The Simon Heng column

Now and again, I question the way I use my time on service user
issues. When I’m stuck in the middle of a meeting discussing the
minutiae of policy papers or writing funding applications, I wonder
what this has to do with enabling service users to express their
opinions.

But my enthusiasm was recently reignited by an innovation from
the director of social services: rather than meet the usual
representatives, she invited a cross-section of service users and
carers for a long lunch.

There was no written agenda, no format, just an opportunity for
people to tell her about their experiences, good or bad, about the
help they were getting from the department.

Some people had already worked out what they wanted to say. Some
clearly felt uncomfortable and reticent, but over the course of two
hours, encouraged by each other’s stories – and the director’s
willingness to listen – we got to hear what was important, and what
could make a real difference to their lives.

Once again, it struck me how many of us teeter on the edge of
personal disasters. A missed Home Care call, a lack of transparency
in decision-making, or a lack of information about entitlements;
any of these could make the difference between family misery and a
manageable life. In spite of this, by the end of the meeting, most
people looked relaxed, which seemed to show that it had been two
hours well spent.

This week, we also held our annual conference. Apart from the
difficulties in transporting dozens of disabled people to and from
the same place (which showed us, if we needed reminding, that we’re
disabled by the way society is structured), we felt that the
conference had worked. By that, I mean that we had a chance to
share experiences, feelings and thoughts about what empowers us and
the difficulties we face. I hope other people felt the way I did,
going away feeling less isolated and more able, as part of a group,
to continue to make changes, to make users’ and carers’ lives more
manageable.