Breaking Boundaries, Evidence, Healthcare, Hope, Inequalities, Involve, Involve Conference, Involvement, Lived Experience, Mental Health, MindTech, NHS, NIHR, Parity, Partnership, Patient Leaders, Peer, PPI, Research

Involvement, Fast & Slow.

Involvement, Fast & Slow.
Should I stay or should I go?

by Paul Radin

On returning home from this year’s NIHR Involve Conference in Birmingham, I had the feeling that I’d learnt something important, but couldn’t quite work out what.  Later I realised that my reserves of hope had been topped-up.  I believe in Involvement, and now I know that I’m far from being the only one.

Recently I’ve been part of a series of conversations with a friend about the relative merits and drawbacks of being Involved.  At the end of these discussions we both made decisions.  My friend decided to walk away; I decided to stick at it.  I’ll attempt to explain my decision.

A People Business !

These are not easy times for Involvement in healthcare; the purse strings are tight, and Involvement is an easy target for those who don’t really understand it well. However, the good news far outweighs the bad, in my view, and it all stems from the people Involved.

I’m impressed by the quantity and quality of people all pulling in the same direction. The direction of fairness, of rightness, of excellence, of innovation, of Involvement.

Look at the number of people doing research into Involvement.  Look at the number of people trying to work from a Peer perspective; as Researchers, as Support Workers, as Patient Leaders.  Look at the number of people who have emerged from suffering to become experts, publishing major works and earning PHDs, and look at the number of people who have chosen to help us by directing their own careers into progressing Involvement because they know it’s the right thing to do.

No-one is saying that we are fine as we are, and that no further progress is necessary.  Everyone who attended the Involve Conference wants to move Involvement further on. In that respect it is a movement; a movement for change.

Inequalities !

Of course, the way individuals are experiencing this process of change has great variation.  At one end of the spectrum there are people doing very nicely in well paid, high status jobs with interesting work to do and interesting people to talk to.   Conversely, some of us are just barely clinging on to the hope that maybe the struggle of life will seem worthwhile if we get to use our experiences & insights to make the world a better place for other ‘people like us’.

“Suffering ceases to be suffering at the moment it finds a meaning”
Viktor Frankl

Is it any wonder that some of us feel a greater sense of urgency about the pace of progress?  This can at times tip over into anger, frustration, disillusionment.  Why, we ask, are things not the way they should be?

Is it also any wonder that some of us get into a ‘them & us’ mind-set where our suspicious minds pick up on all those subtle signs that we may be playing in a ‘rigged’ game.

How hard it is, for each to see the others point of view.

The whole system is a compromise, and always will be. It’s a compromise between the people who can see how things should be & could be, and between those people who just don’t get it yet.

There are also people who got it once but lost their way. Involvement staff can forget who they are really supposed to be working for. Involvement may have started as a nice idea from a few creative & pushy service-users, but it has now grown into a mini-industry; a sub-section of the healthcare sector. It has budgets, and HR policies, and risk assessments. It’s not hard to see how the core values can get lost.

Some rare individuals might even be prepared to fake it just to hold onto a cushy little job in the NHS. They will be part of the compromise too, hopefully a diminishing minority, but those people will need our partnership more than anyone.

Ups and Downs !

PPI Reps, Involvement Volunteers & Service Users can give up on Involvement when it doesn’t seem to be delivering enough progress to maintain our reserves of hope.

To all Involvees I say this…. Don’t give up !  Have faith in the human race.  Because Involvement is right; and right will win through in the end.  Don’t lose sight of the fact that people have good intentions at heart.

There will be ups and downs along the way, and we will have to take the rough with the smooth. At this time of writing, we are all awaiting the ‘Breaking Boundaries’ Report, which, I suspect, will reflect the up & down state of Involvement in UK healthcare.

Sometimes expertise is cast aside like it never has mattered.  Sometimes we rightly need to question whether Lived Experience is valued enough. Indeed it may be time for a new Mental Health Parity campaign, this time one that seeks Parity of Value for Lived Experience and Professional Learning.

How many times do we as Service Users have to explain the difference between Involvement, Participation, and Engagement, to people who are paid to do this for a living?

Being part of a wider Involvement network is important. Then, when Involvement takes a hit in one area, it’s easier to accept when you know that somewhere else things are on the up.

Research has to be our greatest hope.  The brightest of NHS employees will instinctively know the rightness of Involvement.  The rest will need convincing with evidence.  So we need to grow the evidence base until it becomes overwhelming, and we need to spread the values of Involvement until they become endemic.

The rightness of our case will win through eventually.  It’s as inevitable as night follows day.