Public involvement: let’s speak honestly, we may need to lose some baggage to face the future

This week I am doing some talks in Perth, Western Australia.

This evening I spoke at an event hosted by ‘Involving People in Research’ based at the University of Western Australia. They and their leader, Anne McKenzie, have rightly gained an international reputation for their leading work in public involvement which goes back to 1998. Judging by today’s event, their future is even brighter.

On Wednesday and Friday I will be speaking at the International Association for Participation (IAP2) Australasia conference. It’s an even I am very much looking forward to because it brings together citizen advocates and public involvement leaders from many sectors not just health.

The journey here is an arduous one as anybody who has done it will tell you. But it was made all the more so, by a longer than expected layover at Hong Kong. The circumstances of which and the way in which it unfolded, perhaps shining a light on the best and worst of what it’s like to be in public involvement in health research.

Every decision about me without me

My British Airways flight from London was late getting into Hong Kong, making what was already a tight transfer time, even tighter. But it was doable. However, it was not to be. Cathay Pacific had decided while we were in the air that me, and 6 other passengers, were not going to be given the choice of, literally, running for it. No, we were to be booked on other flights and met by an attendant at the gate. I still say we could have got it. But the decision was taken out of our hands.

Losing-it never gets you anywhere fast

There’s always someone who wants to ‘kick-off’ and go it alone in these situations isn’t there? So it was on this occasion: a tall, ruddy-faced American who thought that he would use every inch of his height and every profanity in his small mind to bully the young attendant chaperoning us. He got what he wanted – to be taken off somewhere to get special treatment. To be fair you rarely come across this sort of behaviour in institutions so much anymore. But when you do, if it’s any consolation, the person often arrives late at their destination. I know for a fact that this man arrived in Perth a full 12 hours after me. His own vanity made him blind to the many other good options he could have taken.

It’s always best to stick together

The rest of us, meanwhile, stuck together. Not initially, maybe. But as the drama dragged on (a full six hours in the end before we got on our next flights but with the prospect of arriving 18 hours later than we were scheduled because of the way we were routed) we realised that speaking together, acting together gave us a louder voice and made us harder to ignore. The response times of Cathay Pacific shot up I can tell you! No airline, however awful their customer service, does not want a pack of unhappy passengers at its check-in desk.

No one tells you anything

When I look back, what was funny was that every time our group flexed its muscles the staff would all rush to the phones and call who knows who. At one point, there were five members of airline staff calling someone. Yes, language was a barrier. But the most maddening aspect was that in spite of all this phone-calling no one would bother to pause and tell you anything. Most people can cope with things going wrong. It is when no one tells you anything that it becomes frustrating and distressing.

Airlines are good at hiding behind their tailfin

It’s only when things go wrong that the profit-seeking motives of companies are laid bare, their lack of consideration for the customer emerging from the gap in the ground like sewage from a broken waste pipe. Our choices as passengers were diminished; our delay made worse, our baggage for a while ‘lost,’ all because one company didn’t have this arrangement with another, or used different suppliers. Unfortunately I see the same sort of organisational behaviour here in the UK. Austerity might be driving this. But actually, it’s the perfect reason for us to be striving to work better together rather than standing apart.

Consumers have ways of making others talk

No, I am not talking about shining strong lights in people’s eyes. Although it’s true we do that sometimes. After all, what is lay review if it’s not a bout interrogating research! No, in this instance as in so many in my life, it was the consumer who carried the messages (almost literally) from check-in desk to check-in desk, who got the airlines to talk and finally enabled us to go on our way.

It’s ok to lose some baggage

There was a moment – well, maybe several actually – when it looked more than likely that I would be arriving here without my baggage. A bummer I know. But actually after being initially very annoyed, I soon felt strangely liberated by the prospect. Luggage – or carrying it – is the one thing I don’t like about travelling. I don’t need a full case of clothes to do a good talk. I am not sure I was going to wear most of the ones I had packed anyway. It’s human failing that we always pack more than we need.

When the pioneers set out across America they arrived with very little that they had set out with – the furniture and the pianos and the momentos that had felt important when they left what had been home became less important and then unnecessary to where they were going. In fact, they became potential impediments to their survival. So they got rid of them to take on board food and water instead.

Public involvement is in a state off transition. I sense much anxiety and apprehension about where we are heading. People are clutching onto the things that are dear to them and that they see as essential to life in their new place. That is understandable. But we need to ask whether they are essential to where we need to go.

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