Is it an industry or a movement we are creating?

In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question:  ‘Who is fighting the patient’s corner?’

He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients.  A thick, muddy, layer of ineffectiveness which will be, at best, no worse than the previous one.  Funny how, in the face of it, we have become all dewy-eyed at the distant memory of the much-maligned Community Health Councils (CHCs).

Anyway, it sounds like one of those conferences I was pleased I missed in the end even though I was booked to attend.  Not least because I didn’t then have to listen to Stephen Bubb’s new-found ‘expertise,’ as reported by Dick Vinegar, on who funds the most medical research in the UK.  Quite alarming.

Watching the daily traffic on twitter from this conference or that conference, much of it laden in the latest buzzwords, I sometimes wonder whether we are indeed living in a parallel universe to the public.  In fact I suspect Dick speaks for most of the nation when, with refreshing honesty, he admits his lack of knowledge about some of the ancestors of Healthwatch.  I guess that even those that can, would then have difficulty describing what they do or what they have done.  The portents are not good for the latest round either.

On the other hand it is easy to overlook the impact that patient advocacy has had in recent decades and rather opportunely I noticed that PatientView have brought out an interesting report looking at the influence of patient groups in the UK and around the world.  Discuss!

But I do fear that we are at times in danger of creating an industry that reflects the interests of its managers and owners, rather than the social movement – a group of people with a common ideology who try together to achieve certain general goals – that I hear many people aspire too.  Form and function have taken precedence over aim and purpose.  What is missing it seems to me is a complete lack of thought about how, looking beyond the new structures, we ‘get out there’ and mobilise public interest and participation.  Hence many good colleagues will find their way to the table to find that their feelings of isolation are not much different to the ones they had in the old world. They will plough a lonely furrow and the yields will be poorer for it.

Last week I had the good fortune to share some time with two colleagues who have both been around a bit and know their stuff on public involvement.  I was expressing my worries about how obsessed people are currently about structures, definitions and processes.  We work long and hard to create these things and then wonder why the public pass it by.  I asked whether this had always been the case – particularly with regard to public involvement in research – and whether people had been paralysed with an overriding need to cross all the t’s and dot all the i’s .  The answer was refeshing:  ‘No, we just got in there.’  Anywhere, in fact.  The philosophy being to seize on any opportunity that could help make change happen.  And it did.

‘Get out there, get in there’ sounds like a perfectly reasonable call to action to me.



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