Wednesday 9 June 2010

Charities and groups

Do you have much to do with charities and groups?

Odds are you do. Is seems there's been thought about hospitals and charities on blogs for a few years now with some 1530 hospital Trusts having charities. Whether charities should be paying for MRI scanners and the like is a valid question, with different views having been aired.

As well as hospital charities, there're other charitable groups. In my corner that boils down to the Alzheimer's Society, MIND and Age Concern. They tend to contribute an incredibly useful and independent role in offering supporting information, shared perspective and emotional support from peers, which NHS services can't (and shouldn't) compete with.

Local hospital charities. National special interest charities. What of patient groups? I'm enthusiastic about most of them; one of the best conferences I've ever been to was an annual Hearing Voices Network international conference. The patient perspective was so clearly and powerfully and helpfully presented I didn't even blinch at the emphatic liberal use of "survivor" instead if "patient" since it was so congruent with the account. Perspectives shared in presentations and workshops and over pints on an evening changed my views on mental health care more than any training or placements or CPD ever did. I even gleaned more on the consideration and use of therapeutic interventions there than I did in any other conference. I'm uncomfortable with minority patient groups misrepresenting majority patient groups e.g. patient focus groups who insist on being called 'clients' or 'service users' have ingrained this into national dialogue, because a vocal few have demanded this. Yet local consultation with 4 patient groups and 2 carer forums and Alzheimer's Society groups in 3 areas found the prefered term was 'patient' from all parties, which fits with a paper published in the psychiatric bulletin that proactively asked people what they wanted to be called and got 'patient' back too. So a small very vocal minority group have changed things in a way that's at variance with local and national evidence.

That's undue and unfair and unhelpful influence.

But apart from this tiny, tiny issue of vociferous minority groups misrepresenting majority views, I'm all for patient groups and advocacy for change for the better. So if there's independent thinking, helpfully generating constructive challenge or interjecting alternative viewpoints, why am I uneasy about the Kings Fund?

Although founded in 1897 as an independent charity essentially to look at better hospital care in London, it's now a behemoth that asserts that they ensure, ". . . independence and expertise remain at the heart of we do."

What is the heart of what they do, you may ask. They tell us. It's about how they, ". . . play a special role in shaping policy, developing effective practice, and supporting individuals and organisations."


Policy with implemented effective practice, independently generated by experts, what's not to like? I met with and spoke with folk from the Kings Fund, their passion and motivation was self evident. Their message and the change they're effecting was crystal clear. Inspired independent change being joyfully and enthusiastically progressed, what's not to like?

Well, it's just that more than a small part of me feels intense disquiet that it's not really that independent. In fact, isn't it all well represented either directly by Department of Health workforce (directly or indirectly through Select Committee or quango appointment), or private health company presidents, or Monitor, or other interest groups. So not independent at all. Indeed, they're placed to advance either government policy or the interests of private healthcare companies, yet overtly state they're independent. Grrrr.

I note that cleverer folk spotted this before me in December last year.

Much badness.


Eileen said...

I suppose that it might be reasonable to use the term client in the USA as - generally - they are, they're paying. However, personally, if I am being seen by a doctor because I have an ailment of some sort - please call me a patient. Because that is the meaning of that word. Once I have been cured of that ailment I become a former patient. If I have a chronic condition, then I remain a patient for that condition. I try never to use the word "suffer" except when I am "suffering" from a condition or an ailment: in my case I have polymyalgia rheumatica, as long as I take the pills I don't suffer. I am a patient because I require follow-up prescriptions.
The PC lot have gone daft because they just don't appear to understand how language works. It should be a means of expressing facts in an unambiguous way - and when it is not used like that you end up with all sorts of misunderstandings, which might have unexpected and unpleasant outcomes. Especially in medicine, it must be pointed out. Rant over (for now).

The Shrink said...

I'm with you that usually the whole PC things seems daft irks me too, as far too intrusive and extreme and unhelpful.

I'm not a politician.

I'm often not correct.

Therefore, I've stopped ever aspiring to be policially correct . . .