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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