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.
