Help us help you, to help us

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Joined: 28/09/2011 - 9:07am
Help us help you, to help us

HELP US, HELP YOU TO HELP US! Please take a look at the above title, and please feel free to copy and paste it to everybody you know. This will be my headline from now on and through all of 2012, this is why. If I have learned anything this year it’s that the only way forward in reducing stigma and changing things for the better regarding the treatment and care for people with Dementia , is to ask them (Or me) what we think would work, or what we think would be the best way to go forward. Am I being blinkered in this? I don’t think so; I challenged the National Council of Palliative care earlier this month because there wasn’t one mention of people WITH Dementia on their INVITE list to the upcoming conference. The result is I have a meeting with them on Nov 7th this year. I have the Dept of Health (NOTE TO DPH, you also have NO people with a diagnosis on your Invite list) also in my sights and on my radar for doing the same thing. Also after months of e mails and talking, earlier this year BUPA decided to include figures of people with a diagnosis of Dementia that were under 65yrs of age, but only after I blogged about how ridiculous it was that the biggest Dementia care provider in the Uk had “Forgotten” all of us who are deemed to be too young to have dementia. I have stood in front of conferences and Staff training and watched as their jaws dropped when I revealed I have a diagnosis of Alzheimer`s. For goodness sake people, it’s not rocket science is it? I am not naive enough to think that everybody with a diagnosis of Dementia will stand up and speak out but I am willing to bet there are a lot more people just like me out there who are more than capable of “telling it as it is” All these people need to know is that the Professional`s, no matter in what capacity will actually sit down and talk to us, but more importantly, LISTEN TO US! I have said this many times this year, but I do believe this is “OUR TIME” people like I and many others I know across the globe can grab this opportunity and “Shape the Future” for generations to come. We showed what we could do last year; together we created a NEW DAY in the Dementia Calendar, Dementia Awareness Day, which was held all over the globe on Sept 17th this year and will be every year from now on. We also produced the “What Works “ resource cards for the whole world to look at and hopefully understand that some of us do have a voice even though we are though not to. So we now have to take this one step farther. We have to start listening to those who want to speak about this awful disease; we have to start asking them WHAT THEY WANT? More importantly we have to set up some kind of website or page that could be called “Voices of Dementia” (just a suggestion) where people with a diagnosis would write what they would like to happen regarding their treatment and care. This could then be passed onto the people it would most benefit for them to look at and hopefully learn from. But we need all the Professionals which include carers, nurses and Drs alike to encourage all those with Dementia who they think would benefit from this, and encourage them to speak up and let everybody know that no longer are we going to be stood in the shadow of this awful disease but we are standing, together, as one, to fight it all the way. It’s not about “Carers” or us, or US and Carers, or even Nurses or Carers, but about all of us pulling together, pooling our resources and helping people with Dementia understand they are not alone but have a voice to change things to come. As anybody who knows me will know I also have another “Idea” on the back burner for when I meet up with the South West Dementia Partnership Group on the 24th of this month in Bridgewater, so please “Watch This Space” in the meantime, please let me know what you think about the above, very best wishes, All our love, Norrms and family

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Esther Stone
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