When you have to hide doing public involvement you know there is something wrong

Ahead of the ‘INVOLVE at 21’ Conference last month I emailed a few patients and carers who’d worked with me over the years to ask them how much time they spent on public involvement every week.

My idea – which is not original (I cribbed it from Canada) and stupendously naive as you will see – was to do a back of the envelope calculation of people’s contribution to research in monetary terms using Office for National Statistics (ONS) data. We see this being done all the time by a range of movements not least carers organisations: ‘Carers save the UK £….’. And rightly so.

I got a few replies. One friend said ‘I never stop thinking about it even when I’m not doing it.’ If lawyers can charge their clients for thinking time then so should we able to, thought I.

Another put their estimate at a few hours but I know they do an awful lot more than this. Which says something about how we perennial undervalue our contribution.

Someone else put their estimate at around 25 to 30 hours. Largely unrecognised I suspect other than travel expenses. No wonder public involvement is inaccessible to so many in those communities impoverished and marginalised.

But one reply in particular distressed me. In it my colleague said that many would never reveal how much time was spent on public involvement for fear it got in the hands of the Department for Work and Pensions (DWP).

It made me so angry. What sort of society have we created where people feel they can’t be open about their contribution – civic contribution if you want to call it that – to a research sector that makes the country £Billions? Bloody warped that’s what you call it.

Many in our community are caught between a punitive benefits system, a research sector which is lazy if not negligent on the issue of reimbursement, and university and Trust finance administration systems that seem to treat people as if they are aliens. What message does all this give? Actually don’t answer that in case my blog gets closed down for inciting violence.

Following last month’s conference INVOLVE with the Patient Focused Medicine Development organisation are asking people for their public involvement pledges. You have to submit them by 21st December and they are hoping to reach 500 pledges by then.

So my pledge is to do more to highlight this issue with research leaders and to turn the tables on this issue of affordability. As I said at INVOLVE it’s not a case of not being able to afford public involvement, rather that they can’t afford not to. Specifically I’m also going to write to Ministers in the New Year to highlight the need to change both policy and practice.

Have a good day.

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