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.

Protest, Norwich Job Centre

Protest, Norwich Job Centre
Fatso Gets Militant!

Monday, 29 October 2007


I tried to respond to a Patient Citizen Exchange blog by Laura Greene today. I said:

Hello Laura.

Welcome - and my admiration? for you "single-handedly representing the entire health voluntary sector and 1000+ PCX membership..." My first question has to be: what is the composition of the Strategic Advisory Board? And my second question: what proportion of service users to professionals is there on that Board?

There are indeed millions of impatient citizens out there. They are called Service Users (primarily because 'Patient" carries the labels 'One that has things done to her/him'; 'One that is subservient to the "We know what is best for you" approach'; 'One that is at the wrong end of an imbalance of power.' etc). The Americans prefer the term 'consumers', but whatever, we should avoid the term with the negative connotations.

I was listening to the 5 Live debate this morning on the Strictly Come Dancing row about whether or not Gabby should have been given the heave ho. The argument basically was should the general viewers have prevailed over the judges (the dancing experts) by voting ignorantly on personality and popularity rather than on dancing skill. The professionals vs the citizens?

Well if we take this apart as it applies to us, we have to conclude that service users are experts in their own right - as expert as the professionals in our own way. We know accurately what the minutiae of our own lives are; how having to do everything with one hand and clumsily off balance makes us despair, get angry with ourselves and others and cause relationships fractures; how the side effects of the medication causes minute by minute discomfort and pain; how alcohol is the only accessible escape sometimes; how the glass wall effect of schizophrenia type disorder makes it impossible to get involved; how setting meetings for service user involvement miles away makes it impossible for service users with say, agoraphobic tendencies, to get involved; how setting up services miles away makes it impossible for service users to get a service; how some clinicians' arrogant attitudes makes a service inaccessible; how the professionals' consistent expectation that the service user should go to them rather than the professional to the service user makes services inaccessible; how benefits systems set up barriers to service user involvement; how basing everything on the London experience discriminates against service users living elsewhere, especially in rural areas; etc; etc; etc....

So where does this leave us? With every respect for you, your single handed task is impossible - a travesty, a poisoned chalice.

But I'm sure you'll chip away at it so how? There are many service user organisations, run by service users, around the UK. One of the best of these is Shaping our Lives. The Shaping our Lives Network also has many other user groups on it. Additionally, MIND is promoting the mental health network of user groups initiated by Rethink. Set up your own reciprocal connections with people like this and be prepared to act as their frank and open conduit, rather than succumb to propaganda.

And most of all, listen to what people like Mandy, who has responses on my blog, have to say and take it seriously. They have the wisdom.

Good luck and Heddwch.


My response was refused with the message that it was "inappropriate." Can anyone tell me why (it is a government sponsored site)? I have mailed PCX to ask and I'll post their reply here.


Paul Emmerson said...

Thanks Mike.

As I emailed you yesterday afternoon, your comments weren't censored, they were too long for the blog comments box. Your comments have been added in full.

Best wishes


mandy lifeboats appeal said...

Hi Mike

That is what infuriates me...and made me realise that these forums are not representative.

You have one person speaking out on behalf of people they have never been in contact with.

What gives anyone the right to do that?

I believe that when people consult and put the views of those they have consulted with forward (and not in a diluted manner) then it is fair enough to say there is a level of representation happening.

However, assumption is nothing more than that. To think what other people might want does not equate to representation.

Interesting though that when I was in a, supposedly, independant user forum..and I did a consultation and put forward the views of people (Approximately 100)...they were completely ignored by the Strategic Health Authority and mostly by the Primary Care Trust and MH Trust too.

That speaks volumes on whose voices the powers want to be hearing and that is why "Yes people" or even "Maybe People" (with good intentions but little insight)get to do well in the SU movement (in regards to being liked by the powers that be).

God help us...or close faximile will do. lols

mandy lifeboats appeal said...

Glad to see your comments (in full) have been given due space on the PCX site.

Sadly, there are not enough people on the receiving end..and certainly not mental health care... there.

I wonder why? Maybe the PCX could do a consultation on that. Ha! Ha!


The Tough Tenor (when I could walk)!

In a Mellotone

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