Congress

No, not the biblical type! Durr.

UK Dementia Congress.

I’m going to a meeting next week about planning this year’s event, along with Innovations’ Rachel.

Now, I have been to all the Congresses in recent years, and have learned a few things. And I have listened to my friends about their feelings.

Firstly venue. Floods aside, most of us thought Doncaster race course is pretty good. Although the main hall for the big sessions I found awful. If you weren’t close to the front you might as well have been in a different country; I felt totally disengaged, sitting towards the back.

Brighton was awful. Nothing about the hotel/conference centre was dementia friendly. Decor, carpets, stairs, uneven floors, low light levels…horrid.

I remember the event in Telford. Many plus points, but the division of the huge arena into curtained sections did not work.

There is something very beneficial about having views out into the countryside available from several places, like at Doncaster. It lightens the spirit, calms the mind, and just enables you to refocus.

Next, content.

Whom is Congress aimed at?

Is it for promoting and publicising research? Is it for professionals working in health and care? Is it for academics? Is it for people living with or affected by dementia?

Is it to disseminate good experiences, what we have learned helps us live with the disease?

Is it to allow professionals to hear from carers and people living with dementia?

Should it be led and facilitated by professionals or mere ordinary mortals?

Should it be facilitated by professional facilitators with no prejudicial axes to grind?

If we don’t answer those questions we cannot decide on content.

I suggest that Congress should be about results from research, not, as happened last year in one case, 15 minutes about process before completion. Totally pointless.

I suggest it should not provide a platform for professionals to paper over cracks and hide from reality. As happened last year in one parallel event I went to.

I suggest it should not be a forum for the usual leaders to repeat again what we hear year after year, with nothing changing for the better. As happens every time.

I suggest that Congress should be a forum for the good things that are happening.

Where people living with dementia are taking the lead to provide training for professionals.

Where people living with dementia are carrying out their own research.

Where unpaid carers can talk about good practice which helps them.

Where paid carers can learn from us, and can share their own experiences.

Where learning about all stages of dementia is shared.

Where specific topics can be explored.

And where campaigning and influencing can be engendered, supported, promoted and organised.

Because, we all know, we really are not getting anywhere at the moment.

I do not want to listen advertorial puff about services which we do not trust. I want to sit with providers and talk through realities.

I want to sit down with politicians and plan how we can work together for change. We need to get them there. I don’t want to shout…just persuade and plan.

I want senior NHSE leaders to come and meet us. Senior local government officers.

Bloody hell. We just need to actually get face to face and talk and plan and change, instead of dancing around and hearing the same old, same old, lies.

Congress should be for learning what’s new, for networking and reinvigorating, for focusing, planning, and campaigning.

Otherwise, what’s the point?

Oh, and that first night debate? What about these?

‘That the government should legislate to hypothecate minimum sums of funding to be spent by the NHS and Local Councils supporting those affected by dementia.’

Or

‘That the government should introduce enforceable targets for people living with dementia to have named, trained, skilled Dementia Navigators supporting the, from diagnosis.’

Or

‘That, having reached 67%, the government should set a target of 100% for diagnosis of dementia by 2025.’

Or

‘That memory services should be renamed dementia services, and should sit within community services not mental health.’

5 thoughts on “Congress

  1. I would love to see a debate around the position of Dementia Services. Dementia is a primary care issue and needs to sit within Community Services.

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  2. Should absolutely be about people with dementia and care partners setting the agenda for conferences. Should also be ways to enable more people with dementia to attend conferences as they are beyond the cost of most of us. Having said this, much appreciation for all the work that our representatives do xx

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