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Effective service user involvement

connect

connect

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yodel

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The service users I were referring to were a independent group run by a well known mental health charity. They are assisted by staff and have a 'user group' which these service users are part of. The point is they are chosen to represent all the borough service users but do not even have insight into their own illness. How can that be service user involvement?

yodel :rolleyes:
 
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ramboghettouk

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I thought that was part of the illness, not having insight, seeing they didn't realise they were ill, how come they turned up.

If you disagree with a shrink thats always lack of insight

I'm doing my best to be ironic
 
yodel

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If someone comes out with 'psychosis - is that when your in a coma?' I regard that has lack of insight. I believe if you turn up to see your psychiatrist then that show insight has you are searching for help which proves you think you need help, equals insight. The more you educate yourself the more insight you will acquire, surely? The service users in question turned up because the well known mental health charity told them it was a good thing to do and did not choose people who were able to understand the implications of what was being asked, therefore ticking their own box in regards to service user involvement. Sorry to be so negative but service user and carer involvement is not and should never be about just ticking a box and my experiences both has a carer and a worker in the mental health field tells me that there is still a long way to go! :unsure:

yodel :clap:
 
nickh

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If someone comes out with 'psychosis - is that when your in a coma?' I regard that has lack of insight. I believe if you turn up to see your psychiatrist then that show insight has you are searching for help which proves you think you need help, equals insight. The more you educate yourself the more insight you will acquire, surely? The service users in question turned up because the well known mental health charity told them it was a good thing to do and did not choose people who were able to understand the implications of what was being asked, therefore ticking their own box in regards to service user involvement. Sorry to be so negative but service user and carer involvement is not and should never be about just ticking a box and my experiences both has a carer and a worker in the mental health field tells me that there is still a long way to go! :unsure:

yodel :clap:
:) I think I can make a good guess at the 'well known mental health charity' yodel.

And I think that I can see, or have seen, examples of what you are talking about. My own experience so far has been that there is a near complete disregard, or sweeping under the carpet, of politics - the really central issues of funding, facilities, availability of treatment, attacks on benefits etc. etc. tend to get ignored or not discussed. I guess this is related to the fact that the Service User groups I attend are not independently funded. This hasn't made me give up on them at all, but I have altered my perceptions about them.

Nick.
 
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davidc-k

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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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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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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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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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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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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

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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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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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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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