After four years of writing, editing and re-editing, my book is finally published today, and launches in London thanks to the generosity of Nesta who are hosting the event, at which NHS CEO Simon Stevens is also speaking. We’re going to lose some out of town attendees to the snow, but so far London’s transport system seems to be holding up fine and we’re going ahead. If you are not able to be there, there will be a live stream from just before 6pm on this page of the Nesta website. The stream will then stay on that page. Here is the beginning of my blog on the Policy Press website about the book:
The NHS was designed in the 1940s for brief encounters: healing us or fixing us up. It often does that astonishingly well. But now 15 million of us (most of us at some point during our lives) live with long-term conditions; three million with multiple long-term conditions. We cannot be healed or fixed, we can only live well, drawing on state support relatively little, or live badly, drawing on state support heavily and falling repeatedly into crisis. That long term, increasing reliance on intensive support services is not only likely to feel miserable to us as individuals and families, it drives long term financial meltdown which will bankrupt our service economies, even if they survive the current period of austerity.
So we need a different relationship between people with long term conditions, their families and the services they turn to for help. But health and care leaders continue to talk and plan as if the health and care system was fixable by streamlining what we currently do, integrating various kinds of organisation, or making better use of tech. This is because, whether we use public services, work in them, or lead them, we remain locked into seeing people who need support as illnesses, impairments, problems, risks, not as people who can and must share at least some of the responsibility for their own wellbeing. We do not recognise that people who live for years or decades can become more expert in what works for their wellbeing than many of the professionals who necessarily dip in and out of their lives. Family carers provide more care than the state, but even they are not recognised as vital members of a wider caring team, who might need knowledge, training, equipment and emergency back up just as much as their paid colleagues.
To unpick this [carry on reading the blog and also Edward’s Shared Lives story here].
Escaping the invisible asylum 