So, councils will argue they're acting lawfully in determining that if the cost of supporting some people to live in the place of their choosing is - in their view - too great, they can offer support only in a congregate care setting, even if that goes against the person's wishes They will say they are permitted to take into account resources, and that they are required by law to balance the books. But they are also, as agents of the State, bound by the UK's international human rights treaty obligations (Article 19 UNCRPD) un.org/development/de…

In both the health & social care fields the word 'independence' overwhelmingly means 'living with the minimal support' (self sufficiency), not 'control over support' (autonomy) as advocated by the disabled people's independent living movement 1/ This seems particularly marked in relation to the increasing focus on new & emerging technologies, advertised as 'promoting independence', but where questions of individual choice, consent, co-design, privacy, ownership of data are largely absent 2/

Been reading this really interesting thinkpiece by @simonjduffy on the merits of 'quality of life' as a focus for disability policy & practice in the EU. Well worth a read (for my UK friends too) citizen-network.org/library/the-pr… I've led several pieces of work exploring the progress being made across the EU towards the ambition of Article 19 of the CRPD (e.g. ) & (and more recently, to be published)disability-europe.net/theme/independ…
wearelumos.org/resources/open…

At the start of January my mum collapsed. Neighbours called an ambulance, which arrived relatively quickly & she was taken to A&E where she spent the next 27 hours on a trolley in a corridor before being moved to a ward. She had had a minor stroke. A&E was like a field hospital in a war zone. Echoing what others have said, despite all this A&E staff remained patient, kind, good-humoured & courteous. My mum then spent the next 8 days in various wards in the hospital. Hospitals are not great places to recover.

From what we know of the plans it falls far short of the dementia strategy @AlzSocCampaigns were hoping for, in both focus & scope. People living with dementia now are not really the focus of this strategy - it's about preventing the diseases & conditions that give rise to it

https://twitter.com/alzheimerssoc/status/1617894741634609152

Laudable tho that might be, the lives & wellbeing many hundreds of thousands of people with dementia & their families seem not to be the focus here. I hope perhaps @AlzSocCampaigns @KateLeeCEO might put their considerable talents towards securing a social care strategy instead.

So the Archbishop of Canterbury is talking about *drawing on* care and support. My work is done @socfuture @AnnaSeverwright @EquallyOurs #FrameOn #AnEqualLife #ReimaginingCare

https://twitter.com/JustinWelby/status/1617878419114426369

Just a quick explainer here. When we (@socfuture) did our work to develop a new vision & narrative, we'd noted how social care was typically talked about as a place or destination e.g. 'people going into social care' socialcarefuture.org.uk/wp-content/upl…

We're at a really dangerous moment for people who have cause to call on the NHS or draw on social care, not simply because those 'systems' or so overstretched, but because as at the start of the pandemic, we're elevating them & the pressures *they* face as the primary concern We might assume these are entirely aligned goals, but as we saw from discharge to care homes at the start of the pandemic, they are not always. Political & media optics are shaping strategy e.g. buying tens of thousands of care home 'beds' when only suitable for a small %

Today seems like an important moment to repost this blog, based on our extensive research & development with people who draw on support to live our lives - some basic rules when talking about social care #LivesNotBeds socialcarefuture.org.uk/want-to-help-c… 1. It's about us & people we love & care about, not beds, visits, packages, blockages, flows
2. Be about creating something good, not something less bad
3. Sell the brownie, not the ingredients - how does social care improve our lives?

There are people stranded in hospital, being made less fit & well by that experience, not because they can't go home, but because diagnostics are logjammed so decisions about their treatment/fitness to go are being delayed & if they did go home, their only route back is via A&E And noone wants to go back to the start of that queue. So...invest in speeding up diagnostics & where on balance it's safe to do so, discharge to a quick outpatient appointment. Otherwise the irony is that the NHS is making more people unwell than it is aiding recovery.

Some further observations on the historic departure points when it comes to 'person centred care as it relates to people with dementia & people with learning disabilities - comparing Kitwood's 'essential psychological needs' with John O'Brien's '5 accomplishments' The key omission in Kitwood's list is, for me, choice & control, including over where & with who to live, and it's the loss of control that permits institutionalisation - physically & behaviorally - and the 'malignant social psychology' therein.

Despite us having one piece of social care legislation, centred on wellbeing & person-centred support, it's clear that our thinking & expectations on social care & older people are dramatically different from that concerning working-age people. Is this because there are objective differences in relation to what people are looking for & need, linked to age, or is it about ageism? Or 'stageism' (social care in older age being linked to declining health & dying)? Or impairment (dementia)?

One of the most important tips @anatosaurus shares about communicating effectively for social change is to 'sell the brownie, not the ingredients'. That is, what are the benefits we'll experience in the way we live our lives as a result of changing a policy or practice? To those ends, I'm struck that, when talking about 'personalised care' we constantly slip into talking about the ingredients - personal budgets, person centred planning, co-production, strength based approaches, social prescribing, personal assistance - not the 'brownie'