Decisional capacity: Good Question demo videos now available

This is from our blog post after meeting with the two people from Grace Eyre who helped us make the videos: Keith and Mikey had their first look at the videos today and it’s safe to say they were pretty pleased with them. I said we would be posting them up on the site by the end of the week and Mikey wanted to know where that would be. Keith said that they would be on the internet so ‘everyone’ could see them. He was even more pleased to think that his rather fine self would be preserved on film … Continue reading Decisional capacity: Good Question demo videos now available

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Good Question interview prompts go live on Ether Books

I get very excited when something I wrote is published. Mostly these days, that’s fiction but today Ether has gone the extra mile and taken a chance on something quite different. Capacity to consent is a difficult quality to assess but the law requires us to do it. Mostly, clinicians have been using rather haphazard methods but since 1999 I’ve been developing, with colleagues, a more reliable approach. Good Question is the result, and today a set of prompts for interviewers went live on the Ether app. The prompts can be downloaded free to iOS and Andriod devices (with Kindle … Continue reading Good Question interview prompts go live on Ether Books

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Assisted suicide

A contentious issue and back in the news today. While suicide is a deeply unpalatable idea, for some, it feels like a real and only solution and I recall a discussion we had a while ago about how to identify people with learning disabilities whose pain and distress were so extreme but whose lives were so controlled that suicide was not an option. It is hard to be clear, but if we are to make any headway with matters of choice, consent, and ownership of our own bodies, we must step up to the plate and discuss it openly. This … Continue reading Assisted suicide

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Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities

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 … Continue reading Using Virtual Reality to Provide Health Care Information to People With Intellectual Disabilities

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Samantha Backler – died of starvation

Samantha was a 29 year old woman with cerebral palsy who was in the sole care of her mother. It is thought that she died as a result of being unable to care for herself or to call for help when her mother died suddenly. This was in 2010. There had been concerns since 1998 after Mrs Wolf, Samantha’s mother, was admitted to hospital with mental health problems, after which support from GPs and social services was increasingly denied. Mrs Wolf, apparently, was afraid that Samantha would be taken away from her. (St Albans Review inquest report) I can understand … Continue reading Samantha Backler – died of starvation

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