Could do better

The 2001 Valuing People white
paper¹ declared that
people with learning difficulties should participate in all
decision-making processes that affect their lives. This was
expressly to include decisions made at individual, operational and
strategic levels. Participation in local strategic decision-making
was to be achieved through service user involvement in the newly
created learning disability partnership boards.

On the surface, our findings appear broadly encouraging: service
users in every area we visited were attending board meetings. Most
felt they were treated with respect and believed it was a good way
to voice their views. However, in some places much remains to be
done if the involvement of service users in strategic planning is
to become active and meaningful, rather than passive and
tokenistic. We identified two specific areas where improvements
could be made: the practical arrangements for board meetings and
the provision of information.

There was considerable variation in the organisation of the
meetings, with some struggling with even the basics. Service users
at one meeting complained about the lack of wheelchair access, and
in several places meetings were so large that service users could
not hear what was being said. In other areas, however, simple
measures had been introduced to combat these problems and empower
service users. One particularly successfully practice was splitting
meetings into sub-groups to discuss particular topics, thus making
both comprehension and active participation easier for service
users.

The intervals at which meetings took place varied from monthly to
quarterly. This had implications for the involvement of service
users in terms of their time and other costs, but appeared to bear
no relation to the help they received in order to attend. Only half
the people we spoke to had travel costs reimbursed by their local
authority, only four out of 10 authorities paid for support workers
to assist service users during meetings, and we identified only one
instance of service users being paid for their time. This resulted
in the costs of participation being borne by individual service
users or self-advocacy groups rather than by the boards or local
authorities. It is hard to imagine the professional board members
giving their time free and not having expenses refunded: why should
the rules for service users be different?

There was also evidence that information was not presented in ways
that made it accessible to people with learning difficulties.
Although nine out of 10 boards in our study were reported as
providing information in large print, only 30 per cent used
pictures or symbols to supplement the text and only the same
proportion provided minutes, agendas or reports on tape for those
unable to read.

The lack of fully accessible information represents a failure on
the part of the boards to make meetings inclusive. Until service
users can access relevant information they will remain unable to
participate fully in either discussions or decision-making. This
problem is not insurmountable, but does require the boards to
engage with local self-advocacy groups or others who have the
skills necessary to translate complex information into simple
language and symbols. Meanwhile, one local authority manager was
tackling the problem by spending time with service users before
each board meeting explaining items on the agenda and then ensuring
that their views were heard.

There was also dissatisfaction in some areas that information was
passed to service users at such short notice that consultation with
other people with learning difficulties before board meetings was
impossible. This militates against meaningful inclusivity but,
again, at least one area was getting it right – having established
a service users’ parliament to ensure that users attending board
meetings were representing the views of the wider population of
people with learning difficulties.

Our evidence suggests that there is still a long way to go before
all boards succeed in enabling service users to play a full part in
the strategic decision-making that affects their lives. However,
there is enough evidence of good practice, particularly in areas
with strong self-advocacy groups, to show that meaningful
participation can be achieved. CC Rachel Fyson is a research
associate at the Norah Fry Research Centre, University of Bristol.
She carried out the research with Gordon McBride, a self-advocate
researcher at Swindon People First, and support worker Brian
Myers.

References

¹ Department of Health, Valuing People: A New Strategy
for Learning Disabilities for the 21st Century, DoH,
2001