Are you a weekend or 24/7 patient group?

So there we would be, my ‘punk’ friends and I, lapping up the attention of tourists in Trafalgar Square, and hopefully but all too rarely their loose change as well. Come Monday of course, we would return to the uniformed anonymity of school. Our rebellious ways no more than a felt tip scribble on our bags.

This memory came to mind last week as I pondered the future of patient groups and the charity sector. At a time when many institutions if not whole sectors are succumbing to a ‘market correction’ in their true value – from banking to the media and parliament, how long before the same befalls charities I wondered?

Do we have sector wide leadership with the sort of integrity to steer us away from a potential fall? Or a regulator fit for purpose for that matter? I sometimes wonder whether our Charity Commission is no more than a school caretaker good at locking doors and mopping spills but lacking the consumer instincts we expect of regulators in other areas of life such as our utilities. Given the competition and economic disparities within the sector does it now warrant an economic regulator?

Back to patient groups in particular. For these must be difficult days. Aside from the pressures of keeping afloat in a recession, the range of relationships they manage is more complex than ever. And yet it is at times like this when all before them seems to necessitate a careful calculation, a balancing of interests, that organisations can find themselves drifting away from their public for that very same reason. So it felt to me when I read one charity’s vision statement a few days ago only to realise it used the word patient, people or even population not once.

This is not the moment for calculating minds and spin doctors that lose sight of what is in the tin. In fact those organisations that do are mis-reading what is afoot and in danger of missing their cue to put patients at the forefront of what we do. Rather it is time to get in touch with the grassroots. And in medical research in particular whether we are talking access to clinical trial data, NHS research or the genome mapping initiative, the reflections of patients have huge importance.

While some of the invocation of the patient agenda that utters from our radios in the morning is deserving of our cynicism. Much of it is not. I sense a genuine desire in Government to not just push patient interests to the forefront of what is happening but to place it at the heart of what we do. Or perhaps i am just naive. That is for you to decide.

What is perhaps frustrating is to not have the patient voice being asserted as strongly in research as one would and should expect from our charities and patient groups. Not what they think we should hear, but the whole picture and at the very least one that is not filtered by other interests. It is only with that all-round view can good solutions be formulated and a viable path be plotted. I have heard it clearest not at the big conferences but in town halls and community centres.

Tomorrow we will hear from the NHS Commissioning Board about its plans ahead and Tim Kelsey – the Board’s Head of Patient Insight and Information – has promised that it will be citizen focused. We have already been treated to a Sunday of news headlines dominated by the proposal for an inquiry into making more NHS services available at weekends.

So maybe this is the moment for organisations to decide whether they are weekend or 24/7 patient groups?

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