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.