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

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.

 

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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