Service user involvement in community care services continues to
grow, bringing with it a debate about the status and role of those
of us who choose to give our time to this.
Understandably, most service users just want to get the help and
equipment that they need, delivered in a way that is sensitive to
their preferences and culture and as unobtrusive and efficient as
In that sense community care is no different from the judicial
system. Most of us want to know it’s there and that it will work
well for us if we need it. Most of us don’t want to get involved in
making it work, or pushing through changes to make it better for
everyone. But most of us are probably glad that other people –
apart from politicians – want to get involved. Like magistrates,
The difference is that the vast majority of people involved in
representing service users are disadvantaged on several levels.
Most of us are dependent on means-tested benefits. Most of us have
no experience of facing up to the huge bureaucratic systems of
local government and the health services. We have had to find our
own ways of breaking free of the mentality of the dependency
culture, without the briefing papers, seminars and training that
professionals have been able to access to inform their work. We
also have our disabilities, which prevent most of us from taking
decently paid employment.
Metaphorically, we’ve had to run just to keep up. We give our time
without payment, because for most of us any remuneration might
jeopardise our entitlements to the benefits we need – and might
even affect the money we receive for our care.
An awful lot of people around the country have put an awful lot of
time and effort into service user involvement. Free of charge.
You need us. The government has said so, your professional bodies
have said so. Academic research has highlighted the benefits of
involving us. Don’t you think it deserves some financial
recognition? You get paid for your efforts.
There’s one small problem, though. Where would the money come from?