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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Colin Lindridge 1955-2012

We were so sorry to hear that Colin, who had been a leading clinician and manager in our Older People’s services for many years, died on Monday May 7th. His partner, David, asked for the news to be posted on Facebook and there have been many messages there since, expressing the sadness his friends and colleagues are feeling at his passing. People are also talking about his smile, his humour, his dry wit, and his welcoming openness; Colin was not one for maudlin sentimentality.

I knew him far less well than the people who have left their thoughts on that page, but I knew him well enough to recognise his authenticity, his passion for his service and its users, and – from what I heard as I circulated by his conversations – his equal passion for life. His friends, family, and mostly his partner David, will have to go on without Colin. There are memories in abundance on Colin’s page, please go there to commemorate him.

11/05/12 Today there is a heartfelt tribute to Colin from Lisa Rodrigues, our Trust Chief Executive. You can find it here.

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

Spirit of Enquiry Conference, Dec 5th 2011

Spirit of Enquiry flyer imageSussex Partnership Research & Development directorate is holding its third Spirit of enquiry conference on December 5th this year.  Designed to complement our major showcase event in the Summer, this conference invites submissions from new researchers who are Trust staff and partners, Trust staff and partners supported by us to complete research towards Masters or Doctoral degrees, and Trust staff and partners who have conducted research-relevant audit.

Our keynote speakers this year are Professor Val Hall (University of Brighton) on the Research Design Service, Stephanie Goubet (University of Brighton) on statistical methodologies, and Dr Nicky Petty (University of Brighton) on Professional Doctorates. Following the success of last year’s Ethics panel and discussion, there will be a similar opportunity to talk with our panel, about methodology in research.  Natalie Lambert, a senior research fellow at University of Brighton, will be joining us for that session.

The flyer is out now, the submission guidelines for papers and posters will be out very soon, and the draft programme will be available from early November. So, are you coaxing an MA or MSc to completion? Got a Doctorate by the tail and reeling it in? Pinned down some elusive service data that raise interesting questions about practice? We want to know about it!

Keep an eye on @SussResCon,  filter #SoE11, for updates.

Sussex Partnership ‘Spirit of Enquiry’ conference

A&R welcome screenThe Sussex Partnership ‘Spirit of enquiry’ Audit & Research conference is a Trust-wide, multi-disciplinary event. Its primary aims are to show continuities between audit and research, to give new researchers an early experience of presentation, to expose delegates to information and opportunities for A&R development, and to encourage creative and innovative thinking across applied disciplines.

We were very pleased to have two keynote speakers representing different aspects of research and innovation. Dr Bob Brecher, Professor of Moral Philosophy at the university of Brighton and member of the South East Research Committee and the university’s ethics panel, gave a challenging talk about the workings of an ethics committee and then took part in a lively ethics panel. Rob Berry, Head of Innovation and Research at the South East Regional Health Authority, gave a presentation that put in context the research and audit activities of clinicians and delivered a clear message linking best practice to best research. We were also delighted to welcome two expert speakers, Ruth Chandler and Alice Fox. Ruth is coordinator of public involvement and chairs the lived experience advisory forum (LEAF) with Sussex Partnership. She encouraged us to think about the value of bringing in public and lived experience perspectives while acknowledging the difficulties this can present, particularly where there is cognitive impairment or substantial ill health. Alice presented a radically different perspective on research, coming from an arts background but working primarily with adults with learning disabilities alongside post graduate students. She showed us not only how this very different environment could offer opportunities for evaluative and collaborative research, but brought out the value of self generated theories and the opportunities involvement offers for the capacity to form something out of basic elements.

A&R exit image

Four local projects were presented by Renee Harvey (consultant psychologist), David Beattie and Natasha Thorburn (assistant psychologists),  reporting on the STEPPS & STAIRWAYS programmes,  Charlotte Wilcox  (STR worker, Assertive Outreach) on an evaluation of two early intervention studies in Australia and Sussex Partnership (with Dr Rick Fraser and Dr Kathy Greenwood),  Barbara Vincent  (Professional Lead in Nursing for OPMH) and Jane Shepherd (consultant psychologist) on an audit of the management of violence and aggression in people with dementia, and Tony Levitan and Dulcie McCormack (psychology doctoral trainees) on an audit of psycho-educational workshops held for low intensity IAPT workers in Brighton and Hove. You can download a copy of the programme, including posters, here.

The conference was supported by internal communications promotion and also via twitter using the channel #ARconf on our @SussResCon account.

A version of this report may also be found in an edition of the CLRN newsletter.

Imperial College London | Treet TV

treet tv homepage

Imperial College London | Treet TV.

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 treatmenttreet tv clip2 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 treet tv clip3where 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.