‘What does psychology have to offer at end of life?’ – an EAPC re-blog

In her well-articulated article, Dr Jenny Strachan, Clinical Psychologist, Marie Curie Hospice, Edinburgh, United Kingdom, talks about what it is that psychology has to offer when there is no mental health problem to treat:

The ‘science of mind and behaviour’ has many branches. Developmental psychology explores how our minds and behaviours are shaped by our early years’ experiences. Cognitive neuropsychology investigates how they are determined by the structure and functions of the brain. Social psychology considers the influence of the groups, large and small, in which we belong.

If psychologists in palliative care stick to a narrow, ‘clinical’ interpretation of the role, that is, direct treatment of disorder, we miss an opportunity to promote and preserve the wellbeing of all our patients. Not to mention the wellbeing of fellow staff.

Psychology is not a complementary therapy. It should not be thought of as an ‘extra’ that we add in for the patients who are struggling. It is the theory-driven, evidence-based study of being human, and it has something to offer us all.

Exactly. Psychology comes from an academic study of ordinary people of all ages behaving the way people do in the range of conditions they encounter. It deals with extremes, of course it does, but it is rooted in normality and as such has always been more able to distinguish the extraordinary within that context from the extraordinary that marks illness than disciplines defined by the illness model of behaviour. When bad things happen to people – abuse, terror, war, poverty and deprivation – it should be no surprise that personal survival depends on making the best, consciously and unconsciously, of one’s own psychological defences. This is adaptive and normal even though its expression may seem far from being either.

Strachan is talking here about terminal care but as a clinical psychologist for adults with intellectual disabilities, that was our approach before the emphasis on therapy took hold. There was triumph in finding a way for someone to use a cash point independently, in devising a one-off experiment to establish reliability of eye-pointing for a complex decision or assessing whether or not a man accused of masterminding a criminal act was faking his disability so as to appear incapable, and enabling a woman about whom many of us had concerns regarding her apparent passivity, to show us she knew exactly what getting married meant and that she wanted to get on with it.

To me, therapy is a last resort for most people because it means we’ve failed as applied psychologists to promote well-being as a key activity, whether with vulnerable groups specifically or in society at large. Our discipline establishes and extends bodies of knowledge in every area affecting humans, from building design to neurobiology, group processes and social influence, the impact of the prenatal environment, causes and management of criminality, and the social dynamics of ageing and dying. Which begs the question – why are we so focused on delivering cognitive therapy to people who may not have needed that at all had we put the same effort and priority into prevention and resilience?

I see Strachan’s article as a call for psychology to re-establish itself as the multi-dimensional science it is; one that, instead of spending all its time pulling people out of the river, is able to look upstream to see what is pushing them in*.

 

 

*This is a paraphrasing of a quote by a senior nurse in (probably) the Nursing Times at least thirty years ago and for which I can no longer find the source. The idea has been around that long and still it seems new.

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Can perpetrators be victims too?

Today there is a major outcry about what appears at face value to be extremely lenient sentencing of a paedophile and some extraordinary comments made by the prosecution about the child victim’s behaviour.

The prosecutor Robert Colover was also criticised after he reportedly told the hearing: “The girl is predatory in all her actions and she is sexually experienced.”

I listened to the phone-in on BBC radio 5Live where people with a great deal of experience of sexual abuse – some of them professionals in the field, others victims – were almost unanimous in their condemnation, with a few arguing somewhat unconvincingly of the new ‘knowingness’ of young girls. Nowhere though, was there any consideration of the perpetrator – beyond that fact that he is forty one years old and therefore unarguably culpable.

Maybe they are right but, for myself, I would like to know all the facts before taking a position. That’s because I have known numerous mentally vulnerable men who have been victimised by children & I actually don’t know how many may have got as far as this did. One was lured into a school by a group of twelve year olds and taunted about the size of his penis until eventually he dropped his trousers to show them. He was arrested. The girls claimed he had set up CCTV in the girls’ toilets and he agreed – he thought it was a compliment on his skills with gadgets. Luckily, it was possible to demonstrate his vulnerability – a combination of Asperger’s and severely impaired intellectual functioning – so that, while the outcome of the court proceedings registered his guilt with regard to exposure, the sentence reflected his lack of wilful intent.

So what about the language used? Let’s be clear – this was used by the prosecution not the defence so why? What did he know that we don’t? And let’s be clear too that whether or not someone is sexually experienced is a fact not a judgment. I just hope he said that the girl’s behaviour (as opposed to the girl herself) was predatory because that too is a matter of observation, albeit with a degree of leeway. Nowhere in this argument is there a case for blaming the child; however ‘knowing’ or ‘precocious’ (another word that came up on the radio phone-in) a child may be, the onus for responsible behaviour lies with the adult – at least where the adult is the one with the greater power. If neither party has full competence though, how is culpability to be decided? Maybe the best we can do is to apply the law in a way that recognises all the vulnerabilities, and my wish here is for better information by which to understand both the comments and the judgment before in turn judging each in ignorance.

Being Human: getting round the ‘them and us’ of clinical practice

English: Hôtel Dieu in Paris, about ad 1500. T...

Last week I popped into the optician’s to make an appointment for a routine eye test and I was asked if I was a patient there. Well, was I? A patient? Not before I stepped over the threshold, I thought, and I wasn’t ill. There were goods on sale, it looked like a shop and I wasn’t entirely convinced that I could be a patient in a shop. Maybe that sounds a little touchy – what’s wrong with being a patient if you’re receiving health care? Well the word, for a start. It implies passivity and dependence and not an awful lot of control, and frankly, that is pretty much how clinicians have wanted their clientele over the years. There has been a shift in recent times but there are occasions when it seems the words are just rhetoric. Listen to almost any health care clinician – although I must say that doctors are the worst offenders in my experience – talking generically about health issues. As soon as they begin to discuss the population – us – there are no people, we have all suddenly become patients.

Tom Main, way back in 1957 in his seminal collection of essays, The Ailment, highlighted the need clinicians seemed to have for separation. Staff are, by definition, healthy and patients are not, which raises the question of how patients can ever be healthy if everyone is automatically a patient just by dint of not being a doctor. That the reverse also applies so that doctors cannot be patients is most likely evidenced by a traditional denial of health problems, and the historically ridiculous working hours that were regarded as ‘character building’. A receptionist at my local surgery once called me ‘Miss’ because, she whispered, ‘we don’t like patients to know doctors get ill’. A clear indication that the culture did not, and perhaps still does not, allow for a matrix.

I am banging on about this today because two articles in the latest issue of Clinical Psychology & People with Learning Disabilities (intellectual disability) exemplify a humanisation of the relationship between health professionals and those we work with. Mark Haydon-Laurelut, a systemic psychotherapist with Sussex Partnership NHS Foundation Trust and Portsmouth university, describes a process called reflexive self awareness in which staff can begin to understand and make sense of ‘the part they are playing in the social construction of the lives of those they support.’ In other words, how does the way we think of someone or understand them, the stereotypes or historical references we have applied, affect our actions when they ‘do’ something? Mark gets people to consider the meaning of actions for all the participants – for instance throwing a cushion at someone. He asks everyone to think about the relationship that exists, whether this was an aggressive act, a joke, and attempt at communication by a person with limited language. The discussion centres around questions about meaning and what is being ‘made’ by a given action, evidence – what there is to support beliefs about intention, and ideas for actions based on conclusions. It is a process that humanises all parties by equalising their participation in a micro-relationship that can be set up in an instant, and it enquires, it does not blame. Such a contrast with current public toxicities; perhaps there is something organisations can learn from this.

The second article is by Brian Leaning, a clinical psychologist in Ealing. It’s called The Funnel: a brief narrative and it is indeed brief. But that page-and-a-bit captures a completely shared humanity. Brian describes his encounters with a woman who refuses to see psychologists, nurses, psychiatrists and, one gets the impression, anyone at all who might be wearing a badge. She and Brian have exchanges in the street that would make traditional therapists implode with the weight of their countertransference issues, and eventually they get to meet. He attached a funnel to her notes to remind everyone of the awfulness of this woman’s past experience and which, I suggest, builds a platform that shows what happens when people get lost in the terminologies of health care.

These two articles demonstrate the value of re-considering the clinical relationship; allowing it to breathe and become as consensual as legislation requires but traditional psychologies barely allow. The sooner, I think, that we all abandon the language of dependency and separation and think of health care as a collaborative effort with joint provider-recipient responsibilities, the sooner the nightmare of blame, covered-up errors, media witch hunts, and tickbox target paralysis will come to an end.

Holocaust Day and people with disabilities

victims of nazism and comunism

Holocaust Day: among the very many atrocities committed by the Nazis up to and including World War II, thousands of people with disabilities were murdered in the interests of eliminating ‘incurable illness’. They called it euthanasia and it is almost certainly still happening somewhere in the world – perhaps so quietly and one by one that no one notices. Let’s try to notice, please.

http://www.ushmm.org/outreach/en/article.php?ModuleId=10007683

‘My Dad’s gone to Mars’ – when a star chart isn’t enough

It’s almost an affectation to say how much things have changed over these last few decades. A way of putting our hands on our collective hips and uttering the professional equivalent of  ‘When I were a lad …’, then shaking our heads in disbelief at the impact of modernity on treasured ways of doing things. Back in the good old days, psychologists were much more hands-on – demonstrating to bemused nurses how to teach an adult with intellectual disability (mental handicap as it was known) to feed themselves with a spoon.They would sit in rows of plastic seats as the live bait – Chris Cullen on one occasion – wielded spoon, semolina, and reluctant diner’s hand, in pursuit of successful launch and re-entry with payload. This would be rewarded by the delivery of a token. The nurses would hope to be rewarded by the patient chucking bowl and contents over the expert, at which point they would shuffle off for a fag break. Humiliation was at least private, if a little sticky.

army assault course

Interviews could be tough

My first job as a qualified clinical psychologist was in Bromley. It was a community job which meant beetling about the borough in my mini, visiting day centres, our service base at Bassetts, and Darenth Park hospital from which we were decanting the desolate neglectees of previous care philosophies. Darenth was a vast institution near Dartford which, when approached from the south, looked like Disneyland with its white walls and dots of spires. Inside, it was more like Colditz and, as the closure progressed, like something awful the war had tried and failed to demolish.

I was working at a smart new hostel where residents, now called ‘clients’, would have their own rooms and bedding, cook their own meals, and enjoy the liberties of an affluent middle class town. Part of my job was to work with the people who would be coming from Darenth, to prepare them for this new privileged life. In retrospect, it might have been an idea to check with the recipients of this beneficence. Three elderly women, successful graduates of the hostel who moved to an unstaffed satellite house down the road, were initially overjoyed at their change in fortune, but gradually became withdrawn, angry, depressed and hostile. They said yes, it was wonderful, but it should have happened ‘bloody years ago’, and now it was too late. A small group of men with a combined age of around 700 years who had spent nearly all their lives in the hospital, refused to engage with the new system and were sullen and negative about every aspect of it. We had forgotten, in our enthusiasm for the shiny new life we were giving them, that we had simultaneously negated and devalued the one they had before. We had to learn a bit of humility and they taught us how to see what they saw [1].

Another group of men took umbrage for rather different reasons. In expunging derogatory terminology according to Wolfensberger’s principles of normalisation, we had thrown out their social references.  This group refused to peel potatoes, make beds, or do the vacuuming because they were ‘High Grades’ and that was work for ‘Low Grades’ or, indeed, women. Quite. One of those low grades, a sorry pile of unkempt, raggedy cast-offs with contractures of his limbs and no teeth, went on to staff the day centre shop. He had somehow learned about currency and arithmetic at the hospital.  More surprisingly and to his endless credit,  he had also learned about grace, dignity  and humour in that place, and brought it to us when our limping new approach gave him the platform. We all learned about potential – with him and with others.  The man with Down’s Syndrome who made a Cinderella shift from sack of spuds to Miami Vice at his first proper party; another man with Down’s who – given the freedom to take his electric wheelchair out and about – brought traffic to a halt in Bromley by yahooing the wrong way down the middle of the high street; and the chap who finally understood that his dad wasn’t on Mars when we broke with prevailing wisdom and helped him understand about death instead. 

This was where psychotherapy for people with learning disabilities got a foothold. It happened first at the Tavistock Clinic with pioneering therapists, Valerie Sinason, Jon Stokes and others, but only by specialist referral and after a long wait. I was lucky to be working with Alexis Waitman who was heading up the Training team in Bromley. We had both been used to talking to people when they were upset and because of our backgrounds – she an ex-social worker and me an ex-nurse – we had never thought to start by asking about their IQ. For these people we found that, by accident of a few points on a scale, they could be denied counselling and instead put on a behaviour chart which focused only on what they did and not how they felt. The system manipulated behaviour while others had their distresses heard and validated. It was unfair. What’s more, it was endemic, there was no precedent, and some people were openly derisory  – apparently you couldn’t talk to ‘people like that’. There also weren’t any books to say otherwise, so we wrote one.

Bromley was ahead of its time, probably by default as it had always shipped its vulnerable adults out of the borough and so had to build something new when places began to close. Nevertheless, the small group of people there – Colin Lambert, Dr Ros Bates, Terry (whose surname I can’t recall), and Alexis – had an energy, a philosophy, and a willingness to take reputational risks in driving the revolutionary approach that saw me through the rest of my career. They were the foundation of the model of embedded and personalised services I have aimed for throughout. Connection and continuity, people first, dignity, grace, fun, and humanity. What a surprise that people whose IQ was short a few notches had those same needs. That’s ironic, by the way.

There was no irony at my next stop, the least said about which the better. I stayed a year, had my reputation impugned, received threats of litigation, set the service off-limits for trainees due to prevailing poor practice, and had to relocate the test equipment from our small department to somewhere a person unqualified to use it could not lay hands. One day, I noticed a social worker haring down the road with a client in a wheelchair balancing his suitcase on his knee. All it lacked was the Benny Hill theme. When I asked later what was going on, she said she had heard the man’s discharge had been revoked at the last minute (it happened, often for no reason) and she was getting him ‘the hell out’ before the message arrived on her desk. Not long after, I decided to ‘get the hell out’ too.

Well, didn’t you just know there would be four parts to this trilogy? Clever you – right again! Moving to Brighton in 1989 was a move from Mordor back to Middle Earth so comb your toes, check your pocketses for mystical bling, and we’ll saddle an orc to get on over there.

Brighton Pavilion

1. Fensome, H. ‘Sharing Memories‘. In Waitman, A. and Conboy-Hill, S. (Eds) Psychotherapy and Mental Handicap. Sage, 1991.

Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities

Demo of BP equipment

SL demo of BP equipment

It can take a long time to translate the uphill trek of the funding application into the enervating research you set out to do And afterwards, there seems to be an even longer trail towards placing an academic report of that work in a suitable publication.  The Journal of Medical Internet Research (JMIR) is about as appropriate a positioning as we could have hoped for, with its focus on best use of technology in the interests of health. As you might expect, JMIR does not confine its publication to dry text, and so there are images drawn from the study, and even a video tour of the virtual environment. We are very pleased to be included.

Hall, V., Conboy-Hill, S., Taylor, D. Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities: Acceptability, Usability, and Potential Utility. Journal of Medical Internet Research, Vol 13, No 4 2011. Oct-Dec. http://www.jmir.org/2011/4/e91/  

Val Hall – university of Brighton

Dave Taylor – Imperial College London

Suzanne Conboy-Hill – Sussex Partnership NHS Foundation Trust & university of Brighton

IASSID MHID conference, Manchester

This three day event, bringing together the best of mental health and learning disability (intellectual disability) research and practice, opens on September 1st. I was expecting to deliver our presentation (Second Life, People with Learning Disabilities, and Capacity to Consent: Conboy-Hill, Taylor, and Hall) outlining the results of our NIHR funded study, but unfortunately, I am not able to attend for family reasons. Nicky Gregory, a courageous colleague, will be fronting it up for me, and hoping that all the technical wizardry does its job. If it does, she will be able to sit back and let it play. The videos will tell the story as well as anything; the narration should do the rest. But, in the event that she has to go a capella, I am certain she will receive a more than sympathetic hearing.

Elsewhere, Celia Heneage will be presenting a workshop with Nicky on group work, and Peter Baker will be talking about his work in positive behaviour support. A pretty good turnout for Sussex Partnership. Break a leg, chaps!