WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

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Fatso Gets Militant!

Monday, 15 October 2007

Does you Forum Lose its Favour...(as sung by Lonnie Donegan)

As a 'self-appointed individual' (or in language the NHS understands better - a SAI!) I believe in telling things as they are and not obscuring and faking by spin and deception. That's one of the reasons I squirmed when I read a letter about the eventual demise of PPI Forums in the Guardian today signed by Sharon Grant et al.

Now I know many PPI Forums which have done excellent work, and I strongly support the idea that LINks should retain PPI Forums and build on their many positive achievements, but it is just plain silly to try to bury the fact that some have been abysmal - we should acknowledge the latter, learn from them and move on. On the PCX forum, a Camden PPI Forum member has written to endorse my long-held opinion that too many Forums are host to people who are there for reasons of social status; a 'look what I'm doing - aren't I good' pose, a seeking for society power; or even a commercial edge. In my early 2004 article PPI = Patient and Public Impediment I said:
they have installed many of the usual self-styled great and good citizen professional volunteers who do this kind of work out of self glorification and self advancement; appointees with entrenched bureaucratic and paternalistic attitudes. Their kinds of values are death to service user and carer involvement

As well as this I have a long held hobby horse about the central importance of the PPI Forum's total independence from the trust it monitors. I'm nervous when I see a Forum, like one of them around here, which proudly states
Working in partnership with XXX NHS Trust!

So I would say to Sharon Grant: There have been too many failures, and there continues to be failures - serious ones. We must, as 'Nolan' says, be open - and LEARN.

I wrote this mail last week to the National Association of PPI Forums on line discussion group:

A question I also have to ask is where on earth was the Maidstone and Tunbridge Wells NHS Trust PPI Forum? I listened to the reports all day Thursday and was amazed that there was no mention of PPI. There are a lot of posts on the Five Live Breakfast Show message board from Forum members pointing out that the advent of LINks could make things worse. But why haven't the reporters picked up on this?

Does M&TW PPI Forum exist? Well yes it does, and in March 2007 it produced a rather anodyne report on the state of hygeine at the hospitals. It can be found on the M&TW Forum section of KMS (Knowledge Management System). Part of the report does say:

"The Maidstone and Tunbridge Wells NHS Trust often receives a bad press. Some of this is justified and in some cases lapses cannot be defended. Certainly improvements are needed, particularly, in the areas of accountability, communication and performance management. However, much criticism of the Trust is misdirected and fails to look at underlying causes.

The Trust, like many others throughout the country is labouring under financial pressures, which are often not of its own making. These pressures arise from Government resourcing and accounting policies and, locally, from difficulties in managing demand for services and in funding required levels of activity, which are areas where the role and approach of the Primary Care Trust should be examined more closely."

But given the revelations of the Healthcare Commission report surely the Forum should have been pursuing these issues vigorously. And, I don't know - perhaps its my particularly cynical frame of mind, but is there a hint of collusion here?

If we don't alter some of our thinking, we'll end up with LOCAL INVOLVEMENT NITWORKS!!!

1 comment:

Anonymous said...

Hi Mike

Well you know what my experience of being on a PPIF was like.

Most of the members were, I quote, 'nice people' but there was a real lack of impetus. The main focus seemed to be on getting paperwork right. Something which is very low on my list of essentials.

The Trust were very good at baffling with bureaucratic bullshit and I would watch as members' eyes glazed over whilst being referred to sub-section 27 of Section 33, page 1,468!!!

The end result of all the dross was that the chair moved on (due to lack of support..I did me best but 2 people don't make much of an oppostion). the vice chair got a full time job and stepped down and the remaining members carried on sitting their with glazed eyes.

I really did try my best but after raising issues in regards to 2 deaths within 2 months under the same local MH team and getting fobbed off with confidentiality crap and then being told that one of them "was ill and likely to have committed suicide anyway" (that was from a Trust Director)...I thought this ain't the place for anyone who cares about the mentally ill.

Also I was disgusted that someone from the DWP sat as a PPI member. Talk about clash of interests.

From what I have read..and I confess to have given up half way under the sheer weight of more paperwork..LINKS are going to be no better, in fact I fear worse.

With each change comes less accountability and less inclusion.

Until people with mental illness can contribute without being mainstreamed as in having to act and perform like bureaucrats..and there needs to be alot more thought going into how people with mental illness are supported, in their best interests, to contribute...then I see any such forums as a blockage to real inclusion.

Till there is a real shift towards listening to what people (as in the people seeking care) need from these forums...my advise to people with mental illness is to avoid them like a 'Let's all drink more water and become the rehydrated recovered' advertisement.

Not so much disillusioned as fully aware and having none of it!!

Mandy (Lifeboat at the ready)


The Tough Tenor (when I could walk)!

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