large conservatory-style room for meals

Another cross-post; still not as exciting as CSI but an update on a previous cross-post so pretty much obligatory.

Let me say right off that the staff of the Blue Bell Hotel in Burton Agnes are as warm, friendly and accommodating as anyone could wish, and the rooms are very well appointed. For family reasons, I’ve had cause to stay there on several occasions over the last couple of years and so comparative standards have been easy to generate. The last time, earlier this month, we hit a drop in the usual quality of service, and all of it due to lack of attention to detail. The big things were right, as always, but the little things – not so much. I’m going to list them here; not in a belated hissy fit of unreported affront, but because when I gave this feedback personally to the manager, his acceptance could not have been more gracious or his promise that I would see a difference next time, more sincere. And given that I had just told him he looked like the handy-man rather than the front-of-house chap in charge, this was quite an accomplishment. Here we go then, but please take a look at the *positives too.

1. No hot water in the room. I discovered this late at night and waited until the morning to report it. The staff said that, had I mentioned it at the time, they would have moved me immediately to another room, and I know they would have done that. I had unpacked and was less concerned about being clean than collapsing under the duvet!
2. One of the light bulbs at the bedside was out.
3. The soup course had arrived without a spoon, as did the boiled eggs the next morning.
4. Breakfast had been moved from the large, airy conservatory to the brasserie. This is more cosy but also out of the way of staff traffic and so I had to go looking for someone to get coffee, marmalade and the like.
5. A small point I didn’t mention was that the tables for one were set with the guest’s back to the door, which is not most people’s choice. We generally like to see who’s coming into our space. I rearranged mine.
6. I was offered shower facilities in the room adapted for people with disabilities. This is a decent sized room with plenty of floor space and the heating had been put on earlier for me. But one of the glass shelves in the large wet room was tilted at such an angle as to be unsafe. Any glass item placed on it was at risk of sliding off and maybe smashing on the tiled floor.
7. The emergency cord in the disability room had been tied up and would have been out of reach of a disabled guest who had fallen or was sitting on the toilet and needing urgent assistance.
8. Standard and Superior rooms. Now here’s a thing – five of us stayed there on the occasion of my father’s funeral. I had booked four Standard rooms and my cousin had booked a Superior room because that was all that remained at the time. On inspection, we could not see the difference but it turns out that, in always asking to avoid the two rooms at the front of the hotel where double glazing is not permitted and both traffic noise and headlights cause disturbance late into the night and from very early in the morning (this is farming country), we had also been allocated Superior rooms. This means that a Standard room is one in which you might not be able to sleep, while a Superior one is likely to be quiet and lacking frequent, intermittent light pollution. I discovered this when I questioned the bill and argued that, as the primary purpose of a hotel bedroom is sleep, the ones where this is possible should not be regarded as Superior but Standard.  What remains is how to describe the others (rooms 13 & 14, since you ask). I have suggested blackout curtains so that the intrusive light from full beam headlights would be excluded. Anyone who can sleep on a clothes line or has the kind of hearing impairment that renders traffic noise irrelevant, should have no trouble sleeping with the implementation of this low cost, simple adjustment.
9. Finally, the anonymity of the manager. I’ve seen him at all times of day and he appears to be very hands-on. As he pointed out, he is the one who fixes the boiler, and so he probably spends quite a bit of time in the hinterland of the hotel. However, front of house is also an important job because it models dress standards to the staff (who all have a uniform), and leaves guests and visitors in no doubt as to who has the authority.

Every one of these problems is about attention to detail; checking rooms thoroughly before guests arrive, making sure the right cutlery is available, making it easy for guests to access available items, and adhering to a dress code commensurate with the role. They promise to put this right, so if you visit before I do, check and let them know if they haven’t come up to scratch.

*Now read the good things:

1. This is a country hotel way out of reach anything that might be called a conurbation and so it is in farming country. There is a large lawn area to the back of the hotel and a friendly horse in an adjoining paddock.
2. There is outdoor seating in a simple patio area.
3. Parking is bliss.
4. Staff will help with anything at all – including changing the menu if what’s on offer doesn’t suit.
5. The chef will come out and discuss the ingredients of a dish, add something or leave it out if you wish.
6. There is free wi-fi, now the first thing I look for in a hotel.
7. Staff have a smart casual uniform so you know who’s who and who to ask for things.
8. The rooms are spotless and well appointed with flat screen TV, double or two single beds, good wardrobe space, writing desk, storage, hair dryer and bath/loo/shower room with shampoo, soap, and shower gel. Take your own talc though.
9. There is a bar, which is the local pub for people who live nearby. The bar man knows about the ‘legs’ in a glass of wine.

These are the reasons I will go back. If problems persist or recur - well, I’m there often enough now to be almost family so on the verge of feeling free to nip into the kitchen and rustle up some eggs for myself, if necessary! I won’t be hesitant about mentioning a glitch, don’t you be either. This is a place that wants to get it right and they will listen.

And Alex Polizzi? Watching The Hotel Inspector was like taking a course in how to point out flaws in the nicest possible but appropriately assertive way. Brits are not good at this; we creep away and whinge to our mates, or deliver an anonymous rant to a website. Or we go for a tirade modelled on a 1950′s headmaster, or a wrongly red-carded premiership footballer. These are not at all helpful. What people in the business say is ‘if you like what we do and how we do it, tell everyone; if you don’t – tell us’.

Hopefully, we will be back next year. Two guaranteed invitations to present will go to successful submissions from Jo Lee and Corrie Neilson. Jo is a senior physiotherapist with the Brighton & Hove Learning Disability team. Her paper, titled Passive Therapeutic Standing in the Neurologically Impaired Population, is a part of her Master’s dissertation with the University of Brighton, for which she earned a Distinction. Corrie’s paper,  An exploration into Second Life use with a Facially Disfigured Avatar, describes the research component of her Master’s in Foundations of Clinical Psychology & Mental Health from the University of Sussex, for which she too received a Distinction. Corrie has been a volunteer with Trust learning disability services and a care worker for adults with challenging behaviour in community services. She hopes to undertake Doctoral training in clinical psychology.

These are high quality pieces of work delivered by professional/aspirational clinicians at an early stage in their experience as researchers. The future of NHS innovation would seem to be in good hands.

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

Elsewhere, Celia Heneage will be presenting a workshop with Nicky on group work, and Peter Baker will be talking about his work in positive behaviour support. A pretty good turnout for Sussex Partnership. Break a leg, chaps!

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.

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?

Sussex Partnership is well represented.

Peter Baker is presenting his work  on positive behaviour support: Positive Behaviour Support Clinical and Process Outcomes: The P-CPO project.

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/

Image via Wikipedia

Ok, so I’m on leave and taking a break from writing a 2000 word creation-myth story, as you do. I was at two meetings recently where the impact of research was discussed. The first was to do with demonstrating the value of research to organisations; the second was with a group of service users with learning disabilities (Powerful Trainers). Not surprisingly, the prevailing interpretation of ‘impact’ in these two discussions differed significantly, and the problem of resolution has been bothering my thinking genie ever since.

As a clinician whose main output has been what might be termed ‘armchair’ discussion items rather than reports of active research, my concern has been to write material that might make a difference to practice by getting people thinking or offering new models of working. I never considered impact; beyond the notion that someone might pick up my article and do something with it. One of my first publications was the co-edited book (with Alexis Waitman) ‘Psychotherapy and Mental Handicap‘, published in 1991 at a time when talking therapies for people with learning disabilities could only be accessed at The Tavistock, in London. That resulted in a series of workshops and presentations across the UK; the seeds of change were planted, and now this kind of therapy is routinely available. I would consider that to constitute impact, but does it?

In research circles, and so in organisations to whom researchers are accountable, the key measure of impact is citation, and preferably from within a journal that is, itself, frequently cited. Essentially, this means getting your paper accepted by a particular stable of peer-reviewed publications so that it will have a provenance of citation and so, it seems to me, will be more likely to be cited by someone else. Including yourself. Yes, you can cite your own papers and this counts. The argument in defence of this practice is that some fields are so highly specialised that the pool of possible referents is very small and you could hardly avoid citing your own work. The counter argument might reasonably be, well heck, how objective is that, then?

Supposing we accept for now that this is a good way of measuring impact. After all, acceptance by a prestigious journal like Nature is more likely to carry a stamp of quality and scientific rigor than something you read in the local paper, for instance. You might imagine, then, that there might be some sort of follow-up on readership (not subscriptions, actual readings) to evaluate the way in which the article is being used. Well, no, it seems not. Impact is calculated mathematically - this over that – to arrive at a value.  These are means, averages, over a specified period of time during which the number of citable articles cited by other citable journals is counted. There is also a PageRank Algorithm. You don’t want to know.

If you look at this with a degree of cynicism, what you might see is an incestuous cycle of citation-seeking among journals that might or might not ever see the light of day from the desks of the more applied practitioners among us. Personally, I am at a loss. High impact, as it is currently defined, feels remote, insular, and meaningless. Further, my book with Alexis would not have counted, although it seems to have had a major impact on practice in this country and is still on the reading list for many therapy courses worldwide.

I asked our service users at the second meeting, what ‘impact’ meant to them. They said ‘Tell us on your web site’, ‘Send it out by email’, and ‘Put it on twitter‘ because, they said, ‘someone might do something with it then‘. They wanted to see some action coming out of the research; some change, a new way of doing something. And they wanted to be part of that. Impact, for them, was much more visible, accessible, tangible, and isn’t that just as accountable? After all, our funding bodies ask us to make clear our plans for dissemination – not publication, note – on the application form, and they want to see how we take this back to the public.

It seems to me that the bodies calculating impact in terms of divisibles might benefit from liaising with the ones working on the communication of science to the public. Putting clinical research in particular right back in the hands and minds of service users, public, patients seems most likely to deliver meaningful impact than counting beans in a very small box.

So, over to you. What does impact mean to you? You should be asking us to keep the integrity of our work, make sure it is robust and properly conducted. You have to ask us to make sure it is meaningful. But after that, what should we see as ‘high impact’? What should we be aiming for? I don’t think this is either/or so let it rip!

This article makes the case, with examples, for enduring responsibility by publishers of whatever kind in the governance of the material they put out.

For me, there is also the matter of impact and what that means. Academics seek publication in ‘high impact’ journals but clearly, these are not the ones being read by the public. The ones most people track down are essentially ‘low impact’ but, ironically, probably have more actual effect than the rarefied publications to which we aspire. So what, exactly, is a ‘high impact’ journal? Well, let’s keep that for another time. For now, ensuring the eradication of discredited or just pre-modified material is a fine objective.

Search Google for the phrase "ileal-lymphoidnodular hyperplasia," and you are likely to find several free copies of a popular medical article hosted on public websites around the Internet. The problem is, this article was retracted in February 2010, the result of a investigation that ultimately found the paper fraudulent and stripped its author of the right to practice medicine. If the medical terminology of this paper is still confusing you, thi … Read More

via The Scholarly Kitchen

On March 17th, an extraordinary event took place at the Lighthouse in Brighton’s North Laines. The R&D department at Sussex Partnership has been developing ideas for projects – research and clinical practice – that seeks digital solutions to health care problems. Second Life is already a research environment for some of us, and more projects are either underway or at the work-up stage. We are also keen to capitalise on social media for communication with staff and service users, and to make use of apps for community support. For clinicians, the ideas come from practice. We can see the problems up close and we know what we need to do to address them We’re not that tech savvy though. We are not developers or designers. On the other hand, the tech savvy digital community doesn’t necessarily know what kinds of products we need, or how to access a user group to trial prototypes. From a very understated meeting with Phil Jones of Wired Sussex at which we speculated about a meeting of clinicians, academics, and entrepreneurial developers, came Wired for Health. Phil took that basic idea and produced an event that exceeded all expectations. No, I’m not going to be cool about it, this was very very exciting! Chaired by John Worth (Worth Digital)and Lynn Smith (NHS South East Coast), presentations from the health and business communities preceded a superb networking session from which we pretty much had to be evicted as no one wanted to stop talking when time was up. We heard from Sarah Pearson (Health Psychologist), about the difference between what people say they do and what they actually do (e.g. belieiving they watch very little live TV and, in fact, watching over 60% live TV), which has implications for self report about health issues. We also heard from Ribot, a small company that has developed a phone app to assist people with dexterity problems (the Threedom phone). In fact, this was the occasion of its formal launch, so the glasses of wine that were waiting upstairs could easily have been deployed ahead of time for a rollicking good crack over the bows! Dave Taylor (Imperial College) and I presented a live look at the medical training environment and our Brighton simulation, used for the study with people with learning disabilities. This being a digitally capable venue, there was no trouble getting a good broadband connection and even Second Life behaved itself, so that the audience got a good look at the potential of virtual worlds in health care and research.

Upstairs in the foyer of the Lighthouse, Jo Roberts (Wired Sussex) had set up media nooks for particular interests. Virtual worlds, social networking (and yes, we’re on twitter), and webs and apps. Somewhere, I saw small food items being passed around but was never able to shut up long enough to take advantage. If you can measure success in terms of the croakiness of your voice the day after, this was off the scale. Mine was a husky growl for two days as a result of all the talking.

And the outcome? Wired Sussex is preparing a report for their funding body. Productive relationships were begun and are bearing fruit. Ribot is in touch with a posse of service users whose dexterity is challenged by motor, anatomical, and brain injury factors. We, R&D, can begin to hope for some major steps forward in our digital research and product development capability.

Thank you John, Phil, Lynn, and Jo.

Photos by Wired Sussex

#WiredHealth