One of the people I follow on Twitter is @george_rook, who describes himself as ‘living as I choose with dementia’. Yesterday I noticed this tweet from him:
“I was a service user on the Quality and Safety Committee at our NHS Trust till I was removed last year for asking difficult questions. Kept challenging why action was not being taken to improve safety and quality of care. Was told I was not there to challenge!”
Timely, George! I’d just had a difficult question too…
We were sitting round a table in Knaresborough, me, Jane and Julian who run the local Age UK office there, Lena, and Lena’s brother and sister-in-law, Bosse and Marie-Anne, visiting from Sweden.
Jane heads up the Knaresborough Age UK operation, and she’s one of our Care Combine subscribers. A couple of weeks ago she’d invited me up to have a chat if I was ever in her area. Perfect. I could take our visitors on a tour of beautiful North Yorkshire at the same time as meeting someone who seemed seriously interested in our work.
It was Jane, Julian and I who did most of the talking. They’ve been innovating for years, helping the elderly and those with dementia to stay connected and active in the community, and I was lapping up their ideas and experiences.
Then it was my turn to explain my plans for The Bine. Providing a Centre where people living at home with dementia could spend the whole working-day engaged in meaningful, purposeful activities. Freeing family carers from their care responsibilities during the daytime for five days a week so that they could keep their jobs or pursue their own interests. Asking the carers to volunteer for two days a week in return for free membership.
The three of us were on the same wavelength, and ideas were flying across the table. How would we handle training – certification – medical support? It must have been hard trying to follow our brainstorming trail, particularly if your first language wasn’t English. But someone was listening intently.
Julian wondered whether it might be possible to merge my Bine ideas with the existing Knaresborough activities. Could we maybe start with four hours a day, not eight? That wouldn’t mean too much of a jump for them, he suggested.
– That’d be fine if we were only concerned about the people with dementia. But it’s important to remember that The Bine is for the carers too. We want to give them the same freedom that parents have when their children go off to school. They can work or study or follow an interest, getting a break from their care responsibilities. That’ll make them better carers. It’ll mean that their loved ones with dementia will be able to stay living at home for much longer instead of being moved into care. No, it really needs to be a full eight hours, not just a couple of hours snatched here or there.
For the first time in a few minutes the table fell silent, and I could see Julian trying to work out the consequences. And then, with a slight frown on her face, Marie-Anne spoke up.
– It’s too long.
– Too long?
– Yes. Eight hours will be too long for them.
And she looked meaningfully at Lena, who after showing signs of interest in our conversation for the first few minutes, was now in a different world, sliding her undrunk-coffee cup into different positions on the table.
I retraced my narrative, elaborated.
– Yes, it would be too long if they were doing the same thing all the time. But there’ll be variety. And choice. They’ll have the freedom to choose which activity they prefer – including the freedom to do nothing at all if that’s what they want. We’ll need a rest area of course …
But in my mind, it was now me who was calculating. Marie-Anne could be right, probably was. And if she was, what did that do to my elegant argument for the Bine? If we can’t find a way for carers to take the whole day off, then will all my plans begin to unravel?
After the meeting, Marie-Anne asked me whether she had been right to raise her question. After all, she was just a guest at the meeting, an outsider.
My response? Often the best questions come from outsiders. Not from people who just like their voice to be heard. But from those who have really made the effort to listen. If they come with no preconceptions, but just think, weigh up the evidence, and then pose that difficult question, they can help us see things in a whole new light, from a brand new perspective.
Until Marie-Anne’s question, I thought I’d come up with the perfect solution to dementia care, serving the best interests of both those with the illness and their carers. But I’d missed a vital consideration.
The fact is that no solution is ever perfect. We can never find all the right answers. But we can always ask better questions.
The next step
Marie-Anne’s question doesn’t unravel my plans for the Bine. We still need to open the Centres for the full working-day, so that carers who want to can continue to work, allowing more people with dementia to continue living at home.
But our plan needs more flexibility. What about those member/carer partnerships for whom the full eight hours would be inconvenient? And how would we cater for members who’d find eight hours too much, but whose carers need the whole day free?
We will find answers. Or perhaps you will.
Does it mean we should pause the campaign until we have the perfect solution? No, because perfection isn’t possible. If we wait for it, we may never get started.
This won’t be the last challenge or difficult question we face. When they arrive, particularly when they come from our supporters, those who are trying to help us improve our services, I hope we’ll always have the humility to listen properly.
Your job is to hold us to that commitment.
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