Evidence from many service users is that, despite the best intentions of social care organisations, their experience of participating in developing social care practice can be patchy, tokenistic or actually negative.
Sometimes this stems from the model of participation that has been used. For example, consultative arrangements can draw in a wide range of views but may not be effective if the results of the consultation are ignored or used to legitimise an agency’s own pre-set agenda. By contrast, small and experienced user groups and direct action can be an effective way of getting things done.
One of the problems a social care employer may face is deciding what type of participation to try. Different people want to participate in different ways and there is widespread agreement that successful service user participation is based upon having varied and flexible approaches that allow this to happen. Here, we outline some of the methods that can be useful to engage people who use services from all backgrounds.
Consultation through meetings, questionnaires and focus groups is probably the most frequently used model of participation, although it is most criticised by service users because there are concerns that consultation meetings may operate according to a fixed agenda.
Ways in which organisations have tried to improve the quality of consultation meetings include having meetings with a formal system for accounting for decisions that have been taken and an opportunity for discussion and planning for the future.
The choice of venue is something that can make meetings simultaneously more inclusive for some groups and exclusive for others. For example, meetings in pubs can reach people who would not want to travel to official locations such as the town hall, but would exclude others who would not go to pubs on religious or moral grounds. This means that it is important to consider carefully the choice of venue. Guidelines for venue choice include:
● Do not assume a venue is accessible because the website says it is. Ask to see the access audit or visit the site.
● Make sure the venue is easy to find.
● Make sure car parking can be reserved for service users who are not necessarily blue badge holders.
● Give plenty of clear and accurate directions to the venue.
● Ensure that there are accessible toilets.
Forums for specific service groups, such as national and local older people’s forums or local and regional forums for people with learning disabilities, may avoid some of the criticisms that consultations are run by service users for service users. Forums are more democratic in that they have a recognisable voice and they have been able to effect changes to services.
Campaigning organisations range from large national to small grassroots organisations. Larger organisations are sometimes seen as coalitions for service users, rather than of service users, although they can offer a less time consuming way of becoming involved, while creating a sense of solidarity and shared interests among their memberships. In addition, service users are able to increase their levels of involvement by becoming volunteers, paid workers or trustees.
There are different models of advocacy services, but each share similarities in that they all aim to speak on behalf of another person or, in the case of self advocacy groups, to speak on behalf of themselves and fellow members. There are disagreements about what is meant by advocacy and the understandings and expectations of people who use advocacy services may not be the same as the service providers.
While advocacy services are available in most parts of the country, not all service users have equal access to advocacy services. For example, advocacy services for people with dementia or people with communication difficulties are less developed than those for people with learning difficulties or mental health service users.
User-led groups or networks
Participation led by service user controlled groups or networks has the advantage of being more firmly rooted in the actual aspirations and preferences of service users but has often faced barriers in terms of funding. Consulting directly with service user-led groups, or asking them to undertake consultations on behalf of another organisation, has greater credibility with service users and leads to better quality results.
Until recently, little attention has been paid to ensuring that systems for participation take account of the diversity that exists among service users in terms of their ethnicity, sexuality, and life experiences. Now, there is greater awareness of the need to include “seldom heard” or so-called “hard to reach” groups. The main reasons why this should take place are:
● All service users have equal rights as citizens to have their views heard.
● Service users comprise an extremely diverse group and this should be reflected.
● Members of seldom heard groups may have separate needs for participation.
The lack of more inclusive approaches to participation means that while some groups complain of “consultation fatigue” others argue that no attempts are even made to consult with them. There is also a danger that service user participation is seen as applying only to those who are currently receiving services and fails to reach people who do not receive a service.
There are some groups of users who are more stigmatised than others and they may feel reluctant to disclose their status as a service user. In these instances, it may be necessary to use methods aimed at providing an individual and collective voice for service users at risk of being excluded from more mainstream traditional types of involvement. For example, separate focus groups for people with a learning disability have been used as part of Best Value consultations.
● SCIE Practice guide 11: The participation of adult service users, including older people, in developing social care www.scie.org.uk
● SCIE Resource guide 10: Commissioning and providing mental health advocacy for African and Caribbean men www.scie.org.uk
● Audit Commission (2003). Connecting with Users and Citizens. London: Audit Commission www.audit-commission.gov.uk
Originally published in the 5 June issue of Community Care under the heading Putting into Practice User Led Participation in the Proven Practice section