Are we really in this together?

We live in strange times.

Lately I have been watching ‘Deutschland83,’ a wonderful German language spy story set in Berlin.

As an 80s child it evokes many memories for me. The music. The fashion. The fear and paranoia of those times when complete annihilation was just the press of a button away.

The dogmas of Reaganism and the little red book have been replaced today by that of ‘austerity.’ Whoever can shout the loudest about what they have done in the name of austerity holds the conch and has the power. Those who speak against it risk personal annihilation.

It is triggering some weird behaviours. And the world of research is no exception.

The local group whose project is killed off by high-minded local health officials who think they know more about the disease than those experiencing it. Government officials who have suddenly become experts in ‘the Daily Mail test’ trying to police every £. Local and regional patient groups on the verge of folding because no one supposedly has the money to fund them.

All I ask for is equity. For fairness in how these decisions are reached. Transparency at the very least. But my sense is that we in public involvement are easy pickings.

This week I visited a research facility that was being refurbished. It is and will be beautiful. I went to the loo and I have to say it’s nicer than my one at home. In fact I suspect the whole refit cost more than it would to paint my house. Certainly more than it would take to run a local public involvement group for the rest of the year if not longer.

On a visit to another facility I listened intently and politely to one of its senior managers tell me how short of money they were and how careful they had to be. Too right, I thought. Does that extend to the funky settees in reception? They’re nice than those in my lounge. As I say, you can always spot a university these days by the number of cranes hovering over them.

I don’t begrudge people nice offices. Of course I don’t. Nor do I want anything other than the best deal possible from Government in terms of the money research gets to spend.
We need world class facilities, of course we do. But it doesn’t quite sit right with me.

The most dispiriting aspect of this is it is not as if the public involvement groups struggling to survive are anti-science. They are patients, citizens, taxpayers who have come together to help make it happen, to support it, to champion it. What a snub this feels then. We will have real problems if they begin to walk away – just look at the panic that is seizing our charity sector right now.

So, I have one question for my colleagues across research today, on behalf of all patients, carers and the public who have been helping us make a difference this week. And will do the same next.

We think we are in this together. Do you?

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