FAQu - some answers that patient partners can use when they get asked the same old questions

by David Gilbert

August 18, 2017

Better than FUQu

Yesterday, I was at (another) meeting. I had been asked to talk about ‘patient partners’. Well-meaning healthcare professionals listened to what I had to say. And then came the questions. If you are a patient leader, patient partner, or whatever you'd like to call yourself, know what they are, right?

After thirty years of advocating for people who use services to be fully fledged partners in decision making, they are the same questions time after time.

Then I thought. I’ve written about all of these. Maybe it would be useful to do a sort of ‘FAQ’ response. It saves me from doing a sort of ‘FUQu’ response born of weariness… See, I’m learning to be kind :-)

If these are useful, please go ahead and lean on them when next you’re asked…

So, who do you or these patients represent’? This is a blog on the myth of the ‘lay representative’ and why we should banish the word forever.

All patients are individual, and their needs personal’. This is another subtle challenge to the ability of any person with a health condition to be at the macro-policy level. However, if patient partners know broadly what matters, then they can use personal insight coupled with a wider understanding of what matters to all, to catalyse conversations. This may help: https://futurepatientblog.com/2015/05/14/the-patients-dozen-what-matters-to-patients-and-carers/

'What difference do patient partners make'? This is a blog that argues for a different sort of framework to assess the impact of patient partners – it is focused on patient partnerships in improvement work, but could be useful more widely and act as an evaluation framework: https://futurepatientblog.com/2015/03/22/seven-things-that-patients-bring-the-benefits-of-patients-as-partners-for-change/

We are all patients’. This is not a question, but a challenge. This is the most trotted out line by health professionals who, by saying it, are implicitly undermining the need for any patient partners at the table. We are all patients? Well, yes…. And no. https://futurepatientblog.com/2014/11/28/we-are-all-patients-yes-and-no/

What does a Patient Director do?’ This is a more recent question of course. And I am now beginning to be able to address it. Here’s a blog that tries: https://futurepatientblog.com/2017/06/09/happy-birthday-me-musings-of-a-two-year-old-patient-director/

Why do we need to change how we engage with patients?’ The failure of traditional engagement is the underlying rationale for much of what I do and is informed by many years of seeing that the current approach ain’t working.

Why do we need patient partners now? Here are some blogs that discuss why patient partners are needed and why only by creating true patient partnerships can often intractable solutions be found:

This one is about why STPs (sustainable transformation plans) require it:

This one is about the overall culture of fear. And how patients can help 

And finally...

Here’s one for all my fellow patient leaders who are tired of answering questions like these and in acknowledgement of the emotional labour. Thank you:

If you borrow from these ideas, it would be nice if you can acknowledge where they came from. Thank you and good luck.


There are many more blogs at www.futurepatientblog.com - some on patient partnerships, some on mental health and some on poetry.

(c) 2017 David Gilbert



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