In health and social care we're great at talking about involving people, but seldom is that involvement truly inclusive, putting people who receive care and support in the driving seat.
When I first began working as a dementia consultant for MacIntyre in 2013, I was struck by how their learning disability services encourage the people they are supporting to be front and centre in their work. This is in sharp contrast to many traditional dementia services that do things 'to' people rather than 'with' them, and provide independence sapping 'care' rather than a more holistic model of 'support' that promotes what a person can do.
With this in mind, marrying the worlds of learning disability and dementia together in MacIntyre's three-year, Department of Health Innovation Grant funded 'Dementia Project' has, I believe, the potential to be transformational. 'Innovation' has many interpretations in this technological age, and 'transformation' is bandied around as frequently as 'integration', but for me the power of people is the ultimate example of all of these.
MacInytre Dementia Project Team - © MacIntyre 2016
For the learning disability world the project seeks to provide much needed resources to upskill health and social care professionals who are supporting people with a learning disability and dementia (or who are at risk of developing dementia). There is a particularly strong link between Down's syndrome and dementia, with a third of people with Down's syndrome developing dementia in their 50's.
For the dementia world, which has taken some significant strides forward with involving people - most notably through DEEP (Dementia Engagement and Empowerment Project) and DAI (Dementia Alliance International) - the project's focus on keeping the people supported by MacIntyre at the heart of this work is a refreshing example that I hope other health and social care providers will follow.
Learning from people with personal experiences of living with dementia, or people directly affected by dementia, is vital in informing professionals. Nothing engages and educates like the messages of personal experiences. Forget dry conferences populated by people with qualifications in dementia, and switch on to the voices of personal experience who make you think, pull at your heartstrings, and remind you why you came into the world of dementia to make a difference.
In this spirit, MacIntyre's Dementia Project is engaging with the people they are supporting in lots of different ways. Go to a dementia conference in the next few months and you may bump into a person MacIntyre support, accompanied by a staff member working on the project - you'll know who they are, they'll be the person asking the direct question that everyone else wants to ask but is too afraid to.
Rachel speaking at a conference - © MacIntyre 2016
Go onto social media and via @DementiaLD you'll find photos and updates on MacIntyre's 'Keep Going... Don't Stop' Group. Its membership is comprised of people being supported by one of MacInyre's Lifelong Learning services, and meets monthly to contribute ideas, share experiences, and to help create resources that support the project.
Planning the next Keep going.......Don't stop meeting at Chesterfield. Making great progress,sharing good ideas. pic.twitter.com/vHYzFfzqq3
— MacIntyre - Dementia (@DementiaLD) August 1, 2016
Behind the scenes, MacIntyre's 'Checkers' Group, whose members are people supported by MacIntyre, review the resources that are being created to help ensure that 'Easy Read' documents are fit for purpose. Experts by Experience are taking a hands-on role too, visiting services to review the environments where people with a learning disability and dementia (or suspected dementia) are living to see how dementia friendly those environments are.
Then there is the media engagement. One of the unexpected developments in the early months of the project has been how some people MacIntyre are supporting have embraced publically talking about the project, its importance, and what it hopes to achieve. This has included work with the Aged Care Channel and Arc Seven TV.
Seeing how Rachel and Rosie have blossomed in their new role as media ambassadors is fantastic, and again testimony to the power of messages about health and social care issues when they are conveyed by people who are directly involved in receiving care and support. In the months ahead I predict we will hear a lot more from Rachel, Rosie and their compatriots, and I for one really look forward to their wisdom and insight.
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