Wired for Health

This post was due up last week, then the news about Samantha Backler came through. She deserved her time in the spotlight.

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





























You have a question, where do you look for answers?

Tick all that apply

It’s becoming pretty clear to anyone who isn’t living in a cupboard or a Jane Austen serial that there’s something of an information explosion underway and that finding what you want to know could be exasperating to say the least. Where do you start? Who do you ask? At one time, our main source was the newspaper held proprietorially by the man of the house while he puffed quietly on his pipe behind his printed screen. Then there was the TV and the Six o Clock News. We pretty much stood to attention for that, newscasters, as they were called, being all done up in dinner suits and dicky bows. Life was simple, structured, and predictable. You knew where you were. If the PM came on the radio at some ungodly hour, war had broken out, no more and no less; he wasn’t there talking about his preference for Gorillaz over Dizzee Rascal.

Twenty-first century seekers after knowledge are spoilt for choice. The papers still exist although now you can download them to portable gizmos like the iPad, their days would seem to be numbered. TV news is available in perpetual hourly loops with little of value being added by non-witnesses (the bloke who lives across the road from the woman who asked someone else what happened) cornered in desperation by reporters with ‘windows’. Then there’s the iPlayer and all those other catch-up portals, website home pages with their news snippets targeting what they see as their particular demographic, and the plethora of search engines. Oh and Twitter. Twitter with its 140 character micro-blogging facility, its adoption by the vacuoso who want us all to know about their new neighbour who is, like, totally fit. That Twitter. Surely Twitter can’t be used to aggregate information can it? Well yes it can, yes it does, and yes we will if we know what’s good for us. Twitter use, small still by Facebook standards, has increased its membership by a reported 1000% plus year on year. People use hash tags (#) to label and search on topics of interest, and create lists of followers to which content can be cascaded.

Businesses will ignore this to their cost but what about health services? What does social networking have to offer health professionals, patients, carers, and an interested public? I suspect, a great deal but first we need to ask some questions. Up top on this page should be a poll about how you go about tracking down information. Down here should be another one about how to use these platforms to our mutual benefit. Please take a moment or three..

Tick all that apply

Specialist, palliative, and rehabilitative care for people with learning disabilities

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.

You Tube for Grownups

screenshot of YouTube EDU siteYouTubeEDU. Why didn’t I know about this before? It’s what I’ve been looking for – a legitimate video upload site that caters for professional communities and allows dissemination of graphically driven visual information. Many of us struggle with organisations whose IT systems block what they see as primarily social sites but, increasingly, relevant information is being put out in video format. For some, this is absolutely the best medium – think of the psychological phenomena of visual illusion and confidence trickery, for instance (see Richard Wiseman’s site for much more on this) – and for others, it provides compelling support for otherwise less accessible text.

University College, London has its own TV channel there (and it’s thanks to their rss for this post). It can’t be long before other major players in the research, education, medicine, and business worlds see the potential for their own output. I hope the NHS gets to grips with this quickly, the possibilities for staff and patients seem unending.

UK NHS: we look after vulnerable people

NHS logoThere have been some recent re-tweetings from my US friends that exemplify the paranoia around their health care reforms.  Somebody famous (that I don’t know) is threatening (or promising) to leave the country if Obama succeeds on the grounds that it’s a license to euthanise innocent citizens, and another – Sarah Palin – has apparently jumped ship and gone to Canada for treatment. Let’s be clear, I have axes to grind.

First off, I was born the year the NHS came into being. I was one of the first babies whose mother was guaranteed medical attention without having to pay and so I was privileged to have the best care available at the time without cost to my working class, poorly paid family. Before that, the babies of parents such as mine could expect no help other than that a neighbour might be able to offer. Babies such as me often died and I didn’t.

Second, I have worked for the NHS for almost 40 years as a nurse and then as a psychologist so I’ve had long experience of it and all its failings as a deliverer of services. It is not perfect. Sometimes it has been brutal and uncaring, or at least the small local culture in which I was working seemed so. Most of the time though it has been overwhelming in its devotion to the principle of equal care for all and unstinting in its striving for better quality and standards in that service.

Finally, as a professional I have had exceptional training that has not been dependent upon a medical view of the world but has, in each of its incarnations, developed independent and critical philosophies of care that integrate with, challenge, and support medicine in its key role of health care delivery and the science and art of ill-health prevention.

I am not prevented from working in private practice. I am not prevented from seeking private treatment. I am not obliged to do either. I am paid well, I receive training, I engage in research, I work with some of the most vulnerable people in our society, I am proud to be both a deliverer and a recipient of NHS services. I am not afraid of being ‘retired from life’ or cast aside because I can not pay. The multi professional profile of our services that ensure medical opinion is only one of several perspectives on the ethics and cultural values of good care are protectors and safeguards in this.

Of course there are mistakes. Of course there are bad people and poor practitioners. And of course we can’t afford everything. But what is the cost to our morality as a society if we will not give to the poorest and least able the same benefits we would offer to our directors, executives, and landed gentry? One of our service users, a woman in her 40s whose intellectual level is somewhere in the lowest 2%, recently had heart surgery to replace a faulty valve. My team, her carers, and the hospital staff took great care to enable her to make the decision herself and to give her own valid consent to treatment. It was lengthy, painstaking, creative and resourceful but she understood and she was proud to be doing this for herself. That dignity is impossible to cost and no one asked us to do so – it was our job and her right.

This is a personal view and it comes from a place in which there is no unnecessary fear of becoming ill or needing treatment. I hope that, whatever you achieve in the US, it gives you the best of our system alongside the best of yours so that you don’t have to fear illness for monetary reasons either.

Here endeth..

Outing SL researchers

Second Health by ICL A&EVery interesting meeting at Sussex uni this afternoon with academics and clinicians from Imperial College, Brighton uni, Sussex uni, Brighton & Sussex medical school and Sussex Partnership looking at using SL as a training platform for medical students. So many SL afficionados, so much other research going on, so few spring chickens doing it! Contrary to possible expectations, these SL researchers seemed to be the antithesis of the stereotypical young male gamer and came in at the older, female, rather sensible but highly creative end of the spectrum. Eat your heart out, WoW! Second Health by ICL HDU

Catching up

Got to see our incomplete participant today. Not that she was incomplete, you understand, her session was. It’s not easy to elicit memories of experiences people didn’t have and the eliciting part comes next week. Hopefully, she won’t feel driven to jump ship before we’ve finished that!

Migrating from MySpace

Today I’m having a rationalising session and that has included coralling several of my disparate online presences (if there is such a word)  into one enclosure. WordPress has a nicely manicured lawn, tidy edgings, and neighbours with eclectic tastes so it makes sense to move in and put up the curtains. I came here on a visit from MySpace, hauling along a nascent blog offering views on the world that may or may not be shared by others. It liked what it saw and pitched its tent so I went back to fetch Dem and now I won’t get lost making my way in the dark between the two late at night. If you’re here and wondering what the heck it’s all about, go to the MySpace link on the right and entertain yourself with a bit of catch-up. Having got the hang of tweeting without inadvertent indiscretion (mostly), I have become more inclined to post snippets for public consumption and those can be found also over on the right of the page.

Off to design a SurveyMonkey survey (well what did you expect?!) and take a tour of the Brighton sim before we go back in tomorrow with a study participant.