidepressant drugs for postnatal depression. These were increased to a double dose when the depression began coming back as strongly as ever, and subsequently I was prescribed an SNRI (Effexor) which is often given to people who have suffered several previous episodes of depression where current medications don’t seem to be working. 

Things were moving up a scale of heavy-duty-ness and toxicity, and the message I internalized was that I must have had a serious mental health problem all along to be feeling so rock-bottom, gut-wrenchingly low when already on a double dose of new-generation antidepressant drugs which I personally rate as somewhere between Class B and Class A potency (if they were to be classified in the same way as street drugs).  If I felt as bad as I did when I was taking nothing, I must be really sick, I reasoned.  The spectre of a chemical lobotomy and mental hospitals, which I knew about all too well, haunted me in addition to my other burdens and fears.

 

Paradoxically, it is frequently remarked that such pharmaceuticals are handed out like sweets by GPs, and because studies show they are little more effective than a placebo in addressing many cases of depression they are commonly regarded as fairly innocuous, even fairly ineffectual.  What is not routinely discussed, though, is the fact that they indisputably have very definite effects on many aspects of an individual’s functioning making some highly anxious and irritable, others sedated and lethargic and yet others ridiculously charged and energised – often a mixture of these, in different moments and phases.

Over fourteen years I started and discontinued this ‘medication’ routinely, as I came out of each low period believing it to have been an isolated episode and that it would never happened again, I usually cut down gradually once I understood it was important to do so (though there were times when, as I shot out of the cloying dark cloud on a wave of exuberance, it felt utterly counterintuitive to let any more of the powerful chemicals pass through my lips).  I felt like ‘myself’ again, but propelled by tons of rocket fuel. 
 

Now I know that this ‘better than well’ feeling was not a signal that I was back on course, able to consign disturbing memories of illness to the past and move on, but a legally prescribed high which was simply the upside of the inexorable cycle that would soon enough, once more, drag me back down by my hair into the thick, black mud below. 


I am telling you this story because I wonder just how many other carers, and people in general come to that, have been put on strong pharmaceuticals as a ‘Band-Aid’ when crumbling under stress, increasing pressure of all sorts, massive overload and feelings of overwhelm in situations where there’s no adequate support for them themselves, nor others around to share an intolerable load.  I wonder if they, like me, have similarly been effectively left to figure the way out of the labyrinth themselves.  Yet the ‘depressed’ and anxious feelings they exhibited were appropriate feelings given their situation; within the range of ‘normal’ human emotions.  I’d love to hear back from others about this.

For me, progressively, a pattern developed that was almost like a pendulum swinging although I have always found the current clinical description of the experience as ‘mood swinging’ unhelpful and misleading, because it’s reductive in the extreme. I have already discussed (in Beginning to redefine terms) why I don’t like my entire concerto of inner emotions, thoughts, intuitions, aspirations, hopes, beliefs and so on deconstructed by someone’s simplistic, subjective hunch that I feel a certain way: it’s my ‘mood’.  ‘Great ravages and flights of spirit’ feels like a truer description of what I experienced, to me.  As far as ‘swings’ go, this small word prevented me from getting any further in my Google pilgrimage to find out what was wrong with me and what I could do about it for additional desperate months and years.  Meanwhile I tried dipping into forums on sites like Big White Wall and Black Dog Tribe, but found material that further unsettled me there and nothing that could help me find any more clues.

I’ve privately called Google ‘The Oracle’ in my mind, and have often amused myself with the idea that the answer to Life, The Universe and Everything indeed might be there.  But the catch is you have to ask the right question!  In fact, you have to include the right word.  I’ve learned through doing research of various kinds that one bit of study will tend to lead to the next – you see something you want to look up, or eventually something different catches your eye.  In this case, something else I read led me to enter the word ‘cycle’ and suddenly I was into a brand new seam of information; rich, unplumbed depths opened up for the digging.

In short, I discovered concepts like ‘rapid cycling’ and the ‘kindling hypothesis’ and learned that lithium, the drug of choice for people who are the first-degree relatives of someone with bipolar illness, is a natural substance that has been used for thousands of years to treat mental illness.  The American Indians used to bring their sick to bathe in the waters at Lithia Springs, situated in what we now call the state of Oregon.  Sadly it does not work for everyone, but miraculously for me it proved to be the magic elixir I’d given up hoping for after decades of just about coping; barely surviving.

Mum and I had both begun rapid cycling.  That is, lurching from an unnaturally energised phase (which for her meant psychotic mania; for me, driven but chaotic excessive activity) to the inevitable crash into the gaping black hole.  I had been her main carer for twelve years since my father died.  Of course, I had supported them both before that. Mum’s illness had loomed large almost all of my life and Dad had needed palliative care on and off for the last five years of his life.  But I hadn’t myself experienced depression to the extent that it got in the way of my ability to live and work until soon after the birth of my daughter.

I now understand that successive episodes of ‘highs’ and ‘lows’ exacerbate further ones, so the mania or hypomania becomes wilder and the depressions deeper, more wretched and desperate. Mum had been getting more unwell by turns again and at this time for a period of three successive years she was admitted to a psychiatric ward regularly every six months or so, but not before my nerves were worn ragged by her public disintegration out in the community.  This had pushed me to my limit. 

Conversely, depression descended on me as regularly as it did on her, its advent all the more chilling because I knew it never lifted again in less than three months – tablets or no tablets.  I never knew whether it was my psyche muscling in each brief interlude when Mum was less unwell, thinking ‘it’s my turn to fall apart and take a break!’, just sheer exhaustion from what we’d just been through again or because a pattern had become deeply grooved in my neural pathways and it was just that time: like when an alarm clock’s hands hit the moment it’s been set for and its insistent ring is activated automatically.

From then onwards, anyhow, we ricocheted around, Mum’s heightened sensitivity being immediately aroused by my dejection and pain.  You can’t hide the way you feel easily from people you are close to, and I know Mum felt extra upset to realise that the strain of having to look after her on top of everything was grinding me into the ground and that there was nothing she could do about it.  The interplay was cruel, my collapse triggering her psychosis, which pushed me right to the edge; as I emerged, gasping for air, Mum would be leaving hospital in an impenetrable depression, reflecting back to me where I’d so recently been; needing a constant injection of energy I just didn’t have.  But I would give it anyway and then, as she tentatively sent out exploratory green shoots of new growth, I would disintegrate again.

I had tried cognitive psychology over the years, but as time went on I realised that for this sort of illness the answers don’t lie in that direction, at least for me.  Only today, I saw a leaflet at the GP surgery that said ‘LIFT: Let’s work it out’.  I can’t help feeling it’s a rather cynical offering, the acronym standing for ‘Least Intervention First Time’, especially when old hands are sent along – it seems this is really the only psychological service on offer in most places – just the same as newly intercepted sufferers, with the suggestion they do things like work on their ‘rigid thinking’.  Isn’t it really a way of saying “you’re the problem.  If you’re not getting well, you can’t be trying hard enough.  The responsibility for getting well again is yours”?

I’ve had a go at trying to analyse my way out of the predicament.  I have a library of mental health books.  I did a year of postgraduate studies, specialising in mental health.  My idea was that I would read the subject inside out, learn everything there was to know about the beast that had oppressed my family and hijacked my life – to finally become able to name it: what it was and what it wasn’t; that this would give me the power to reclaim my life course.  But no …it wasn’t going to be as simple as that.

Mum and I both levelled out from the cycling at the same time.  It happened partly by chance, because she was allocated a new psychiatrist and Care Coordinator as part of the service reorganisation in our area.  At the time she had just been discharged from her latest hospitalization, and I thought, “Great! Perfect time to make changes! ” But it worked out perfectly. 

As a result of the first truly collaborative care team experience we’d engaged in, involving nuanced changes in medication and sensitive and swift responses to developments, Mum has been in remission from bipolar cycling ever since – for over two years now. 


... once I found my feet in the lived experience camp I suddenly found I knew others with whom I could mull over challenges and share concerns, passions, opinions and aspirations.


Because her psychiatrist earned my trust and respect, I was able to discuss my own predicament with him and to take the difficult decision to try lithium.  I have now discovered, from reading around the subject in preparation for this major step, that this drug (which, as a naturally occurring substance, is unlikely to make big bucks for the drug companies) should be offered as the initial medication option to first degree relatives of anybody already diagnosed with bipolar illness.  Antidepressant tablets hold the extra danger for those of us who fall into that category of kindling bipolar cycles and completely altering the course of our lives.  When you see it like that, it’s a big ethical responsibility.  However I wonder how many GPs know this, or have thought about it like that.

Medication issues aside, a key consideration for most of us in recovering, healing and staying well is being part of thriving and supportive social networks.  We tend to find that the more we get involved in an area of interest - sharing a passion, hobby or conviction - the number of people we know who have similar concerns or interests grows. 

The old adage ‘it’s a famine or a feast’ came to mind in my case, as from knowing very little about and having been habitually confounded by NHS systems - feeling lost, adrift, powerless and isolated - once I found my feet in the lived experience camp I suddenly found I knew others with whom I could mull over challenges and share concerns, passions, opinions and aspirations.  Not only this but, if necessary, I realised I could count on these people for support, and be there for them as well; that my own perceptions and abilities to express myself in the field had matured and sharpened too, and I had become qualified along the journey to advocate for others should that prove necessary.

 

11/11/2014 11:56:39

Finding help and support out there

'Loneliness does not come from having no people around you but from being unable to communicate the things that seem important to you'

Carl Jung
 

Before, no one really asked or showed any interest in the health of the person supporting another with serious mental health problems.  Nowadays the authorities appear to: we have … the Carer’s Assessment.  However, as no one is apparently obliged to provide the help and support that an assessed individual might be deemed to warrant, the opinion among the caring fraternity seems to be pretty much that it’s not worth the paper it’s written on.  

Then there’s this year’s Care Act.  In Factsheet 8 of this document Dame Philippa Russell, Chair of the Standing Commission on Carers, states:  

At last, carers will be given the same recognition, respect and parity of esteem with those they support. Historically, many carers have felt that their roles and their own  well-being have been undervalued and under-supported”.  

She concludes by commenting that, as a result of the Bill, now we have  ‘the  opportunity to be truly acknowledged and valued as expert partners in care’.  Yes, but we wonder how is this opportunity to be optimized?  Dame Philippa herself talks of  the Care Bill marking a ‘quiet revolution’ in attitudes towards, and expectations of, carers.  

For most of us, it simply seems as though the government is seen to be acknowledging our existence and seeming to be doing something – that’s all.  Whether or not it’ll translate into significant changes on the ground remains to be seen.  It’s a step in the right direction, to be sure, but we’re not holding our breath. 

Since 2010 we have also had the Triangle of Care, which we hear more and more about – a ‘guide to best practice’, which sets out formal structures to attempt to ensure that people behave in the inclusive, respectful, considerate and courteous manner we might have expected them to do in the first place … as they would, say, with a wife who is accompanying her husband to cancer treatments, tending and supporting him, or a mother who cares for her grown up child who was injured in an accident or is physically disabled.   


...it really is essential that we plug ourselves in to sources of support and nourishment if we are to give ourselves a decent chance of continuing to function well. 


It does seem as though, more and more these days, training is presented prescriptively, in the form of set structures – e.g. tables that need filling in and ‘models’ to be replicated.  Some people must be able to learn this way, but it’s certainly not for all of us.  A change in culture is what we need, and to my mind attitudes are only going to be truly revolutionised by a change in our collective consciousness and inner understanding.  

There needs to be a recognition that, as a colleague of mine succinctly put it, “the carer holds the story” so often where mental health clients are concerned.  There is a wealth of information in that short sentence.  Perhaps a training session contemplating all the truths contained  in it – not least, the mutual benefits across the care team – would be a powerful exercise for professionals and carers together to engage in. 

In some areas of the U.K. nowadays we have a new phenomenon, the Carers’ Centre.  For the carer who has lots of time on her hands and - ideally – transport, who feels sociable and is able to get out on weekdays, it’s possible to join art, craft, walking and other exercise groups; to garden with others, enjoy massage and sometimes engage in counselling; to attend healing days, some training, go on evening outings with others and so on. A lot of this works better for women than men, which means the average man is not so well catered for.  Our local centre is branching out more all the time, however, with a ‘Memory Café’ (addressing memory issues in a relaxed, social environment), support groups, advice and training for getting back to work,  support for young carers, daytrips, and invites to carers to input into what’s on offer, to make sure it’s what’s really needed. However, all of this activity depends on people having time, energy and the inclination and ability to come out and get involved, join in and forge connections.   

Carers’ Centres can sometimes pay for transport and offer replacement home care to give a carer a break. Befriending can also be provided for someone who can’t get out, or needs one to one more private support.  But this does not constitute expert professional support and advice, and for the person miraculously keeping together a nine to five job in addition to family and caring duties there is still effectively little on offer, to my knowledge.  

In general, it seems that practical help with the really challenging questions, issues and tasks is much harder to come across, and some of the best advice and information can come from meeting with other carers at events, forums and peer support groups. This is an important thing for carers of others with any condition to do, but can be particularly valuable, and vitally important, to carers of those suffering with mental health challenges and emotional distress. 

Bipolar disorder
My mother was diagnosed with manic depression at the tender age of thirty one.  My father was away a lot with the Air Force, and at those times Mum had sole responsibility for two children still under ten. Her son (my brother and only sibling) took his life at the age of nineteen, less than a decade later.

In the early days, starting when I was only eight years old, Mum's ‘breakdowns’ were devastating and extremely turbulent, followed by prolonged periods of profound depression while her body and mind were recovering from the excesses of psychotic mania.  But at least then there were usually long gaps between the episodes … sometimes years at a time.  

Following my father’s death 18 years ago, and a change of medication, she began to experience very regular instances of rotating ‘highs’ and ‘lows’ which settled into a pattern of ‘rapid cycling’.  She ended up being hospitalised pretty much every six months for a number of years and spent most of the time in between locked in bleak, debilitating depression. 

As a mother myself trying to cope on my own and run my small business, while my own daughter was still in infant school, I also used to bring Mum to stay at our cottage each time once it became clear that she was becoming delusional and really unbalanced … again – not knowing what else to do.  The crises rattled round in a seemingly inexorable cycle.   

In those days I had no real idea about how to get help.  There weren’t crisis or home treatment teams ten years ago (or if there were, we hadn’t been told), and I was endlessly leaving messages with secretaries and waiting to be called back.  I knew of no support groups and was too maxed out to have been able to consider attending any anyhow. 

There was no real continuity.  The setup seemed very hierarchical – the mental health trust held the power and kept everything very ‘professional’ (read: ‘at arm’s length’).  I seemed to have to try to prove each time that Mum had become unwell again, and she had to get extremely ill in order for this to be established.   

Not being believed or really heard is a heavy yoke all mental health carers have to bear for varying proportions of time, and most of us even begin to doubt our own sanity at times and wonder whether it’s the other person or us who has the problem.  When the story and the goalposts keep changing it’s even harder to keep your bearings.  

With bipolar disorder, and other psychotic illnesses, perceived reality weaves itself up and down, inside out and round and round, like a rollercoaster ride through a hall of mirrors. The mercurial fluctuations mean that there’s always a new twist to anything you thought you knew, understood or could rely on, and the manipulative nature of the imposter personality that can come to inhabit the body of the person you otherwise knew, changing her way of speaking, vernacular, facial expressions, body language and mannerisms really does bring to mind Dr Jekyll and Mr Hyde.   

Attempting to deal with psychosis puts an almost inhuman strain on anything you are attempting to maintain in the rest of your life. But being around a deeply depressed person – the other side of the bipolar coin – is similarly debilitating, and challenging in a totally different way.  The onus is now on the supporter to be the arranger of outings and distractions and the constant giver of energy and encouragement, regardless of the fact he has just been subjected to the surreal trauma of his loved one’s psychotic breakdown and the cumulative pressure of the chaotic cycling, which will often have been going on for years on end.   

At such times, the mental health services tend to withdraw to a large extent, as their patient is no longer causing trouble or making a noise about anything.  The challenge in this phase is to maintain their interest in providing input of some sort and reminding them that almost total withdrawal from the world is no kind of life; that visits and moral support, and the maintenance of continuity at least, are still appreciated (by the carer as well).  Also, to really take on board that you can’t keep up the cheerleading yourself 24/7; that the pressure is bringing you down too (particularly if you have ended up contracting mental health challenges yourself, as so many of us go on to do). 

I’ve heard us described as ‘the sandwich generation’ these days, with our parents living so much longer and many of us having children late.  We have to nurture and support both young and old at the same time, and where there are health problems either end of the equation we are bound to start feeling the strain.  We have much more to deal with, in that sense, than people in bygone times, where our society is so much more fragmented and individualistic and we are now all expected to be autonomous and resilient, regardless of the burden we shoulder. 

So it really is essential that we plug ourselves in to sources of support and nourishment if we are to give ourselves a decent chance of continuing to function well. 

With the internet now so widely available it should be possible for many of us to identify likely-looking local groups and services, but information isn’t as joined up as you might imagine still, and stressed and unwell people tend to withdraw into themselves and aren’t as able to calmly search and identify help.

Those who don’t use computers are even more vulnerable to isolation.  Local peer support groups and informal friendship networks would probably be the greatest help, and safety net, for these folk.  Sadly, those starting out as carers still seem to have to embark on the journey almost from scratch where they might easily be identified and personally introduced straight into supportive networks and connected with the relevant organisations.  It is my hope that this blog might progressively help give anyone in this position tips, shortcuts and the confidence to explore local support opportunities. 

If the sort of group you’d ideally like doesn’t exist in your area you might consider setting it up together with a few others. Something informal which starts small is often less intimidating to newcomers and if it’s somewhere public no one has to prepare or clear up, and you can leave when you want.   

It only takes two to get something started.  A friend and I started a small, informal drop-in group at the pub up the road. I wanted to do this because, when I came out a period of depression and isolation, I didn’t want there to be a single other person around feeling the way that I had felt and not having anywhere to go for unconditional acceptance, support and solace.  

Sometimes, even if you don’t feel okay to talk much yourself, just being able to be within a safe-feeling situation (with just one other person or sometimes, maybe, a few more) to take in what others say - being there, but not there, like a fly on the wall - is all you need.  At times, it was very hard for me to go along but I trusted my friend and going out, getting a change of scene at least, almost always helped.  Through this I discovered that when the answer does not seem to be out there, we can sometimes – in our stronger moments – create a solution ourselves.  This in itself is empowering, I’ve found. 

01/10/2014 10:19:32

How I began to find help, sadly a bit late in the game


Caring doesn’t take place in a vacuum – if only.. ! 


I’ve been a ‘carer’ – to varying degrees – for forty five years, but I didn’t realise I was one until a decade or so ago when the concept started to be popularised. 

 

When I was 8 my granny (whose flat we were staying in while my dad was away on an Air Force assignment) bought me a nurse’s uniform, and told me I was to look after my mum, who was sharing her twin-bed spare room with me.  I was puzzled by this, because my mum didn’t look ill – indeed I was the one with a stomach ache and the doctor was coming to see me, wasn’t he?  It’s true Mum was making some strange remarks and talking very intensely sometimes, but at others she was still acting like a parent and seemed fairly normal.  I was confused.

 

The following summer I came back from a week-long camp in North Wales to find no one from my family to greet me at the train station.  A school friend’s parents took me to stay at their house.  The girl wasn’t an especially close friend, and was spiteful because I was vulnerable and on her territory. This can have only been for a week but felt like a month to me, and I’ve never come back from trips away since and not felt anxious about what might have changed in my absence. 

 

In my teens I remember going into the downstairs loo and spontaneously throwing up with worry when Mum was still not home more than an hour later than I’d expected her.  When I was fifteen, at boarding school in Oxfordshire, I’d know all was not well either when I received an envelope in my dad’s meticulous handwriting (it was the only time he ever wrote to me) or a letter in a large and shaky version of my mother’s distinctive script, including mysterious symbols (“ written in code”, she’d inform me later).  At such times, I’d know Mum had been taken into hospital for a period and I’d get a dull, sick feeling in the pit of my stomach.  Of course in those days (the mid-1970s) there was no one I could talk to at school about my fears and feelings in general.

 

How I began to find help

 

'... This felt like the most intoxicating freedom and I realised fully how tightly every aspect of my life had been tied in with Mum’s fluctuations'


 

 


Okay, at that age I wasn’t directly doing the day-to-day caring that many young carers have no choice but to do.  Realising that my parents’ tempestuous relationship regularly exacerbated the situation, though, I used to feel responsible for trying to keep the peace in our home and got into an early habit of ‘caretaking’ (putting my concept of the family’s welfare before my own).  I’d feel I always needed to be in the public rooms, ready to crack a joke to defuse the atmosphere or to appeal to the others’ more reasonable natures.  As a consequence of this I have difficulty to this day prioritizing my own emotional needs, being clear with boundaries and indulging in healing solitude.  I still tend to allow myself to be carried off on the tangent of what I perceive the needs of those around me to be. It seems that many carers have this problem.

 

Family and friends have commented that it must have been hard having never had anywhere to really lean, and having felt the responsibility of effectively having to ‘mother’ my own mother from an early age.  It has certainly been tough at times.  When my dad was diagnosed with terminal cancer in 1990, Mum and I both became carers for five years.  I ended up moving in with my parents pretty much for the last year of his life because the situation required full-time, hands-on help, as anyone who has enabled a chronically sick person to die at home will know.  Mum did fantastically, but naturally needed a carer herself to enable her to cope.  My two grannies, in their late 80s, lived within a mile of us, one in sheltered housing and one in residential care.  They also needed problems solving, transport to appointments, errands running, shopping and, of course, visiting.

 

All this time I was also trying to run my small business, cook proper meals, walk the dog, ensure the plants stayed alive, save two gardens from becoming overgrown and so on.  It was crazy, dashing about doing all these diverse tasks, occasionally visiting my own home 20 miles away. My work destination was fifteen miles from my parents’ place, so the journey there and back comprised the short side of the Isosceles triangle that connected my two homes.  No wonder the concept of relaxation seems alien and comes very low down the priority list in such situations!  Just as you realise that if you ever started crying you wouldn’t be able to stop.

 

As I read back over this, it looks like a lot to have had to deal with and as though I might have exaggerated some of it.  Other carers will recognise it as just a matter-of-fact account of my experience of the type of situations we all somehow largely manage to deal with much of the time, and circumstances we all have to juggle.  At the time you simply get on with whatever needs doing, and that then becomes life as you now know it. Caring doesn’t take place in a vacuum – if only …! 

 

When my baby nearly died 18 months after we lost dad, and Mum started having a breakdown I thought “Not this again, please!   I need to be a mother to my own child now.  I can’t cope with it all”.

 

For the first ten years after dad’s death, I struggled on pretty much alone as Mum’s main carer, now with a child of my own.  It was, in fact, only when I remarried that I was able to care for myself enough to allow mum to go into a private hospital rather than grinding myself down to beyond breaking point by taking all the strain, having her to stay with us in psychotic states, etc. 

 

The decision that things had to change started to come about, really, when I felt I simply had to keep my seriously unwell mother apart from my daughter – who had hit the significant age of eight herself – and I did my maths and realised I had been dealing with Mum’s illness centre stage for thirty six years of my life.  She was starting to say the same sort of strange, confusing and frightening things to my little girl now, and I suddenly realized that I had to draw a line under it all and take some steps in damage limitation.

 

Having realised the BUPA policy from Dad’s work Mum had historically held would cover her for crisis care at The Priory, we got away to Wales for a week in a caravan just weeks after our wedding. The excitement, as ever, pushed Mum over the edge tinging the occasion with the customary bittersweetness.  This felt like the most intoxicating freedom and I realised fully how tightly every aspect of my life had been tied in with Mum’s fluctuations.

 

But though we didn’t realise it at the time, having had Mum looked after privately complicated everything and we weren’t offered the same support post-discharge as we would automatically have been if she had been taken into hospital through state-funded channels.  Things didn’t sort out overnight.  Mum was finally awarded a Care Coordinator soon after this, but following several semi-stable years he was taken away.  I have a folder full of the letters I wrote to the Chief Exec of our local mental health trust that year representing Mum’s ongoing need for a therapeutic relationship with a secure keyworker, all to no avail. 

 

That Christmas Mum suffered the most almighty breakdown and because relations between the family and the trust had broken down to such a degree we once again had to have her staying with us until the GP surgery reopened on December 29th ; up all night doing goodness knows what.  All I could manage was for us to be in the same house, to keep Mum safe. Thank God my husband was there with us, prepared to take on more than his share of the load. He took on the role of carer for both of us then, not for the first or last time.  I had by this stage of things become almost unable to deal with Mum at all when she was in this state; it felt like having a stranger in tow, even an enemy. 

 

This was an all-time low point again after a few better years, and I held the short-sightedness of the trust’s managers and its budget driven ‘discharge culture’ responsible.  Yet the care team in the local NHS facility proved to be thorough and constructive once Mum was finally brought to our local psychiatric unit (although her week somewhere else first had definitely made things worse) once they’d got the measure of the situation, and a Community Psychiatric Nurse was duly reinstated in our lives.

 

Since then in impending crises I progressively got better about asking for help, knowing who to ring or email and where to look, but it’s taken years of experience to begin to work this all out.  I nowadays take the attitude: “If you don’t ask, you almost certainly won’t get help.  If you do, someone just might say yes.  It’s always worth a try!”

 

 

 

17/09/2014 09:59:27

Warning: Care in the Community

... can damage your health

Along with the voluntary sector, charities and other non-government organisations (what is now known to the initiated as ‘the 3rd Sector ‘ i.e. public, private and … third), those of us who ‘care’ for others prop up our society and paper over the cracks the government’s austerity measures perpetually create and exacerbate.  We provide the ‘Care in the Community’ that Margaret Thatcher cynically envisaged and are a cornerstone of David Cameron’s ‘Big Society’, ironically spawned not by his vision but because of his government’s removal of state-sponsored safety nets and many established avenues of support, in an environment that has an increasing dog-eat-dog feel to it. 
Care inthe community


We can’t turn back the clock or beam ourselves up into another reality, much as we might like to... but we can start to do things differently.


 




As far as health and social care are concerned, ‘the system’ – a phrase broadly used to describe what’s on offer from the statutory services, I suppose – relies heavily on all that’s done by the unpaid workforce behind the scenes (… us!).  But it hasn’t traditionally acknowledged, consulted or invited that workforce’s innumerable, often unrecognised, members into the teams that are making potentially life-changing executive decisions about its family members and friends.


When you are supporting another person to a significant extent, you can tend to lose your perspective on the situation; you can get so used to coping that you sometimes don’t notice that the other person’s condition has deteriorated so much that you’re now dealing with a very different proposition.  I don’t think many people choose to be ‘a carer’; you just find yourself in a situation in which one is needed, and you look like the likeliest suspect. Then, if you’re a certain type of person, you stick around rather than making yourself scarce.  Along the road, though, you tend to become depleted by the process – well, the energy needed to keep someone else’s life together is bound to take its toll and have an impact.  Suddenly, however - at key junctures - you realise you’ve come to a vantage point and can see that something has to change.

It does take courage to be able to recognise ‘I can’t do this anymore’, but for me it’s been my own health challenges – only recently resolved – and those within my immediate family (my husband’s and my teenage daughter’s) that have made me perhaps a little more selfish, or perhaps just more self-protective.  We all have to learn to survive in this life, and no one else can do it for us.  This is not just about  you yourself – it’s having another person’s overload of weighty, and often unpredictable, needs to try to field and deal with on top of all the other challenges that crop up within family life and in life outside the home too.

When we are out of our depth, we all need to know when it’s time to hand over to the ‘experts’ – or, at least, to a coordinated programme of support and care from others.  I have certainly learned over the years that we do ourselves no favours at all by trying to provide all the support ourselves – feeling that it’s the only honourable course.  Because if someone is seen to be there, and to be ‘coping’, help doesn’t tend to be offered; no matter how precariously that person might be hanging on in there or how far from coping he might actually feel.  His job might be on the line; his own mental health being compromised. 

Years ago, at the Bristol Cancer Help Centre (now Penny Brohn Cancer Care) I was introduced to the idea of ‘a negative yes and a positive no’.  At that point in my life, I had begun increasingly to feel that damage limitation is often the name of the game; meaning a question of who gets damaged the least from this point, regardless of what went before.  We can’t turn back the clock or beam ourselves up into another reality, much as we might like to (unless we throw in the towel, as some people ultimately realise they have to – to preserve their own health and sanity), but we can start to do things differently.  I realise looking back how many times I’ve stayed with things, or taken more on, but my heart not being in it I’ve been unable to do it with a truly good grace.  While I’ve been going through the motions, but inwardly screaming “No!!!!", I’ve wondered where everyone else was and my burden has felt like a sentence to a lifetime of hard labour. 

 

Yet the time I finally did say no, citing my own family’s needs (it was in the evening just after my a birthday party of my daughter's; presents were still waiting to be opened; the occasion was joyful in every other respect), suddenly, miraculously, the mental health team took over.

I realise now that they had a duty of care: that’s because now I know the lingo and understand what the governing concepts are – like gatekeeping and pathways – and more about the way the system operates.  But at the time it was as if I had pressed a magic button, though I didn’t know which one or what exactly had changed. 

From there on Mum had her things packed and was taken into hospital and, through being admitted, we were advised she would now finally be eligible to have a Community Psychiatric Nurse allocated to her upon discharge.  I’d been soldiering on alone, trying through humble entreaty to persuade someone that a Care Coordinator would be a useful addition to Mum’s support network (such as it was in those lean days; it was very largely just me).  Nothing I could have said or done would have achieved this result.  The professionals certainly finally saw how unwell she could be.  I was gobsmacked, and finally felt the richness and intoxication – at that moment, at least - of letting go!


 

13/08/2014 11:33:30

Learning through experience


Beginning to redefine terms


Like many others I don’t really like being described as a ‘carer’.  It sounds to me a bit like a ‘minder’, or an animal trainer: patronising, as if the cared-for individual is invalid, freakish, deficient or unable to look after herself. 

It would be very difficult for any of us to accept that significant help was needed in order for us to stay afloat in our lives at any given time.  All of us like to feel self-sufficient and independent.  Of course when we are sick we all need others’ help and support and, if we are lucky, we are able to recover and lead a life of reasonable quality again.  Becoming vulnerable through ill health can happen to anyone, though, and does to most of us at different points in our lives.  At such times, roles can be reversed and an erstwhile ‘carer’ can become the cared-for person.

Pills

"...it’s not such common knowledge that the theory backing the SSRI generation of anti-depressants is still only a hypothesis..."


For those of us who regularly help someone with a long-term and often intermittent condition, the term carer is in common usage and as everyone understands that it means some combination of supporter, advocate, right-hand and back-up person, friend, partner, family member and/or companion (is all of this really suggested by a single word?), it is useful as a blanket term.

In the same way we are stuck with ‘patient’, ‘service user’ and ‘client’, although each of them also have derogatory connotations for some people.  In this blog I am going to vary the terms describing the person being supported as, although we’re all most familiar with ‘patient’, it’s not a term I feel comfortable with because of its connotations of passivity and subservience.  On the other hand ‘service user’ is too much of a mouthful and could be seen to carry shades of exploitation (as in using, but not really needing, the services; or using them more than is necessary - overusing them), and ‘client’ sounds American and redolent of the litigation culture. However, I can’t at present think of anything better to use.


While I realise there are any number of permutations of relationship between people who need support with mental health issues and those who provide help for them in various ways, I imagine there are also some common challenges and personal qualities that unite the subsection of society I’ve seen described in the newspapers with increasing frequency as the ‘hidden army’ and ‘unsung heroes of our times’ – most recently by the Deputy Prime Minister, Nick Clegg.

I grew up in a family blighted by serious mental illness and survived to tell the tale, but perhaps haven’t thrived in life in the way I might otherwise have done as a result. I realised I needed to become centrally involved with my parents’ health challenges when my father became terminally ill and my - often extremely unwell - mother was endeavouring to nurse him at home. My father later died, when my parents were both only in their mid-fifties but Mum and I did manage to care for Dad at home to the last, and he was spared from languishing and dying in hospital.

During that period I watched with tenderness and saw respect and a closeness revived between my parents as Dad also experienced, for example, an involuntary tremor in his hand and ‘busy legs’: odd, additional effects of the medication each of them had been given.  He finally realised that what Mum had had to endure for years as the result of her own medication, when he’d felt irritation and impatience with her, hadn’t been her fault and understood that she hadn’t been able to help it. Each evening they would lay out their own piles of pills and, as my dad faded with non-Hodgkin’s lymphoma, Mum was at times the stronger one - the carer.

I should explain that ‘side effects’ is another term I try not to use as it implies that all additional, unwanted results of powerful pharmaceuticals are necessarily minor and that they take place somewhere in the wings, whereas in fact they comprise a significant percentage of a drug’s total effects; sometimes quite a high percentage.  These additional effects - and potential long-term, and even irreversible, ones too - need to be considered and weighed up, along with the drug’s main effects, even if these appear to be largely beneficial and therefore the medication to be achieving the purpose for which it was prescribed … and that, as most people who have been the recipients of prescribed psychiatric medication have experienced, is by no means always the case. 

Doctors nowadays openly discuss the fact that a lot of psychiatric meds are prescribed to some extent experimentally, and adding supplementary doses or trying something else straight afterwards is common practice where a change is deemed necessary.  But while many people nowadays are aware that a lot of these drugs were developed for quite another purpose, and only accidentally found to have some beneficial effects in treating mental health patients, we don’t hear much about the fact that their mechanisms are still largely unknown.  Furthermore, it’s not such common knowledge that, for example, the theory backing the SSRI generation of anti-depressants is still only a hypothesis, and their possible negative effects are, for whatever reason, also not widely discussed.

Even when a medication regime is settled upon, its primary function is often its ‘holding ability’ – that is, it largely keeps things from fluctuating too wildly.  It’s not unheard of for people to find themselves ultimately parked on a cocktail of powerful psychotropic (mind altering) drugs, which were initially utilized in order to medicate them into a state that approximated balance and were then left in place in an attempt to maintain the status quo.

If no one asks questions at this stage - if they haven’t before - doctors and psychiatrists can, albeit unwittingly, reinforce a situation in which their client is imbibing a prescription that’s no longer helpful or appropriate (not having time to go minutely over each patient’s drug regime before each consultation).  It’s typically another case of thinking: ‘if it doesn’t seem broken, why mend it?’ But in this case, this is playing with fire. 

When the ‘side effect’ is that your husband, daughter, mother-in-law or grandpa is so sedated that they hardly know what day it is, their speech is slurred, they don’t have ‘a life’ anymore (no work, no interests, no social life) and they drag themselves through the day without enthusiasm, purpose or any sense of engagement with the world around them, as a carer you begin to understand that the lists on the white slips of paper in the packets warrant proper scrutiny, research needs to be done and someone needs to set the ball of change rolling … guess who…

You also start to realise that you’re the only one who has the full picture of what’s going on from day-to-day, week to week (and during those critical nights, weekends and Bank Holidays when it seems there’s no help at hand), whereas clinicians only ever see their patients for a short stretch of time. You begin to get a sense of the functions you might be able to fulfil as a central player in a respectful and inclusive care team - comprising client, professionals and family members (and sometimes involved friends and neighbours too) - providing context; diarizing events, routines (or lack of them); noting conversations, comments, fluctuations in that person’s state and welfare; intervening in a more relevant, clued up way, then providing focussed feedback, and so on.  You even become an ‘expert by experience’ in medications and their function, potential interactions and so on. 


Nowadays, with the world-wide-web of course we can all become largely informed.  As carers, questioning and pointing out where things aren’t working is a great help all round, and we can be powerful catalysts for change. 

When we, as carers, engage ourselves minutely with every aspect of treatment and care this tends to be a boon to medical staff who can become even more interested in the person we care for when we have new observations, theories and thoughts to bring to the table.  We rekindle, or reinforce, their human interest in the person they see for short periods of time in the consulting room and, in my more recent experience, psychiatrists that I have worked alongside and together with have seemed grateful for my input and genuinely prepared to acknowledge that my mum and I are the specialists (we live with the illness all the time, after all).
 

We’re here to consult; to offer advice, but in the end the decisions are yours”, we were told by one particularly enlightened psychiatrist a few years ago.  This felt empowering in the extreme, particularly in the context of all that had gone before.

 

 

13/08/2014 10:21:43

The proverbial ‘next person'

Let’s get real about caring for someone suffering with mental illness!

I was ‘the next person’; people had been in my shoes before but they hadn’t reported back - at least not to me - or I hadn’t known where or how to find out about wisdom gleaned before that could have helped me. Anyhow, if my predecessors had complained, nothing had really changed or I couldn’t imagine things having previously been worse.  In my experience, if you stumbled upon an enlightened, respectful and humble member of staff who could get alongside you and really be helpful in what I recently heard a psychiatrist call “The Bad Old Days”, it was the exception rather than the rule. 


There have always been good people, of course, lots of them, but somehow you rarely seemed to come across many of them yourself back then - I’m talking about the 1990s - and I know some people still meet a brick wall like the one described above nowadays, too.  I don’t know whether I can just access better care nowadays because I understand the system more.  Honestly I think it’s largely a matter of luck, though, and when you’re the one with bad luck, again, it feels like the final insult when you already feel that you’re dealing with all you possibly can.  xz

 


I dedicate my recollections and thoughts on this subject to each and every person reading this who either is right now, or could one day be, the next person.


My own struggle began in the days before we all used the internet so much (or certainly, before I really learned to use a computer).  Information sharing wasn’t nearly so advanced back then, at least as far as local directories and regional information went.   I had wound up needing to keep a centre-stage eye on my mother’s mental health when my father became terminally ill, and later died.  I knew very little about mental health care, but initially found it very puzzling that Mum was merely under the GP having, as she had then, a 28-year history of major mental health challenges, in the shape of classic manic depression (or, as they call it now, bipolar disorder).

The story went that, when her excellent psychiatrist retired (a lady who really understood her, had her effectively self-dosing and - to all intents and purposes - in long-term remission), she attended an appointment with a potential replacement.  This ‘girl’, she said, was half her age.  Mum found it hard to imagine her having the capacity or empathy to be able to fathom the gist of the experience of a middle-aged woman who has been through Hell and back again, repeatedly, and is ever poised on the brink.

It just might have worked, if the young psychiatrist hadn’t called her by the wrong name all the way through the session and divulged at the end that she was holding the wrong person’s notes and had thought she was talking to someone else from the outset.

Mum, being a reticent English housewife, didn’t complain or mention it to anyone.  She simply slipped back under the auspices of the family doctor, with whom she was comfortable and who knew my parents well (ok, he probably had no training in mental healthcare.  But he was kind and supportive, and even came over personally to persuade Mum to go quietly to hospital on occasion, realising it was imperative to give my dad a break and to have Mum kept safe, at least).  So he provided a band aid service and, apart from that, my parents suffered alone the barely supportable strain so bravely borne by couples where one, and sometimes even both, have fallen victim to serious mental illness.

Showing up in the arena as a main player for the first time, I knew immediately that the deficit of specialised support wasn’t right.  From that moment of recognition onwards I embarked single-handedly on the quest to secure us the additional help of a Community Psychiatric Nurse. I say ‘us’ deliberately.  At best, this resource should be provided for us, the carers, too.

I’d heard of the existence of this evidently rare and elusive breed through a friend who attended Manic Depressive Society meetings.  Incredibly, Mum and Dad had never even heard them mentioned.  Astonishingly, I’ve now discovered the first CPN was appointed in 1968 - that meant that this backup had been available for thirty years, and my parents had never been told.  Why does it always seem to be that you have to know, yourself, what you need before you’re in with any chance of getting it?  It took me more than ten years to succeed in my crusade.  Following Mum’s first hospital admission for almost two decades, in 2005 she was awarded her first CPN Care-Coordinator.

 

Most people contend, with some authority, that bipolar susceptibility is hereditary.  For whatever reason, the year after my father’s death I succumbed to major depression following my daughter’s traumatic birth.  I’d resolved never to take psychiatric medication, having watched my mother’s spirit being close to eradicated by the cocktail of drugs she was on and been distressed to observe what I called her ‘chemically regulated personality’.  But after five months of virtually no sleep whatsoever, I really did feel I was starting to lose control of my mind, and went to the doctor’s in a panic.  Looking back, I was principally suffering from sleep deprivation, probably. 

The doctor got me to start bottle feeding my baby daughter so I could take sleeping tablets and then the inevitable SSRI antidepressants - the remedy du jour or, should I say, ‘of our era’.  To my understanding, a GP - who is unlikely to have been educated in mental health care, but is tasked with dealing with about 80% of the entire ‘mental health’ caseload and gatekeeping for the secondary services - would probably prescribe the same today. Anyhow, this was where my own cycling illness of fifteen years’ duration began.

Although I never experienced psychosis like Mum, just accesses of crazy creative energy and speeded up thinking, I plumbed the deepest depression in my ‘low’ phases over that period of time, and in the end had to give up work as I was so unwell for great chunks of each year.  Who could expect an employer to pay six months’ of sick pay each year? 

As time went on, my own lows deepened to a suicidal level of inner abandonment – at those times, I felt as though my spirit had gone out of me.  Naturally, it became harder and harder for me to deal with Mum when she got ‘high’ – to speak coherently with the Crisis Team staff and GP surgery, for instance – and I became unable to deal with her at all some of the time.  Brilliantly, my husband is wonderful with her and at times could take over completely from me. 

But I have imagined how it might have been had I been alone trying to deal with the situation, and the elusive professionals with their complicated systems.  It is partly this that has led me to want to work to help simplify and improve what’s on offer; to inform the policymakers, local commissioners and service providers about how things have been for people like my mum and dad, for me myself and many like us.

So I am addressing these blogs to the person I am always working for and speaking on behalf of; for whom I am concerned, and on whose behalf I am determined to do my bit in order to help herald in real and lasting change.  

None of us know when we are going to be called to do something difficult and challenging, and any of us could end up supporting someone close to us who is suffering with serious emotional distress.  Therefore, I dedicate my recollections and thoughts on this subject to each and every person reading this who either is right now, or could one day be, the next person.

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Carry on caring blog

 

Nicky Heywood

 

Nicky Hayward is a carer who has been helping support her mother through multiple bipolar episodes for many years.  She is involved as a Lived Experience expert/ carer representative with a number of organisations, including the RCPsych, UCL, UWE and the Mental Health Alliance South West. 

Nicky is keen to add her voice to the growing number of those, of both grassroots and establishment figures, who are genuinely trying to precipitate a quantum leap in the way mental health care is approached and delivered in our society, and is convinced it is imperative as many of us as possible take advantage of the current window of opportunity: a palpable groundswell of willingness to regroup and return to the drawing board.  She has survived to face another day largely by being able to see the latent humour in the deadly serious and harnessing the power of irony in the battle to effect lasting change.


If you would like to contribute to our Blog Zone series, please email an outline of your blog to: jburnside@rcpsych.ac.uk