Improving Understanding of Service User Involvement and Identity

We are a group of disabled people involved with Shaping Our Lives, a Disabled People’s Organisation, who have recently conducted research which arose directly out of one of our member’s own concerns. Our work responded to our observation that, while many disabled people are involved as service user representatives in social work, health, education and other human services, little attention is paid to the impact of this involvement on disabled people who give their time and energy to the role. Our research explored ways in which disabled service user representatives say inclusion can be improved so that disabled people’s input to service development, policy and practice is not marginalised or under-utilised but fully acknowledged, productive and personally rewarding. Our paper will report our research findings with the aim of improving understanding of good and bad experiences of service user involvement in the commissioning, design, delivery and evaluation of public sector services. We consider the challenges faced by service users in negotiating their dual role of being both service user representatives and recipients of services. We have found that when arrangements for user involvement do not pay sufficient attention to dismantling of barriers to participation, service user representatives experience organisational exclusion; they feel their contribution is neither adequately respected nor properly valued and is left in the half-shadows. When service user involvement is respectful and inclusive this has a positive and mutually beneficial impact for professionals and service users alike. We will conclude by offering clear practice pointers on how to enable the process of service user representation so that that it is a beneficial experience with positive outcomes for all.