‘Heavy Load’ and the ‘Stay Up Late’ campaign

stay up late clipAfter 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 picture from Heavy Load's blogand 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!

Pictures from Heavy Load and Stay Up Late campaign websites.

Sussex Partnership Search for a Star

staff awards posterOn Thursday June 17th, about 500 employees of Sussex Partnership, a 5000 strong organisation, gathered in posh frocked, tuxed and bow-tied unfamiliarity, at the Corn Exchange in the centre of Brighton for our annual awards ceremony. This is a night of celebration, a way for outstanding achievement and exemplary professionalism to be recognised so that everyone from volunteers to leaders has chance to excel. And this year, for the first time, there was an award for Excellence in Research which just goes to show how far we have come in getting clinician-led research on the map.

We were all there, largely because we had pretty much all been nominated one way or another, and so, seated at Oscar-round tables and rehearsing our acceptance speeches (gather, gather!), we waited for the announcements. Not that waiting was any great hardship. Elegantly presented food in quite reasonable quantities adequately filled the gap although one of our number was clearly less than impressed by the artistry and would have traded the lot for bangers and mash faster than you could say multi-factorial randomised groups design. No, me neither.

There were two delightful surprises in the run-up to our category. First, the learning disabilities speech and language team won the Team of the Year category, and second, our own CLDT volunteer and one of my nominees, Kuljinder Dhanjal, received the award for Volunteer of the Year for her outstanding contribution to our work. Excellent!  Then a friend took the Lifetime Achievement Award just before retiring after many many years NHS service and was presented with a box she could barely hold onto!

Finally, our turn – who would it be? Three of the ten nominees had been shortlisted – the Early Intervention in Psychosis Team, Mark Hayward – Director of Research, and my jolly amazed self. Well, there was no argument really; Mark established, structured and developed the research directorate without which the rest of us would have been in no position to be nominated at all. In fact there most probably would not have been a research prize to win, which is why I had nominated him in the first place. A reluctant hero, Mark was presented with his award by our Chief Executive, Lisa Rodriquez and the Trust Chairman, John Bacon and was subsequently hauled off to have his photo taken. He just may have been regretting going for the causal look at this stage but, this being research, expectations are generally driven by the dog-eared boffin look so on that count, we probably all came out quite well!

What also scrubbed up nicely was the knees-up that followed the ceremonials. A very fine band, Cat with the Hat (or some permutation of same), set up a blues & soul racket that had people of previously dignified demeanor getting it on down, moving it on up, and shaking more tail feathers than might be found in a free range chicken farm. Neither age nor aptitude got in the way of the serious shindig that followed and most of us only gave up when it became apparent that we’d need to phone for taxis before the last layers of hearing had been completely peeled away. My ears buzzed for two days, reminding me of the aftermath of an evening at the Hammersmith Odeon in the company of Hawkwind. Ah, the deafness of cool! At least when I’m muttering about people not speaking up and maxing out the volume control, I’ll know it was down to a life well lived and not just casual deterioration while I wasn’t paying attention, I’ll have earned my impairment!

Sorry, what?

Sussex Partnership research conference

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?

Research & Development conference

Big day tomorrow. The R&D team will be standing to attention, fingernails scrubbed and hair neatly parted on the left (right, for the lefties – if you get my drift). It’s our annual conference and an opportunity to let the rest of the organisation and local media know what we’re up to in research terms. Prof Louis Appleby CBE is a reformer of mental health services and our keynote speaker and there are others from the fields of autism and academia – Prof Hugo Critchley of Sussex Partnership and the UCL Institute of Cognitive Neuroscience, and Prof Graham Davey of Sussex University. In a full programme, including papers on the effect of singing on brain function, and sexual healthcare for substance misusing women, the national inquiry into suicide, and the work of a neurobehavioural clinic, I will also be delivering a few words. My paper is, not too surprisingly, on the role of technology and networking in developing, collaborating, and disseminating research. I’ll also be leading a workshop a little later on getting started in research, aimed at clinicians with ideas and motivation who haven’t quite found their way onto the appropriate track. It can be difficult to juggle clinical priorities against something that may seem to be something of a luxury but involving frontline workers is the best way of ensuring that research is as directly linked to service needs as possible. A major funding stream argued, when challenged about diverting clinical energies in this way, that medics, nurses and other clinical staff have been inventing and developing new techniques, devices and care programmes for many years. The difference now is that, instead of those products being bought out by private companies and even other countries, they can become national health service assets that will be used to patient benefit and also possibly become income generators in their own right. I’m proud to have a small part in that new wave of activity. Even more so because my research involves people with learning disability who are participating on behalf of the rest of us rather than being the objects of study in themselves and that’s a bit of a first.

Of course the last time I gave a presentation involving technology, there was a power cut and, had it not been for some sort of generator kicking in at the last minute, it would have been delivered a cappella. I wonder how Louis is at close harmony..?

Research question #2

There has been quite a lot of viewing of this item so I thought it might be useful to put up an illustration of what I mean by public involvement in research. Here’s a possible situation to think about. It isn’t an actual study but it parallels some of the problems that can arise:

Supposing a research team looking at stress management approaches a small workforce, 10-12 people max, and says they want to teach stress management techniques to everyone. Then they want to come in regularly over the next few months to give them questionnaires and interview them about how that’s working. All but one person thinks it’s a good idea and wants in but one person would rather not take part.

Here are the questions:

1. What thoughts do you think it might bring up for the person who doesn’t want to take part?

2. What can the research team do to make it easy for the person to opt out?

3. What else would you like to say about this situation?

Get Involved with Research

crowdThis 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.