So, where was I …?

Brighton West Pier Dec 2012Brighton is an extraordinary place. Described by the journalist Keith Waterhouse as ‘a town that always looks as though it’s helping the police with their enquiries’, I’ve imagined Eastbourne and Worthing either side folding their arms, tapping their feet in an irritated fashion and wishing it would just sit down and be quiet, for goodness sake. I blame the Prince Regent; if he hadn’t come waltzing down here with his entourage, partying like it was 1799 and building hallucinatory palaces, the sixties would never have got a look-in and we would not now have this noisy, unruly, flamboyant, drama-queen of a city. I can’t help thinking Hove is a reluctant bride in this relationship and it would rather have twinned with Actually, but it is where it is so it keeps its curtains drawn and resists the neon leakage from beyond what’s left of the West Pier.

Why is this important? Because I doubt that, without this exuberance of soul and spirit, Brighton would not have been able to take a lead in forward thinking and socially risky services for vulnerable people any more than most other towns and cities that teetered on the edge of realisation and waited to see what happened to whoever went first. Here, I was holding people back from putting new ideas into practice – at least until we knew a bit more about how they might work – instead of having to kick them up the jobsworth. Our local authority and voluntary sector partners were energetic and vivacious, and our care workers had studs, purple dreads, and ear-cuffs – the sort of people who, ten miles along the road in any direction, put the wind up statutory agencies.

I joined Brighton Health Authority’s Community Mental Handicap Team in September 1989. Psychology was essentially just me and a mirror for quite a while until there was something approaching a service into which to induct assistants. I had unparalleled support from the service manager, Joel Talary, despite the discovery that we were both always right, never forgot anything, and certainly never misinterpreted whatever it was we had not forgotten. We became part of South Downs Health Trust somewhere along the line when business and cut throat competitiveness were more valued than collaboration and service, and our colours changed from the blue of the sea and the green of the south downs to a kind of burnt umber which seemed to reflect a less ecological ethos. Not, of course, the Trust’s fault, this was driven by government on the principle that competition would make us more financially viable, and they were right.

Whatever I may have thought about the erosion of freedoms we had taken for granted, having to count the costs of services and account for them changed the NHS forever and began to dismantle the wastefulness of some of its practices. By the time we were absorbed by Sussex Partnership in 2006, just after Joel retired, we were a whole lot leaner and meaner, we were business savvy, we had ditched our scratchy smudged inky overhead slides for power point presentations with punchy bullet points and natty animations. Not that the absorption was entirely straightforward. East and West Sussex had already formed a continuous arch above us and divvied up the jobs. Brighton and Hove, the thorn between the two roses, came late to the negotiations and had to stand at the door with offerings, hoping to be let in. One of those offerings, we heard, was that learning disability services would not join the Trust; instead it would move to the local authority, lock stock and staff nurse.

They were tense times because the move could mean loss of NHS terms and conditions which included pensions, training, and the research funding which was becoming increasingly important. It did not happen and we, the smallest service of the smallest user group in the smallest sector of this huge area, packed our bags and moved in with everyone else. Suddenly, all the people with whom we had been competing under the old rules became colleagues. Some of them also became our managers as we were a little behind in the jobs stakes; big fish in small ponds adjusted to shrinkage of status and people whose remit had covered a Christmas card list of staff found they needed a PA to remind them who they managed. From considering the needs of a population of 250,000 we were now thinking strategically about 1.5 million and, instead of just one person between me and the Chief Executive, there were now dozens.

Of course, Brighton did not cease to be Brighton. Small as we were, we made more noise, more trouble, stuck out like psychedelic sore thumbs, told anyone who would listen – and many who would rather not – how our way was best, and let ourselves into the corridors of power where we ran down both sides instead of walking smartly on the left wearing our indoor shoes. We offered the first counsellor training placement – possibly ever and anywhere – based in a learning disability front line service. Valerie DuGay, a woman who exuded calm and floated peach wisps of scarves down our corridors, stayed with us then for ten years. It was a precedent and others followed although colleges were confused about what value to place on our service. Some said the client group could not really be counselled and so trainees would need to double their placement hours for them to count, others said that we were so specialist that trainees would have to double their placement hours for them to count. Well, those were early days and no one would say that now.

They especially would not say that to Jane Steeples who came to us in training from a social care background. When I heard her first session on tape, I wondered what on earth I could possibly teach her, and she has become an exemplar in the very very human practice of psychotherapeutic counselling. Recently, she has had to accept that she might not be the lowbrow she has thought herself, tackling with style and verve an MSc in Supervision and Consultancy and earning Distinctions for both the research component and the overall qualification. She still has a dirty laugh though and is anyone’s for a pizza.

Another Distinction chalked up to our team came from Max Buchanan whose local authority challenging behaviour service joined up with ours, forming a kind of layer cake of agencies. Health was managed by the Trust, the learning disability team was managed by the council, and I managed the psychology service within which we now had two council workers. If any structure was guaranteed to cause mayhem, it was this but we made it work and somehow Max developed and promoted his service, first with Matt (another in our pair of Steeples), later with Diane Skudder, and succeeded in demonstrating excellence in his top-up psychology degree course with the Open University. As of now, he is using his insight and deepened intellectual grasp of problems and evidence to creatively apply Positive Psychology techniques to the difficulties some of our most vulnerable people are experiencing. Kind and emotionally liberating, placing value on personalised meaning ahead of behavioural suppression: that probably describes Max as much as it describes PP.

Other people have distinguished themselves through their personalities as well as their professionalism and utter commitment to the service and its users.

  • Celia Heneage; one of the most gentle of souls whose demeanour might lead some to take advantage. They would discover quickly that this would be unwise, never did a velvet glove contain such a hand of steel where principles and the centrality of the service user were at stake. Celia teaches on the clinical doctorate at Canterbury Christ Church university and brought her academic insights and knowledge to our service. She also brought group work and collaborations which recently gave rise to a special issue of a clinical journal.
  • Dr Elizabeth Scott-Gliba; someone I should not sit with if there is any chance one of us would begin laughing where laughing might  not be positively construed. She and I are trying to contain ourselves sufficiently to deliver an app that will support clinicians in assessments of capacity where vulnerable adults need to decide about treatment options.
  • Dr Sophie Doswell who came to us at a lower grade than she held elsewhere because she wanted to join our team. It was a time of great turbulence as I was withdrawing to focus on research and the Trust was reorganising its structures so that lines of reporting shifted, duties contracted and expanded in unforeseen ways, and responsibilities became governed by a much larger corporate mission than before. Sophie took up that slack and made it work and we succeeded in getting her the Consultant grade she deserved.
  • Dr Jane Edmonds; another gentle person whose capacity to say what I would like to say in a way that has people agreeing rather than reaching for weaponry is extraordinary. Jane has a role that requires a quality I have always admired but never really found a space for – which means it was largely beyond me – diplomacy and she uses it in spades. Now chairing the learning disability research group, I am confident that LD research will take some of its best steps forward in the near future.
  • Then there’s Nikki Green. Nikki is the beating heart of the team, the person who keeps everything in order, makes sure people know where they should be and who they should be with, and does it all with the most relentless cheeriness I have seen in anyone, ever. It is almost an insult to add that she too got herself an Open University degree during this time as if her abilities and efficiencies, her willingness and forethought should come second to plain old hard work and study. She is one who can do both.

Looking back, we achieved an enormous amount for such a small part of a small service. We qualified ourselves in everything possible so that our service users did not miss out: Elizabeth was our mental health specialist with particular skills in eating disorders – something our clients never had support with before.  Jane took on CBT despite feeling its directiveness might conflict with her person centred roots, and then raised her game in supervision and consultancy with her MSc. Max moved through positive behaviour support to positive psychology via his degree. Celia brought expert group work for well-being and health, and expertise in training CBT practitioners to work with people with learning disabilities. Sophie piled on courses in supervision. Diane took and passed her degree in behavioural analysis with Kent university and I hear now that she is embarking on a Master’s in autistic spectrum disorder. I got myself an MSc in Forensic Psychology from Leicester university for my 50th birthday (and yes, a Distinction, thank you!) so we could begin to comment on how some of our offenders should be managed.

Increasingly, we became involved in legal assessments, usually child protection and often with great conflict of interest difficulties if we did not manage the initial instruction carefully. We made leaflets to explain common problems and interventions, started a newsletter and an in-house journal, began training art therapists (another first for learning disability services), and stepped up our intake of Doctoral clinical trainees from Canterbury Christ Church using a multi-professional supervision structure.

Alongside all of this, and not at all passive recipients of our beneficence, the service user population – people many of us had known for many years – not only came alongside like so many colourful boats around a big old frigate, but began to join us in our efforts to make everyone’s lives better. They joined the Partnership Board, helped appoint our service manager, took part in interviewing for the Clinical Director, and introduced a grounded sense of reality to all our discussions. They got married, they had babies, they got divorced, got drunk, got honoured on national television (yes, I’m looking at you, Matthew Hellett!), got arrested and convicted, went into business with the help of fabulous support workers when there were no jobs, they made films, and they made music. Or at least that’s how Heavy Load describe what they do and if your fancy turns to loud crashing percussion with hollering vocals, that’s the band for you! But they’re not just giggers – there’s a protest going on here too, about language and about lifestyles. The ‘retard’ word is not alright, and neither is having to go home at 9 pm because of staff shift changes. The band has played its last date now but take a look at their web site then have a serious think about the issues they raise. The Stay up Late campaign is about people with learning disabilities claiming their freedom to be where everyone else is at night.  Their T shirt message, Gay at Weekendsis not expanded but most likely refers to constraints due to attitudes among families and carers such that only in respite care do people feel free to express their sexuality. I recall a man with Down’s Syndrome who was exactly that – gay only when he was away from his elderly mother and aunt who still saw him as a child. He was distraught when they died but also liberated because then he could be both an adult and an openly gay man, and he was probably in one of the best places possible for that – beautiful, brilliant, ebullient Brighton.

The final chapter for me has been the move to research which allowed me to spend time in a virtual world and call it work, and the emancipation of service users to statutory members of the learning disability research group. In that capacity, our group from Powerful Trainers is able to see and review all incoming research proposals at the same time as the clinicians and academics, to generate ideas for research projects, to hear presentations from Doctoral candidates, and eventually to become co-applicants on funding bids. Dr Mark Hayward, our Director of Research, heard me out when I went to him with the most outrageous idea for a study: build a hospital in Second Life, take people with learning disabilities round it, then interview them using the Cognitive Interview to see what they remember. He told me to go and find some friends and so I did – Dave Taylor at Imperial College who builds things in Second Life, and Professor Val Hall at Brighton university who didn’t but saw the value for marginalised groups. We got our money (thank you NIHR) and with people from Grace Eyre we did the job. The full story is here in the Journal of Medical Internet Research.

That story is not just about serendipity and good timing, it is also about vision, foresight, and an ability to set aside the gap between an idea and its immediate application.  Mark was able to do this but he may have been more cautious if the Trust’s approach to research, innovation, and creativity had been more constrained – less Brighton, you might say. That approach came from the top as most things do. In this instance a remarkable combination of leadership profiles in John Bacon CB (Chairman) and Lisa Rodrigues CBE (Chief Executive) who bring business nous and lengthy health service experience to the job. But more than that, and through some exceptionally difficult times, they have brought an unusual mixture of humanity and ambition, personality and financial housekeeping, rigorous governance and social availability. Lisa tweets prodigiously from @lisasaysthis and favours collaborative relationships with service users who now have places in almost all strands of the Trust. In research, there is LEAF, headed by Ruth Chandler, which reached the finals of the Health Services Journal awards this year, and of course we have our Powerful Trainers.

I have two remaining ambitions relating to these last years. The first is to initiate a virtual clinical environment for research, practice, and service user well-being, and the second is to put together an online and on-app training and support system that will allow clinicians to do what the Mental Capacity Act requires them to do and what it currently fails to help with*. Who knows if I will succeed but would you bet against me? Thought not!

This will not be my final post here but you will find rather more over at my other blog where fiction – often infused with science without always becoming science fiction – is the thing. I hope you will pop over if only to reassure yourself that retirement is not a one-way spiral into the daytime TV schedules!

 

 

*This box is ticked here at Good Question

Edited 14/05/17 to include link to Good Question resource for decisions capacity interviewing.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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‘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.

So long, and thanks for …

student nursesWell, you know the rest. October 12th is a watershed date: my last as a paid NHS employee, and my first as a pensioner/student with aspirations to hang out in cafes, writing and wearing odd-looking hats. I have projects to finish – an online training package for capacity interviewing, and a working virtual clinical area for researchers, clinicians, and service users – so I have honorary contracts in place to keep professional links with Sussex Partnership & Brighton university. About the same time, it’s back to school with a new satchel and pencil case, on the tail of an MA in Creative Writing with Lancaster university, hence the need for hats. If you fancy a look at some short stories, the links are here on my other blog.

I joined the NHS in September 1971 as a student nurse, worried that being left handed and not having maths ‘O’ level would make it difficult for me to function in the role. All I knew about nursing came from Emergency Ward 10 where regulation was everything, and the Carry On films where it clearly wasn’t. Although both illustrated perfectly the state of the art with its formidable ward Sisters, cowering staff nurses, scuttling students, and on-tap doctor-totty. I chose my training hospital carefully. I looked at Barts, the London, Guys, and turned them all down in favour of their out of town poor relation, the North Middlesex. Why? Superior reputation? Close to theatres (artsy ones, not operating ones)? No, it was because the others sent me a list of items to bring with me, the most intrusive of which, to my mind, was the four pairs of navy blue knickers.

Brighton college of art rag week 1967Quite apart from the fact that my knicker colour of choice would have been bottle green (school colours, obviously), this was not school and I was not eighteen. In fact, I was so not eighteen that I had already been inducted into adulthood through spending a year at Brighton college of Art (in 1967 when it was possible to see diamonds in Lucy’s sky by inhaling even if you didn’t smoke), finding myself abandoned to the streets when Yorkshire council withdrew its out of county student grants, and working in a factory designing hot water bottle covers one week and packaging for Mary Quant cosmetics the next. That was followed by a couple of years working for a Leeds company that leased gaming machines to pubs and clubs, designing the interiors of some of the first pub discos in the UK, and trotting around the country (and occasionally off to what we referred to in awed tones as The Continent) at the behest of a boss whose idea of professional development was what you might call physical. I was not interested in having a loco parentis, the North Midd was not interested in being one to the point of regulating my underwear, and so I was interested in the North Midd.

I survived. Better, so did the hospital and a fair number of its patients, although back then critical injuries and a whole range of diseases meant fewer admissions got to be happy discharges and most of us saw more dying than we might have anticipated. I don’t imagine the numbers have changed much, but the bar has been raised. People we could not save are more likely to go home now, but the severities and activity levels demanded have taken up the slack. We sat with patients, fed them, spent hours in the toilets with them while they ejected foul material from both ends, washed their hair after dismantling the end of the bed, lifted them off the floor when they fell, and hauled them up and over in their beds without hoists because there were none. An elderly patient collapsed while I was getting him out of bed and took one of my lumbar discs with him.

I delivered two babies, started a students’ union, learned how to apply bandages and to tuck in sheets so they didn’t wrinkle. I worked nights for three months at a time and discovered that going shopping after a shift was unwise, unless coming home with a pair of boots a size too big instead of the washing powder you went out for counts as a plus. We resurrected the hospital pantomime and very nearly killed the Matron with one of the lights. We were visited by the Radio One Road Show with Ed (Stewpot) Stewart who managed to deliver a decent programme despite being confronted by serried ranks of Assistant Matrons in navy blue frocks and starched bosoms instead of the roomful of bopping nurses he might have expected. There was an exhibition of nursing and my artist’s credentials were unearthed so that I was asked to paint the setting for the ‘Sarah Gamp‘ midwifery display. I was given afternoons off and delivered rats in a fireplace and rags on a stool. I discovered intensive care.

I also discovered psychology. The first time was during a ward evaluation when the observation was made that I seemed to understand ‘the suicides and the head injuries’. What that meant and why the two would be bundled, I never figured out but perhaps it was something to do with both being initially unconscious and so hard to relate to. Not advising the suicides to ‘do a better job of it next time’ might have been another factor. People were cruel. The next time came as I was shoved into a side ward where the post-op patient being ‘specialed’ was flinging drip poles around and yelling that the anaesthetist was wearing red knickers. ‘Use a bit of psychology,’ said the nurse hi-tailing it off the scene. I thought I’d better find out what that was.

That discovery took me off, post qualification, in unanticipated directions: a few months on the fast-track RMN course at Guys which turned out not to be so fast if you got flu or did a midwifery rather than a psychiatry secondment; then by some miracle, a place at Goldsmiths’ College on the psychology degree course. I wore platform shoes to the interview (it was 1973) and confidently ticked the box about designing experiments because, well – I’d been to art college, hadn’t I? I still didn’t have any mathematical competence to speak of so, not surprisingly, the nuts and bolts of statistics gave me grief. It turned out that having a grasp of the shape of the data worked well enough, but I still have nightmares about the seven hour final exam. Yes, seven hours. Really. Of course Finals, threatening as they are to one’s projected self esteem, come nurses in ICUas a bit of a relief when all you have to give up in order to apply yourself to the revision is night duty in an intensive care unit where people got flown in from the desert (one of these tried to buy me from the anaesthetist for two camels; he argued for five) and new open heart surgery procedures deposited nests of tubes with a fragile human being in the middle onto uncurtained beds in a unit that scared the hell out of everyone who didn’t work there. I ran that unit some nights. One day I’ll tell you about the missing haggis.

Kings gave me professional refuge for another few years while I began to establish a toe-hold in a new discipline when, finally, nights in ICU to keep a flat, a cat, and a thread of a social life going through a full-time PhD, gave way to teaching evening classes and undergraduate tutorials through an equally impecunious Master’s in clinical psychology. University College couldn’t have been more different from Goldsmiths’, and the Institute of Psychiatry could hardly have been more alien to both. The NHS was my thread – a rope along a flimsy swaying bridge over the chasm into which I might have dropped on the misfortune of one grade from one examiner. Luckily, the examiners, the stars, the fates, the troll mascots you put on the end of your pens, and the particular pen, the purchase of which had forced me into close proximity with Princess Anne when she arrived to open a wing of something at the same time I was heading on auto-pilot for the hospital shop, were all on form. I went from the arty ethnic diversity of Goldmiths’ to the echoing halls of UCL with its unisex students and sunlit dust motes, to the layer cake of rarefied academia at the IoP where Eysenck still lobbed a set or two on the tennis courts and Jo Brand was hollering at Ward 1 miscreants loitering in outpatients.

We’re at 1982 now. Better take a breather, we have Hot Parrots yet to come.

Part One of – probably – three.

Edited 14/05/17 to accommodate images displaced by change of theme.