Effective service user involvement

[davidc-k]

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?

 

[nickh]

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.

Well I am quite new to it. And as someone new to it I must admit that it has taken me months to sort out the various bodies/avenues involved - I had no idea of the sheer amount of 'Service User Involvement' that theoretically existed.

I say theoretically because one thing I have realised is that while nearly everybody pays lip service to the concept, in some cases lip service is all that it amounts to.

Anyway I welcome the launch of this forum and look forward to learning from people with more experience.

 

[Dollit]

David, knowing nothing about Service User Involvement I would like it if you could expand on the questions as quoted below as they don't mean a lot to me as they stand and I would like to understand more!

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?

Thanks

 

[ramboghettouk]

How do we persuade people to pay for it? thats the whiole thing as one disability rights guy put it "Once you pay people to represent a group, they cease to represent that group.

Seen those paid users with their snouts in the trough, if the proffessionals running the group are challenged the group gets closed and good bye money. so they're all yes men for the proffesionals

 

[nickh]

How do we persuade people to pay for it? thats the whiole thing as one disability rights guy put it "Once you pay people to represent a group, they cease to represent that group.

Seen those paid users with their snouts in the trough, if the proffessionals running the group are challenged the group gets closed and good bye money. so they're all yes men for the proffesionals

I think that's a very good point - although I haven't as yet encountered anyone who is paid (that may be because I am new to the scene). But I would go further and question the idea of representation - all the bodies I have been to are open to ALL service users and I am not representing anyone but myself . Once representation comes in then there are a whole series of questions about who is being represented, how their views are being sought etc. etc..

Nick

 

[davidc-k]

David, knowing nothing about Service User Involvement I would like it if you could expand on the questions as quoted below as they don't mean a lot to me as they stand and I would like to understand more!

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?

Thanks

People usually get involved to change something, if everyone thought the services they got were perfect then you could make a reasonable case for saying service user involvement was unnecessary. So the first question is really "how do we know service user involvement leads to a positive change?" or "improvement?"

Secondly, service user involvement has a cost even if individual service users aren't payed for their involvement. The more thorough your involvement, the more it costs. Suppose you want to design a new service and you want "service user involvement". You could invite a service user to sit on a planning group, you could send out a survey to existing service users, you could have a series of "stakeholder meetings", you could have an internet poll, you could contract a group of service user researcher to work along side you...

All of those options cost more than doing no service user involvement

Thirdly, service user involvement is often rendered meaningless by short timescales. For example "please send us your views on this six hundred page document by next Tuesday"

Fourthly, some services are acknowledged to be better at service user involvement than others, what characteristics help shift the good from the bad?

Does this make a little more sense?

D

 

[davidc-k]

How do we persuade people to pay for it? thats the whole thing as one disability rights guy put it "Once you pay people to represent a group, they cease to represent that group.

Seen those paid users with their snouts in the trough, if the professionals running the group are challenged the group gets closed and good bye money. so they're all yes men for the professionals

The Mental Health Foundation generally pays any service users for involvement in its projects, unless benefits are likely to be jeopardized. Many other organisations do likewise. Whilst I agree that it is unreasonable to expect individuals, particularly well paid ones (like me for example) to "represent" service users, I have no particular problem with anyone who wishes to earn a living in service user involvement as long as a) they're doing a decent job, and b) they don't make claims to represent the views of others.

To be honest, I'm not sure payment makes that much difference, I've sat on committees with some very vocal unpaid individuals claiming to speak on behalf of others who don't even know they're being represented...

 

[davidc-k]

I think that's a very good point - although I haven't as yet encountered anyone who is paid (that may be because I am new to the scene). But I would go further and question the idea of representation - all the bodies I have been to are open to ALL service users and I am not representing anyone but myself . Once representation comes in then there are a whole series of questions about who is being represented, how their views are being sought etc. etc..

Nick

There are quite a few people who make a living out of service user involvement (I'm one of them). The reason I want to identify characteristics of effective service user involvement is to try to address the issues you raise in the rest of your post

 

[nickh]

To be honest, I'm not sure payment makes that much difference, I've sat on committees with some very vocal unpaid individuals claiming to speak on behalf of others who don't even know they're being represented...

well I guess that is probably a characteristic of lots of committees.

I will say that I find it a big effort to be vocal and speak-up in meetings but one thing I don't do is claim to be representing anyone. None of the meetings I have been to so far have been like that really. As I've said before I think there are lots of problems with representation.

I will try and think about your other questions but in general - again repeating myself - I am pretty new to SIU and hope to listen and learn.

Nick.

 

[ramboghettouk]

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

 

[nickh]

Survivors Speak Out

Thanks - I had never heard of that organisation and the tale is a cautionary one.

Are there any similar national organisations now?

Nick.

 

[yodel]

Hi everyone

Just stumbled on your conversation and would like to add a point please. At a local service user involvement meeting (run by the local PCT), where the discussion was regarding very important issues about major changes/recommendations to be made to the entire psychiatric services a service-user asked 'psychosis -is that when you're in a coma?'. This was the same set of service users that they pull out of the woodwork everytime they need service user involvement. The meeting was full of jargon and statistics and was hard to follow, resulting in the PCT being able to pass their recommendations.

yodel

 

[nickh]

Hi everyone

Just stumbled on your conversation and would like to add a point please. At a local service user involvement meeting (run by the local PCT), where the discussion was regarding very important issues about major changes/recommendations to be made to the entire psychiatric services a service-user asked 'psychosis -is that when you're in a coma?'. This was the same set of service users that they pull out of the woodwork everytime they need service user involvement. The meeting was full of jargon and statistics and was hard to follow, resulting in the PCT being able to pass their recommendations.

yodel

Yup - indeed the whole world of Service User involvement seems to have a world of jargon all of its own. I have had, and still have, problems understanding the various bodies involved (which tend to be known by their initials) and even more so in trying to figure out various levels of responsibility (PCT's, MHT's and Councils) - but as far as I can make out many of those from the bodies themselves haven't worked that one out .

And I notice the same people at different meetings - of course I am aware that I am becoming one of those people myself to some extent (my involvement is still pretty marginal). But those who attend are a tiny fraction of the total service user population. I know this is a problem in many walks of life and I don't have a problem with activism, but there are peculiar problems which I would guess quite a few service users have - on a not too good day it is hard to get out of the house and go to a meeting (on a bad day it is impossible of course). I don't know how you get round any of this.

Just agreeing really

Nick.

 

[ralph1]

When I was service user representative I used to actively meet other service users in their own social environment, explain developments, and get their views as to what needed addressing.

I will admit that there was a heavy dose of suspicion that I was sitting on the providors board, and not all would talk openly, but I tried to work around that.

I was entitled to claim a payment for attendances at meetings, but I did not ever claim them, therefore in my view no one could own me. But that is my own sense of democracy.

I was lucky that our lead also had a good view on listening to user voices and trying to act on them. But that is not reflected in other areas where they only pay lip service and then go their own sweet way.

By having a user body paid directly by a trust is a no no. the body must be funded independantly of the trust.

I agree with the views of thise who use short short hand letters, it is confusing and should not be encouraged.

 

[ramboghettouk]

Independent groups, one of my friends tryed to hire a rfoom for an independent group, it was too expensive, no user group is independent, i have doubts about thois web site and where the funding is coming from

Much the same when politicians use the word independent, poor people can't manage to create independent groups, with money you can have all the independent groups you want under your thumb

The group only has to criticise those funding it for it to be closed down then reopened with another set of people thats repeated to the proffesionals get the result they want

 

[connect]

Independent groups, one of my friends tryed to hire a rfoom for an independent group, it was too expensive, no user group is independent, i have doubts about thois web site and where the funding is coming from

If you're talking about the Mental Health Forum website, it's coming out of the pockets of private individuals (see here:
http://www.mentalhealthforum.net/forum/showpost.php?p=5490&postcount=15 ). I hope this clears up any confusion .

 

[yodel]

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

 

[ramboghettouk]

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]

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!

yodel

 

[nickh]

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!

yodel

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.