Effective service user involvement

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davidc-k

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#21
When i was a young loony, a lot of these paid users used to say they were members of Survivors Speak Out as grounds for giving them the loony voice, Survivors Speak Out was called the umbrella organisation for the user movement.

Survivors speak out was funded by an anonymous grant, it later turned out to be the kings fund, i heard on tv that major contributors to the kings fund were also major contributors to the tory party, the tory party had introduced care in the community and survivors speak out was going on about how awful hospitals were in effect supporting tory policy

Towards the end loonies on benefit started raising the issue of benefits and care, the paid loonies were been paid to attack hospitals and support care in the community so they didn't like that, so to be a voting member cost a fortune whilst ordinary members didn't have a vote but gave validity to the organisation, the paid members could put the money to be a voting member as expenses

This is not entirely accurate. Survivors Speak Out was funded by both the Kings Fund and the Mental Health Foundation. The grants were not anonymous, they were fully declared in accordance with charity and company law.

The Kings Fund (full name King Edward's Hospital Fund for London) was set up by an by King Edward 7th at the start of the twentieth century, the following link offers more details for those interested.

http://www.kingsfund.org.uk/about_us/history.html

It is somewhat misleading to suggest it is in any way linked to the Tory party or its donors. The current chief executive is a former BBC journalist and his predecessor is now a Liberal Democrat peer...

Survivors Speak Out had no paid members (all members PAID a fee). It did employ a number of staff throughout its life, but their role was administrative, not policy. All policies were decided by membership votes and therefore represented the vies of the membership not any individuals.

Happy to engage in debates but factual inaccuracies such as these are unlikely to be helpful

regards

David
 
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ramboghettouk

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#22
It was on tv they showed a list of donors to the kings fund then a list of doners to the tory party and a lot were in common, it was about another activity of the kings fund, that is fact as is the fact that the grant was anonymous to survivors speak out at first, later it was declared

Are you the same D**** ****** **** or however you spell it, who has been making a fortune out of user politics and i've heard of, i have to say unlike the business of survivors speak out, i don't know the facts
 
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Dollit

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#23
Rambog - I don't think you should be asking other members to declare their identity on the public forum. Everyone is entitled to their privacy and anonymity here. If you want to talk about identity then please us the private messages. Thank you.
 
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ramboghettouk

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#24
Apologies, i'm not very internet wise, i don't really know if it's the same person, it was just we were talking about survivors speak out and it would be relevant as the guy mentioned used to run it
 
Rorschach

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#25
Apologies, i'm not very internet wise, i don't really know if it's the same person, it was just we were talking about survivors speak out and it would be relevant as the guy mentioned used to run it
As the forum is effectively a printed medium it requires that it obey the same legal requirements as printed matter. In light of this, and as it was claimed that your proposition was libelous, the name has been obscured.

However, unlike printed media, a forum is computer mediated communication, where the person is avaliable to defend anything he sees as untrue, unlike printed matter.

In this regard it would be appreciated if you can observe people's anonymity in future, and as Dollit said perhaps make use of the PM system. As to false accusation and/or incorrect details, they are best placed to address those details in person.
 
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ramboghettouk

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#26
Sorry i don't like censorship, though admit sometimes it can be required, but i have a certain respect for certain people and we've had a no of interesting conversations
 
Rorschach

Rorschach

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#27
Sorry i don't like censorship, though admit sometimes it can be required, but i have a certain respect for certain people and we've had a no of interesting conversations
The post has been restored. We're not about censorship. Your original statement included the 'disclaimer'

Are you the same D**** ****** **** or however you spell it, who has been making a fortune out of user politics and i've heard of, i have to say unlike the business of survivors speak out, i don't know the facts
Which renders your statement an opinion as a result of hearsay, i.e. you are not stating it as fact. A requirement of libel is that you state it as fact. You have clearly not done this, in fact I presume you were half hoping you could have the facts concerning the hearsay made plain to you.

Still perhaps better off pursued in private?
 
mischief

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#28
David C-K as asked some important questions in this thread. I thought it worth repeating them to remind us what they were:

Like many people here, I suspect, I have been actively involved for quite some time. In this thread, I'd like to get people's thoughts on what marks out "effective" user involvement.

How do we know it's making a difference?
How can we persuade people to pay for it?
How can we remind people it takes time to do it properly?
How could you tell if a service was good at it?
It would be interesting to research the difference in clinical outcomes for services with and with out effective user involvement. My expectation would be that there would be a economic case through more positive clinical outcomes for effective involvement. Do you know if any research has been done along these lines?

These questions are quite challenging! It would be interesting to hear people's thoughts on them. David is in an influential job and could use the ideas we provide to make a real difference in the field. I hope it is an opportunity that we as a forum take up!
 
Rorschach

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#29
To be honest I have nothing but negatives from my experience as a service user over the last 15 years (apart from a few sympathetic/empathetic nurses and some charities). I get quite positive feedback as a survivor who's done the academic thing, i.e. valuable experience to augment my academic pursuits, but that's more as a result of my studies. Don't mean to be negative but to be honest I've found the clinical environment a hinderance to recovery rather than an aid. How many qualifications does it require to prescribe drugs, not many. Overpaid, self opinionated, overqualified idiots if I'm honest. I'd give a Gramscian analysis, but I'm sure you don't want to be bored....

(edited to add, to be honest it was boredom of the system that was the best aid to recovery, i.e. I don't want to have to be anywhere near these tw**s ever again)
 
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Rorschach

Rorschach

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#31
:LOL: Have you been involved with any service user involvement initiatives? I certainly can hear where you're coming from generally about the clinical environment.
To be honest mate...

clinical lip service + my temper = bad combination.

...call me cynical, and in answer to your direct question, no.
 
yodel

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#32
How do we know it's making a difference? We know it's making a difference when services are putting in place what service users have said. When they are actually using feedback in a positive way and not to make colourful pie charts and brochures and then steering a service in the total opposite direction

How can we persuade people to pay for it? By refering to government legislation and having a loud and irratating voice I suppose?

How can we remind people it takes time to do it properly? By looking at old examples where it has failed and referring to the time scales that it took to get to that

How could you tell if a service was good at it? Lots and lots of evidence and happy servcie users I guess?

yodel :clap:
 
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ramboghettouk

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#33
Personally i'd rather have nothing to do with services, they seem almost by definition awful, unfortunately when i was applieing for benefits one guy in brent user group said "benefits and services go together as if your not using services you don't get the benefits" then the DWP clark said though he says he needs care there are long periods during the day in which he doesn't receive care

I'm in enough trouble for refusing to rot at a day centre as it is, at least now they've closed down the day centres that doesn't look so bad