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.
Brighton 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 Weekends, is 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.
In 1981, I went on placement as a clinical trainee to a large mental handicap hospital in Surrey. I had never encountered people with learning disabilities before, and I was shocked to the core. But I was a qualified general nurse, and I was used to clearing up the messes bodies make when they’re ill or distressed. I was also used to pulling curtains around people on bedpans, to chasing doctors out of the women’s wards while personal care was being delivered, and to helping people to eat when they had forgotten how. I saw how morale was raised by giving patients a wash and set before visiting. We had to dismantle the bed head to achieve that, and spread rubber sheeting over the floor to contain any splashes. Imagine then, finding wards stacked with beds almost touching each other. With toilets that were nothing more than a series of holes cut in a wooden seat – no partitions, no toilet paper within reach, and no flush mechanism. Imagine being told that the elderly chap I was going to ‘test’, could be found on one of the ‘boys’ wards, which was in a different wing from the one housing the equally mature ‘girls’. Imagine receiving a request to go to a ward to identify ‘the shit flicker’. My supervisor there; defeat in her shoulders, her eyes, her mentality, said she didn’t know what we did that the local vicar couldn’t do. I don’t know what she meant, but I could see that she meant it.
I was there for two months, and beyond the desolation and social impoverishment, saw no physical abuse. A year or so later, I found myself on placement at another institution, this one in Kent. Darenth Park was a 2000 bed repository for adults and children with learning disabilities, and it was due for closure. It smelled of cabbage and urine, and the windows were grimy, sticky, broken portals through which the defeated campus could just about be seen, if you felt inclined to stand there long enough. The patients often stood there. They stood around in all sorts of places; rocking, flapping, biting their hands, eating dirt or bits of detritus and old dog ends.
That’s not to say there were no activities. Some of these were grand and much missed once the place finally shut down. Concerts, films, fairs; run by staff with the assistance of the ‘high grades’ – people thought capable enough of doing menial work, but not of receiving payment. A man I spoke to a couple of years later, moved out to a brand new hostel in the community, was depressed and miserable because he had no role in this new environment, the new improved and normalised world we had given him. He had experienced a dramatic loss of status by shifting from being a valued member of the hospital fire department and ‘body gang’, to potato-peeling kitchen skivvy. That we valued potato peeling (for him) as a step towards independence meant nothing as kitchen work had been done by ‘low grades’ and women (sic) at the institution.
By 1984, I was working in this new world and beginning to offer talking therapy to our service users. Bromley was one of the first boroughs to close its institutions and begin providing community ‘core and cluster’ residential services for people, many of whom who had never lived anywhere but an anonymous hospital. One of our first groups arrived along with two large bags: one contained their toothbrushes, the other their teeth. Neither offered any identification by which contents could be matched with their owners – assuming there had ever been a link. Certainly their clothes were more communal than individual, and had the look of expedience about them. Shapeless frocks for the women, trousers with elasticated waists for the men. As a team; nurses, psychologists, psychiatrists, trainers and educators, we set about de-institutionalising our residents, and watched the years dissolve away as they got the hang of shopping for clothes, having their hair done at salons, and cooking a meal for six after doing the shopping themselves with minimal support. There were so many highlights, watching people moving on to live independently, to get jobs locally, to join local church and club communities. But two stand out for me, both involving young men with Down’s Syndrome, and each tiny but triumphal in its own way. The first was a birthday party at the hostel where there was real party food (adult), real music (up to date), and real refreshments (proper wine). ‘Steve’, a largish but shortish chap whose appearance had been less couture than convenience, moseyed into the room wearing a Miami Vice outfit of ice green shirt, white trousers, and dark glasses. Cool before ‘cool’ was ‘cool’. The second was when ‘Alfie’ went shopping in Bromley on his own. ‘Alfie’ used an electric wheelchair (which no one could fix except the chap who had dismissed kitchen work as being beneath him) and was a tad gung-ho about its controls. We had a call from the police to come and get him as he had been yahooing at speed on the wrong side of the road in the high street and causing traffic chaos. Whatever else we did in those early years, with our science and our theories, it is the freedoms of fun and confidence, rule breaking and identity-stamping that, for me, exemplify the move from the dehumanising degradations of the past to the liberations of the present.
That’s why I was so shocked to see the BBC Panorama programme about Winterbourne View. In thirty years of working in learning disability services, I have not seen abuse of this kind. I have heard of plenty; often told me in therapy sessions by people only able to say what happened when the perpetrators were far out of reach. Institutional abuse has come to light via the media as well. Long before Panorama, ‘The Silent Minority’ was filmed undercover at St Lawrence’s hospital in Surrey, and tipped the impetus for change hard over into national action. The difference, barely forgivable as it is, between these two exposures, is that the St Lawrence’s abuse took place in an era of discriminatory partition where people with learning disabilities were feared, thought of as untreatable, and tidied away by society to large, closed communities. Parents were advised to ‘put him away and have another baby’, and the people who worked in the ‘away’ places, were under-resourced, under-skilled, undervalued, and equally institutionalised groups lacking direction or proper training. Society did not much care what happened to the patients, and families often abandoned them. Two women, cousins of the Queen, were patients of one of the hospitals I passed through in my training. The fact that no one knew quite who they were, or where, suggests that family visits were not exactly frequent:
For several decades two of the Queen Mother’s nieces, Katherine Bowes-Lyon and Nerissa Bowes-Lyon, were kept there without visits from the Royal Family and were declared dead by Buckingham Palace in an intentional fabrication. Wikipedia
Winterbourne is a different matter. These staff are not living onsite, isolated from the rest of society and so insulated from the norms of decent human behaviour. These staff have the benefit of news media, training, friends, family. They are people with lives embedded in the real-world who have direct access to ways of developing a moral yardstick, and yet they did not. What I saw was sadistic bullying perpetrated by a few and acquiesced to by the rest. I have seen neglect and poor practice born out of ignorance, fear and inexperience, and I have seen it turned around by people with skill, care, and respect for both the service users and the bewildered staff teams. This was not in the same league, and as such, it is astounding that the CQC did not pick up the signs when inspections were made.
Or is it? I would like to think that I have a ‘nose’ for the ethos of a service. That my experience allows me to see through the scripted presentations of good care to the plot holes that might indicate inadequacy. It’s worked in the past, but then I’ve been around a good many blocks in the development of that instinct, and I have more time to probe. If the CQC missed this, I have to speculate that this was due to inadequate experience and inadequate time. They did not know how to look for the plot holes, and did not have the time to reflect on the gaps. The tragedy is that the CQC is being given even more responsibilities, has even less funding than before, and if the government’s plans to allow free access to NHS services by private enterprise, its remit is going to be catastrophically unmanageable.
The answer? I wish I had one, but I suspect that part of the solution is public conscience. I hope that this undercover expose will drive local communities to make more contact with residential services of all kinds, and not just on open days. If local people become socially involved with such places, become visitors who bring the outside world with them to assist a bit, entertain a bit, ‘be with’ a bit, fewer bullying, torturing criminals will be able to get away with their abuses. We would soon know about the provisions where no one is allowed beyond the visitors’ room, where appointments have to be made to drop in on a friend who lives there, where glossy brochures are nothing but hollow scripts masking neglect, misery, and the annihilation of humanity. Most people have good ‘noses’; they know a bad smell when they find one, but they’re often intimidated by the authority of the system, the people paid to regulate and make safe. But as we pay them, the people who staff those systems and exercise that authority on our behalf, do we not also have some rights to question? Are we not also responsible?
This is a first-of-its-kind conference; a joint enterprise between the Division of Clinical Psychology (British Psychological Society) and two European specialist learning disability associations. It is hosted by the DCP’s Faculty of Learning disability, which comprises psychologists working with people with learning disabilities, primarily in the NHS but also through local authority and third sector provisions.
Sussex Partnership is well represented.
Nicky Gregory (with Celia Heneage) a workshop: Group work with people who have learning disabilities; sharing ideas from clinical practice.
And I am presenting our findings for the virtual world study: Second Life, People with Learning Disabilities, & Capacity to Consent.
We’re in good company; Professor Nigel Beail, President of the European Association for Mental Health in Intellectual Disability, Theresa Joyce, Chair of the Faculty of Learning disabilities, Valerie Sinason, pioneering psychotherapist for people with learning disabilities, Prof Bill Lindsay, and Baroness Sheila Hollins are presenting, chairing and overseeing symposia. I recognise many of the other names on the programme. The ones I don’t, are probably the Nigel/Bill/Valerie/Theresa/Sheilas of tomorrow.
Look out Manchester, have we got a show for you in September!
Conference details via their web page: http://www.mhid2011congress.co.uk/
Imagine making a live TV show with a bunch of potentially maverick scientists and a studio audience. Nervous? Good. Now imagine that you’re going to do this in a virtual world with all your presenters and guests represented as avatars and communicating using text, in-world voice, and VOIP. Not to mention you need them to face front at the right time, have in-world voice turned on but not up so you get lip sync without echo, and nobody’s connection cracks up. That’s the challenge faced by the Treet TV team that followed Dave Taylor, Robin Winter and me through the various sets in which medical training, research and development takes place in Second Life.
I am not at all sure what I had expected and, as all of this kind of interaction often takes place in one’s own very familiar environment at home, there is always the risk of being slightly ‘off duty’, as it were and forgetting that you need to sit up straight and pay attention. In my case, I had to get rid of the sheep helicopter that had followed me from an earlier steam punk exhibition and stop the cat purring into my microphone. I should also have ditched the hat and remembered to park my cursor so that my avatar held her head up instead of peering intently into an invisible gutter.
Clearly, marshalling amateurs like us is what this team does supremely well although at least one of us, (Mr Taylor, mentioning no names), had to be constrained to stop rushing around and just please stand still. Of course it was essentially the Imperial College Show and the build and animations designed and produced by Dave and Robin, the in-house 3D designer, were the stars. I have known about this work for some time but even so, I was astonished at the complexity of the models and interactivity available to trainee doctors and nurses in these realistic environments. In theatre, we looked at the workings of intricate positioning equipment for different operations as Robin ran through the animations and, on a ward, we saw the trail of information designed to alert nursing staff to developing risks.
Later, Dave demonstrated a patient examination animation in which lab tests could be ordered and treatment applied after palpating the patient’s abdomen. The chap even demanded water after perking up with his newly applied salbutamol nebuliser although this is plainly unrealistic. In my experience as a nurse it was always the loo they needed just as you got them kitted out with their tubes and lines. Maybe in the next iteration!
Meanwhile, I was hanging about, microphone muted so as not to introduce spurious and alarming domestic noises, outside the waiting room of the Royal Sussex County where we had run our study on consent last year. That was where I discovered I was still carrying my sonic screwdriver and also where I realised just how difficult it is to be spontaneous to order. Thank goodness my avatar was handling the hair, makeup and motion end of things or I would probably have tangled my feet, walked into the lamppost and delivered a glassy spinach-in-the-teeth beam to the air. Instead of which, my hat hid most of me while I examined the pavement in minute detail then walked sideways into the door frame.
Once successfully indoors, Saffia Widdershins and I did the tour of the examination room, operating theatre, and recovery room where we had taken twenty adults with learning disabilities in late 2009. This was an unscripted Q&A guided only by our run-through earlier in the evening. I should not have been surprised at how elements of our casual conversation were woven into that scene to give the impression of a planned interview. That’s professionalism.
Today, seeing the final product (see link above), I was struck by how much less ‘real’ it seemed as video than it had at the time and that, precisely, is the value of an immersive interactive virtual environment. However good a video presentation, and this is a remarkable production for so many reasons, it does not have the sense of co-presence, the personal volition, the capacity to change at will one’s perspective or some element of the environment. It does not involve because it is passive. Virtual technology is active, allows for change, capitalises on the social psychology of human interaction, and is responsive to the presence of its inhabitants. That’s why we use it for research, for training, for development of human services, and for management of risk.
That and the sheep helicopters.
This is a new publication in the same vein as Mencap’s ‘Death by Indifference’ shocker of a couple of years ago which exposed the scandalous way in which people with learning disabilities are often treated by the NHS. Not generally through malignance or harmful intent but through ignorance and blindness to their difficulties. Something called diagnostic overshadowing makes it difficult for many health care professionals to see beyond the learning disability so that other conditions, often physical or psychological and some of them as basic as being unable to eat without prompting, are over-looked.
Jo Lee, physiotherapist in our team, arrived in my office one morning spitting feathers about the cycle of neglect that one of her patients had experienced on a general ward. She went on to talk with undiminished heat about other patients whose inability to make independent use of instructions and facilities meant that they failed to maintain the improvements set in motion by active treatments such as intravenous fluids, assistance with eating, and support with mobility. Once these very hands-on interventions were removed, at the point where most of us would appreciate the need to be a bit more independent and self-starting, her patients were simply stopping. They didn’t know how to do the exercises themselves or they were frightened by the memory of the pain, they didn’t cough as required, they didn’t drink enough or eat and no one thought to remind them. As a result, their original condition failed to improve, they developed chest infections, kidney infections, were poorly nourished and began to deteriorate. Some died right there in the hospital as a result of avoidable illness.
Dual diagnosis further complicated matters. Having a learning disability AND dementia, for instance, makes finding residential care an almost impossible task due to the very strategies put in place to protect people. For homes to be registered, there has to be training in the care area covered by the registration and where there are two specialist areas, that’s two lots of training and an extra fee. When the demand for beds is so high as to make it unnecessary to go to the extra effort and expense of dual registration, why would anyone take the trouble? And so people with learning disability and dementia could find themselves languishing on a ward where nursing staff did not know what to do with them instead of being discharged to a service that would endeavor to make their lives comfortable and homely in their declining years.
A little while earlier, my colleagues and I had experienced something similar when a man with Down’s Syndrome had died because it had been impossible to convince general health colleagues and funding bodies that he was anorexic. Diagnostic masking obliterated the classic signs so that people could not see beyond his features and recognise that he was starving. My close colleague, Dr Elizabeth Scott-Gliba who had held a consultant post in eating disorders before joining our service, practically lived on the ward or on the end of her phone trying to establish a proper re-feeding regime and specialist service for him but too late. This man died the day a bed in a specialist unit and the funding to go with it became available.
In our paper, Jo and I detail the issues underlying these travesties and, with short case studies provided by other colleagues, describe what happened to four individuals. Three are tragic and awful and avoidable. One is creative, rule-bending and good-enough. As yet, this one is an exception but there is a very bright light being turned on health practice for vulnerable people such as these and as a result, changes are being put in place. In Brighton, our nursing team has a specialist liaison service with the general hospitals, a nurse practitioner works with GPs to assist them in accommodating people with learning disabilities, Health Action Plans are being implemented, and health education is being made available so that people can take more control of their own health.
There’s a long way to go but we have to stay on track, recession or no recession. Going back is not an option, really it isn’t.
Reference: Lee, J. and Conboy-Hill, 2010 S. ‘Specialist, palliative, and rehabilitative care for people with learning disabilities’. Clinical Psychology and People with Learning Disabilities. Vol 8, Nos 1&2. Pp 26-30. British Psychological Society, DCP Faculty of Learning Disabilities.
After posting last week about our staff awards night and reading this week our chief executive’s blog on same, my mind suddenly fell over an uncomfortable memory. It concerned the contrast between the unspoken freedoms that attending this event represented and the infuriating and humiliating constraints that are the more common experience of most people with learning disabilities.
Heavy Load is a Brighton-based punk rock band comprising a mixed membership of people with and without learning disabilities and their mission is to change the way staffing shifts impact on their social lives. This is what they say
Lots of people come to our gigs, but they cannot stay out late to watch us. They have to go home early because their staff finish work at 10pm. Heavy Load are fed up with this! We think people with a learning disability have the right to stay up late and have some fun! http://stayuplate.org/
The sentiment is well-founded. In whose world do people get carted off home just as the night is livening up and the rest of us are moving on from the pubs to the clubs? Ok so being a little worse for wear at four in the morning isn’t exactly aspirational but it’s probably something most of us have experienced and either come to regret as our priorities changed or stuck with because it suits our cultural references – it’s ‘who we are’ in some way. The point is, along with the hangover and the embarrassing photos on Facebook, we get the choice and people with learning disabilities often don’t.
The Stay Up Late campaign is a powerful movement putting pressure on services to change their attitudes. It isn’t enough to offer kindness and well-meaning support with what’s termed the ‘activities of daily living’ or ADLs, people are entitled to a bit of life in their living, a bit of risk, some kick-ass, testosterone-driven, break your nose on the kerb life in addition to the accessible bank accounts, the budgeting books, and the IT publishing courses.
Most recently, the campaigners took on Channel Four and Big Brother for using ‘the R word’ – and won – so that’s it for broadcasting the pejorative ‘retard’ in exchanges of casual and offensive insult. Good riddance, most of us will say, but what next? Over the years, I’ve seen one term after another chased by discriminatory prejudice and ditched in favour of something neutral, only to find the prejudicial stigma catching up and contaminating another generation of descriptors. Look what happened to ‘gay’ for instance. Grabbed, re-branded and owned by the gay community and worn with pride, it got hijacked by teens and applied to anything they didn’t much like. Even broccoli. One hopes that is a passing fad but the underlying message has to be one of challenge to the stigma itself rather than reliance on shifting perceptions of certain words. To this end, Heavy Load, a very noisy, exuberant bunch of lads of indeterminate age, is putting itself out there and crashing stereotypes more effectively than five open applications on a Vista machine.
They have a long way to go. One of the buttons available for sale on their site says ‘Gay at weekends’ which speaks volumes about the kinds of limitations affecting this group of people. Unfortunately it seems they can’t even be people in any meaningful sense, whatever day of the week it is, unless someone else puts it on the staff rota – Monday 10-12 cooking, 1-4 art and craft, 7-9 be a person. So go on, get yourself a T-shirt, a poster, a badge maybe and show your colours. And the music? Well that’s, how shall we say, enthusiastic. You were warned!
This was the Trust’s third R&D conference, a reflection of the key role research now plays in NHS activity and how recent this incorporation has been. Clinicians have always undertaken research and development, whether in response to highly focused problem solving for a specific issue or as a more speculative process out of which something entirely original was born. The difference now is that, rather than working alone with no formal structures by which to network for new skills and ideas, we are increasingly able to access the vast resources of university colleagues and they, in turn, are able to bring their theoretical understanding into clinical application.
Yesterday we heard from a speaker whose years of research into anxiety had nowhere to go because he was unable to access a clinical population. Links with our Trust have led to the formation of a highly productive group of clinicians and academics with an interest in the causes, mechanisms, and management of the anxiety disorders that debilitate so many people.
There are now several groups like this and, with two universities on our doorstep ( facing each other across the A27 as it happens!), there is no shortage of intellectual and applied clinical thinking that can be brought to bear on psychological and bio-social problems. Dementia for instance. One of the Trust’s research themes is tackling aging and dementia but, until yesterday, people with learning disabilities had not been part of this. Once raised, lights went on around the room and the talk turned to assisted living, healthy aging, and technological support for anyone with dependency problems. Through this, we unearthed interest groups on each side of the road that had been unaware of each other and a productive liason seems likely.
Individuals too became innervated by the day’s focus and new ideas were tentatively put forward as possible projects. Some of those have very definite legs and will be followed up so watch this space! It seems that putting people in an enviroment where ideas and speculation are at the core of everyone’s thinking provides not just the inspiration to think creatively oneself but has the emergent effect of triggering that thinking without explicit reference.
And yes, I gave my presentation too. Not, as I’d thought, just before the main act but at the end when people are dazed and wondering how much more they can take in. Luckily, my talk was light on cogitation and heavy on entertainment, and the picture of the plate of raw liver seemed to engage the attention of anyone who’d drifted off!
So that’s that for another year. Next week it’s the staff awards when it appears that all the members of the research team have pretty much nominated each other! Well, we’re getting fed and given license to boogie so that will do me nicely. Dub, anyone?
This is an experiment. If we post research questions and ideas, would you folks out there, the public, think about them, comment and help us shape our work? Well, let’s give it a go shall we? The first question is about this very thing and it’s on its own page, where it will stay because it’s over-arching.
New questions will be posted here so the comments can follow on in order. And if you have ideas for mental health and learning disability research you think should get some attention, why not tell us? All your comments will be read and, unless they are offensive or off-topic, they’ll stay on the site.