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.