Be a game changer

It’s over for another year.

Thanks to the organisers and sponsors, who make sure so many of us can attend, and the organisations like the DEEP Network and Dementia UK who pay for our travel and hotels.

Thanks to the weather gods for tipping me the wink to leave early and avoid floods and cancelled trains.

Thanks to the wonderful helpers and facilitators who are just there when you need them, with a smile, support and kind words.

This year I felt incredible energy and enthusiasm, and passion, to make change happen.

I loved hugging my wonderful friends, and making new ones.

And I come away with renewed determination…

To kick down doors.

To disrupt cosy meetings.

And to make those who should know better do better.

I have always known that much of what we say and hear at Congress is preaching to the converted. But lots of people this year said that after sessions they felt renewed and invigorated to continue our struggle and our campaigns.

So Congress definitely works.

And it was the smaller sessions that were powerful, and which could have been on the main stage. But then the audience would have been distant and discussion limited.

Perhaps fewer, bigger, side sessions? Perhaps repeated, to allow everyone to attend in turn?

The venue was light and convenient, apart from the lift confusion! But I did find the big hall too dark and the sound system difficult to hear clearly. Or was it just the (poor) style of delivery?

Much better than that awful hotel in Brighton, with stairs you fall down, uneven floors, and dark lighting.

What did I learn?

That there is no public record or celebration of hospitals that are or may be doing good things for their patients with dementia. Apparently to list any would be to accredit them and risk discredit if CQC then criticised the hospital. Oh God!

There is a growing number of people who love with dementia who are able and willing to speak up in public and to campaign for change. It is wonderful to witness this growing social movement.

The next great step is to find decision and policy makers, local and national, and break down the barriers they erect around themselves. Like the environment protestors, we must sit down in the roads, glue ourselves to committee doors, interrupt meetings, shout it out…we will not stand for this any longer.

Make them uncomfortable. Make them squirm. Hit them where it hurts…in their heart. Make them feel guilty.

They accepted their jobs and they take their salaries. It is not acceptable for them to say it’s not their fault. There is no money.

Make a stand for what you believe is right.

So let’s get out there, wherever we live, and make our voices heard.

We each have a legal and human right to equity of care and support to live our lives as we choose, as well as we can. Our rights are not optional. They are inalienable.

We can (and do) do a lot ourselves, and we do it well. But everyone of us needs support now and then, and more so as our terminal disease develops.

And those friends, neighbours and family who help us need support too. Or they break.

DEEP groups empower people affected by dementia to speak up, to tell ‘professionals’ about the reality, and about what they need. With 140+ groups now there is huge social power to demand change, especially at local levels.

Take no notice of those who claim that dementia means you cannot do this.

Ignore the professionals who think people with dementia who speak up are wrongly diagnosed.

Stand up and prove that you still have your strength and your life experience and your skills. Brain disease rarely takes everything away, and not for many years.

Keep on going now. Do what matters, and what makes you feel good.

Be a game changer.

6 thoughts on “Be a game changer

    • Absolutely. And I do include you/us all. Most of my work is local. It’s easy to stand up and talk at a conference, but hard to get local commissioners to listen and act.

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  1. Pingback: In the Blogs – November 2019 – When The Fog Lifts

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