{"id":1558,"date":"2024-05-21T17:21:39","date_gmt":"2024-05-21T16:21:39","guid":{"rendered":"https:\/\/blogs.gov.scot\/participation\/?p=1558"},"modified":"2024-05-22T14:33:54","modified_gmt":"2024-05-22T13:33:54","slug":"participation-at-the-heart-of-policy-design-and-delivery-the-national-dementia-lived-experience-panel","status":"publish","type":"post","link":"https:\/\/blogs.gov.scot\/participation\/2024\/05\/21\/participation-at-the-heart-of-policy-design-and-delivery-the-national-dementia-lived-experience-panel\/","title":{"rendered":"Participation at the heart of policy design and delivery: the National Dementia Lived Experience Panel"},"content":{"rendered":"

\u201cI am Indian; I am Scottish. I am a husband, a brother, a father, a grandfather. Some relations seem so distant now. <\/em><\/p>\n

Another life? I recall the streets of my youth; I do not know my address. But I am still me<\/em>.\u201d<\/p>\n

From a poem written by a member of our National Dementia Lived Experience Panel in tribute to his father, these words feature in \u2018Everyone’s Story\u2019, Scotland\u2019s New Dementia Strategy<\/a>. Launched in May last year, the strategy sets out a positive, shared vision for dementia in Scotland over the next 10 years.<\/p>\n

Dementia is a disease which up to 90,000 people live with in Scotland right now, and up to 1 in 3 people born today may develop. It is also a disease that people can live with for a number of years and, with the right supports, enjoy a positive quality of life.<\/p>\n

\u2018Nothing about us, without us\u2019<\/strong><\/h3>\n

In 2022, we set out to develop a new strategy for dementia to support people living with a diagnosis to live their best life. We knew the best way to deliver better experiences for people was to include them in policy design and delivery. Only someone who is living with dementia knows the complexities and nuances of dealing with it.<\/p>\n

In keeping with the principle \u2018nothing about us, without us\u2019, dementia communities across Scotland have come together for decades to develop innovative community supports, to establish their own spaces for engagement and artistic endeavour, and to campaign for change. Our approach built upon this already well established work.<\/p>\n

A collaborative approach<\/strong><\/h3>\n

It was incredibly important that peoples\u2019 voices guided policy change. To do this we created a panel of people with lived experience to have real power and control in how we consulted, created policy ideas, and looked critically at our own work.<\/p>\n

We wanted to make sure the lived experience panel was open and independent from government. A recruitment group was created, who independently identified via an application process 22 panel members, made up equally of people living with dementia and care partners.<\/p>\n

The Panel comes to life<\/strong><\/h3>\n

Before our first Panel meeting in September 2022 we held individual discussions with all members of the Panel to ensure that any support needs and access arrangements could be agreed.<\/p>\n

At our first meeting we covered:<\/p>\n