Good afternoon people. I am Keir Hardie, a member of the Highland Users Group, and I'm here to talk to you about User Involvement: The Scottish Context. The Highland Users Group is a collective advocacy group, which represents the interests of users of mental health services across the Highlands. Our main aim is to improve the way in which we, as users of mental health services, are treated by campaigning to improve the rights, services and treatments of people with mental health problems. Our Communications Project challenges the stigma surrounding mental health problems through working with young people, the media and delivering awareness training to professionals. We work on a local, Highland and national level to influence policy and planning, and strive to ensure that the user voice is heard clearly in the development and delivery of services.
When talking about such things as user involvement it's perhaps better to address at the start the issue of jargon. It's pretty much universally accepted that jargon is a bad thing, it's hard to find anybody with a good word to say about it. I have, however, for jargon in theory has a more precise technical meaning than the vagaries of the English language as it is commonly used. So it is particularly unfortunate that so often jargon does exactly he oppositet, often because the precise meaning of the phrase depends on who you ask or what your sub-speciality is or because there is a whole family of similar phrases. For instance, if you have a mental health problem and a substance misuse problem that is called dual diagnosis, but if you have a mental health problem and a learning difficulty that is called dual diagnosis. What it is called if you have all three I don't know, but I suspect that what happens is that you are called dual diagnosis by different people meaning different things. And so before we start getting into user involvement we'd better shave off all the rest of the family. The other members of this family which could be confused are Public Involvement, Patient Involvement, Community Engagement and User Action. I think 'participation' refers to the lot of them. If you do a search for a definition of these on the internet you get lots of results like 'there is no clear definition of user involvement' or 'our partnership group plans to arrive at a clear definition of patient and public involvement' which is clearly a problem for all of us, so I'll just have to take a stab at it myself. I could have phoned a few people and asked them but their definitions would not have been definitive anyway. Patient Focus Public Involvement says it's trying to achieve:
" A service where people are respected, treated as individuals and involved in their own care
" A service where individuals, groups and communities are involved in improving the quality of care, in influencing priorities and in planning services.
" A service designed for and involving users.
This seems to me to be a mix of Public Involvement, Patient Involvement, Community Engagement and User Involvement, so that doesn't get us very far. Let us take the easiest first. Public Involvement seems to me to be the involvement of anybody, mainly normal people. I expect some of the more on message among you are disgusted by my use of the word 'normal', but please, we're all adults here, let's get over it. I could replace the word with a heap of jargon that meant the same thing, but surely that would be really insulting. I am well aware of the fact that for instance mental health and mental illness is a continuum and there is no real dividing line between the likes of you and the likes of me, but will services ever reflect this? Alas, I am a product of my environment and cannot begin to imagine such a thing. The theme of this conference is 'The Art Of The Possible,' something I don't think we've even begun to explore. What's possible now, with our limited imaginations and especially our limited resources, is a different matter however.
The difference between Public Involvement and Community Engagement seems to me to be purely geographical: where Public Involvement is done in a particular area it is called Community Engagement, for instance if you are trying to build a secure care centre it can be the attempt to convince local residents that it wouldn't be better located near less local residents. Public Involvement and Patient Involvement seem to be used interchangeably for users of for instance Primary Care services, for everyone has access to a GP, whereas User Involvement generally refers to users of Community Care services or other minorities with what are regarded as 'special' needs. User Action is what User Groups do because their members think it's a good idea, not because providers or commissioners have asked them to, such as campaigning or providing services or training, which leaves us with User Involvement in this context basically referring to the way users of Community Care services are involved with the way services are designed, planned and run at any level.
Phew! We got there in the end.
There are basically two levels to user involvement, which can basically be thought of as ground up and top down. You should probably be doing both. Many of you are.
The ground up approach can be characterized as what you try to do to be responsive to your clients or users or members or whatever you call them en masse, whether it be questionnaires or users meetings or what have you. This can be done with any client group, if your client group needs it plenty of work has been done on special tools or methodology for this. It is also what many of probably do already, informally asking your users what they think of your service and how it could be improved, and taking it on board.
The top down approach can be characterised by taking the boring committees you have and inviting someone like me to join. This is more demanding but could made more accessible: there could be a philosophical tension between treating us the same and making allowances for us, but generally I've found that where there are obstacles to my meaningful participation the changes I would wish for would benefit all stakeholders present at the whatever it is - for instance nobody likes not getting papers until the beginning of the meeting, or going all day with a working lunch and no proper breaks.
Conferences and the like vary from quite ground up consultation events to very top down conferences and seminars all about epidemiology and stuff. But how well service users are accommodated seems illogical and resource led - the more unsuitable the event is for the average user the more generous the organizers will be with expenses and the like, for there aren't many coming anyway.
Expenses - it would be possible to go through a big long list of what should be paid, but I saw a booking form for an event recently that said 'reasonable expenses will be paid,' and it really is that simple. The principle is that no service user should be out of pocket as a result of their involvement. At this time, however, adherence to this is variable. There seems to be a ladder which runs thus - free place, travel, accommodation, subsistence, childcare, loss of earnings, and rarely does it reach the top. My subsistence claims are usually low or non-existent as you can only claim back what you can afford to spend in the first place - many of us are on benefit, but not so much benefit that we can afford to lend you seventy quid, or even have that much money for more than a few hours between cashing our books and paying our bills. And we can only claim for what you tell us you'll pay for - I think it's more often than not that I have only found out that subsistence is payable by ringing up or emailing and asking, which I find degrading and makes me feel pushy. You'll probably tell me it shouldn't, but funnily enough I have mental health problems. And how do I claim it back? Usually I arrive at an event or meeting and nobody brings it up, so I have to be pushy again and ask. They then usually give me a form to fill in, itemizing everything, with receipts, so they can send me a cheque later. On one occasion having asked someone how to claim subsistence I knew was payable I was directed to someone else who when I tracked him down asked to be invoiced. Let's hope I've saved enough money to eat on the way home, and to live on until I next cash my book. Sometimes I think there is a real lack of consideration given to the what life is like for us - we all know that most users of Community Care services are living on benefit long-term. I find involvement more locally much simpler, but only as often no expenses are incurred, especially now I've got my bus pass. I'm drawing to towards the end of my expenses rant now, but the reason I'm so passionate about it is that often I find I'm very busy indeed and I feel my limited energy and concentration is not best spent on receipts, forms, checking what's payable, checking whether you're booking my train tickets or I have to sort it out at my end, checking whether you're booking my hotel or I have to sort it out at my end, and ekeing out my money. Please be explicit about your expenses policies and how many free user places you have. I hope one day that work such as that done by SCIE can help rid us of some of these complications. It's a matter of principle, but I'd probably be less passionate about it if I wasn't so busy, and that brings us to capacity.
There's a huge and growing demand for user involvement from my client group - they can't get enough of us. And although they may be at different stages in the process the trend is the same for all users of community care services. I hope this talk is okay, it was supposed to be wonderful but I was too busy to give it the attention I had hoped. Demand for me and my colleagues far outstrips supply. But some of us have jobs, and we all should have lives to lead as well. I feel there needs to be a lot more of us. I long for they day when I know I could give it all up if I wanted and rest assured that for all the things I do someone else could do it just as well. Initiatives such as Allies In Change attempted to address this, and did, to an extent, but it's still not enough. For now all I can do is hope that I'm careful enough not to let myself get burnt out, exhausted and tormented by the memory of too much work done shoddily under too much pressure in too short a time, but it happens to some of us from time to time. Even many of the more stable amongst you must have faced the dilemma of being consulted upon something with a timescale so short it is frankly an insult, but if you don't respond your voice won't be heard. Until something, I don't know what, is done to build our capacity, there will never be enough people to double up on every committee, never be time to always brief everyone properly, nor to always let people ease into things at their own pace.
We're not like nurses or psychiatrists in that we have to go and brainstorm what we can do to make user involvement more attractive. For my client group, at least, there's usually enough of us mad enough or passionate enough to want to do it even under existing conditions. But often although the will is there there is not the capacity to build up the capacity of these individuals or to provide staff to support them if they wish.
I'm sorry if a lot of this is rather negative but there is positive stuff to come.
Without dwelling upon it too much I cannot talk about user involvement without talking about consultation fatigue. Earlier this year I went round the country talking to users and carers as part of the Scottish Executive's Mental Health Services Assessment Project, and I don't think there was one meeting where they didn't say they were sick of saying the same things in consultation and nothing happening. I have seen reference to consultation fatigue citing papers published in 1998 where users were saying they were sick of being consulted and saying the same thing and nothing happening. Lip service is paid to preventative being better than curative, but they will not throw the money at it which is required to reduce demand in the long term. They will give you money for a pilot project which may not be able to continue even if it is successful and satisfies a previously unmet need, but they are less likely to say 'everyone thinks your service is great, here's some more money to do more of the same.' We have power and influence on their terms. And soon enough that's how we think. Partnership working is a double edged sword: it can be very satisfying to be involved in something like the See Me campaign where a wide range of organizations with quite different value bases can work together on a specific task harmoniously. But in other situations sitting round a table with eleven professionals who have a shared understanding of what is and isn't reasonable can be very draining, they all seem so nice and clever, they can't be wrong, you must have got it wrong. Forget what the users sent you to say, it's now clear to you that it's silly, you'll just have to explain to them when you get back. We have to be strong in those situations, fighting the mistrust of our own judgement that many of us have had to learn to stay stable, negotiation and debate are things many of us find excruciating.
And that's the end of the negative stuff!
Where are we coming from, and where are we going? I won't speak for other client groups here, they can do that themselves, but the history of user involvement in Scotland has been rock and patchy, although I use the word 'patchy' here in its genuine sense of meaning lots of good bits and some not so good, not the usual meaning which has become jargon and is a euphemism for not entirely awful. But we now have a diverse range of user groups covering most of the country, many of them quite different, usually because they grew naturally and were not formed to a template. Some of them were commissioned because they local authorities did not want to carry on without one, and I think this is to the credit of those authorities. It is a credit to the maturity and sophistication of the modern user movement too that they don't get hung up about that sort of thing anymore. User groups across Scotland are now working together towards a national user body which will represent a spectrum of user opinion to unite rather than divide. We don't yet know what form this organisation will take as we have to ask a wider range of users - that's where our heads are at nowadays. We are having a conference probably in the summer which the Scottish Executive has agreed to fund to the tune of not a lavish amount but not an insult either, and the focus of this event is to see what type of organisation the users want.
Should users be paid for participation? That is a debate that has not yet taken place, and I don't know. This is complicated by the fact that even if you are willing to pay me for a small piece of work which I am capable of doing, which does happen, I am not unusual in that because I can not work consistently enough to hold down a job I am on Incapacity Benefit which would be jeopardized by any such payment.
I'm sorry if this has seemed like rather a dogmatic personal view but there are people in the room whom I feel I know, and whom I care about, and this happened because we spoke to each other like this. We spoke about what we were passionate about, and that's how we got to know each other and really communicate.
And lastly I'd like to say that don't feel too guilty about some of the things I've been saying, nobody gets it all right, and I know you're mostly here because you care about us. I know how passionate some of you are about your work, often to the point of being cross with me about calling it your work, or daring to talk about us lot and you lot. One of the nice things about what I do is I get to meet wonderful people, users, providers, carers and commissioners, and even better, get to know them. And having established that I love you all we'll leave it there so I can get my coffee.
