Labs of shame – the organisations wanting patients on the cheap

It makes my blood boil. It really does. And at the moment my blood is forever boiling.

The object of my anger – the growing number of organisations who herald their patient credentials but refuse to pay to help make it happen.

More specifically those who won’t pay people’s travel expenses, reimburse them for their time or even help them with booking their travel or accommodation.

The upshot is that the faces these organisations will see around the table with them will be the arguably ‘safe’ and institutionalised patient voice. They certainly have a story to tell but not the whole story. Or they will be people like me, white, make middle class and able to make the choice to pay or not.

I’ll save these organisations their blushes today and won’t name them . But I am thinking of starting a ‘name and shame’ sidebar to my blog.

Its things like the trade association that won’t pay a rail fare for someone that is less than a decent evening meal. The other association who say they really don’t have the time and money to process expense claims for patients.( i know, it must be hard when its one person attending two meetings a year). The colleague who can’t find anyone to cover his expenses to attend a cancer conference. The new organisation that point blank refuses to shift from a no-pay policy made by someone higher up. Much higher up!!

I accept that occasionally it can be due to over-zealousness by employees in interpreting a policy. Some time ago I was tangentially involved in sorting out an issue where an organisation had said they wouldn’t send people hard copies of documents anymore. Have they ever tried to print off a bid document for a programme grant? Anyway we got it sorted and it was due to someone passing down a diktat without thinking.

But I think what upsets me most is those occasions where staff – and quite senior staff at that – don’t just say ‘this is wrong and we will ignore it, we will reimburse people because it is the right thing to do.’ But, no, austerity has brought out the worse in these places, decisions are now about what can or can not be afforded, not about what the right thing to do is?

When I worked for Procter & Gamble it’s then CEO, John Pepper, introduced a series of principles called the ‘Boa Principles’ I think. Business intelligence is a big thing with many unscrupulous practices. The Boa Principles are in essence a statement that P&G employees wouldn’t play this game. So, if you came across sensitive Information on your travels you didn’t use it and/or you made clear who you were.

That’s the sort of principle we should be fighting for in these places. Pay up or don’t take the patient’s name in vein

2 thoughts on “Labs of shame – the organisations wanting patients on the cheap

  1. Times are hard in the Royal Borough…

    The Royal Borough of Kensington and Chelsea has a duty to involve people like myself – mental health service users, in various Committees, in consultations etc.. Unlike the NHS mental health Trust it elects not to pay us a penny on the grounds that it gives funding to the service user organisations – in this case the charity Mind.
    And this, of course, is the wealthiest Borough in the country.

    Every time I print out documents, send an email, use my computer – I do so at my own expense.

    And now that I think about it, the same is true for my position with position on the Sub Committee of the West London Clinical Commissioning Group. And then of course, there is the total lack of expenses whenever I turned out for Kensington and Chelsea Link. I am assuming Healthwatch will be the same….

    It really does not sit right at all with me that I sit round a table with no tangible indication that my time is valued.

    For me, I am well beyond caring about material things which is just as well really. I fell through gaps in the services and ended up homeless and under the radar from any help whatsoever. I want to try to do my small bit to prevent it from happening to anyone else. Ironically I dossed in the car park of Kensington Town Hall on one occasion – so it is clearly my spiritual home.

    So in this one case, there actually is someone who is “involved” in this rarified “public engagement” world from the so-called “hard to reach”. There should and could be more if the issue of reward and recognition, the “reciprocity” enshrined in Co production – were addressed. One wonders if there is the will to do so…..


  2. What will it take to change this? Do people need to say – ‘ Won’t pay, won’t be involved’ – to get the decision makers to reflect on what effect this kind of policy has? A kind of ‘PPI Strike’? I know people won’t want to do that, because their whole motivation for being involved tends to be very self-less and altruistic. Often they may choose not to claim expenses, or could still manage to do the work without doing so. The reality of who is excluded by such policies is, in my opinion, a real disgrace. But if even those who can afford to be out of pocket as a result of their involvement dug their heels in and said – ‘No – you want my expertise – you do the right thing’ – would it provoke a shift in the policy position which has become a bit of a default setting in some places in recent years? I wonder.


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