‘Standing up for my human rights’: a group’s journey beyond consultation towards co‐production

Abstract

Accessible summary Our health service ran a group to support people to stand up for their human rights. People with learning disabilities have their own stories to tell about human rights. Group members created a character called FREDA (fairness, respect, equality, dignity, autonomy) to understand how human rights laws affect their lives. The group did not follow its original plan. The group shared their own knowledge and experiences with each other. Acting on what people in the group wanted was most important. Written by Tina O’Connor1 SummaryService user inclusion is a key component of a human rights‐based approach to healthcare and models of inclusion are developing rapidly. This article describes work with a group of NHS service users, designed to increase their knowledge of human rights, as part of a broader set of initiatives focussing on changing organisational culture. During a mutual learning journey, ‘co‐production’ emerged as a preferred model for promoting service user’s understandings of human rights. ‘Co‐production’, or sharing service design and delivery more equally with service users, led to outcomes that were initially inconceivable. During the group, co‐production appeared to be a vehicle for resolving dilemmas about services ‘empowering’ service users. This article considers how, when service user involvement and a HRBA are combined, a move away from tokenism towards collaboration, empowerment and redistribution of power is possible.

Treat me Right, Treat me Equal: Using National Policy and Legislation to Create Positive Changes in Local Health Services for People with Intellectual Disabilities

“…Two service user groups were designed, developed and run by multidisciplinary professionals to support people with intellectual disabilities to stand up for their human rights (Roberts et al . ). The core focus of the groups was to develop a meaningful understanding of human rights, underpinned by the FREDA principles of Fairness, Respect, Equality, Dignity and Autonomy.…”

“…As the group developed, service users began to challenge didactic teaching methods and make changes to the way in which the group ran (Roberts et al . ). This marked a shift towards more co‐produced group sessions and more meaningful shared outcomes for the individuals taking part.…”

A critical discourse analysis of the voices of people with intellectual and developmental disabilities within Australian community access service policies and practice: my voice, my policy

“…If, as some researchers have suggested (Epstein, Farina, & Heidt, 2014;Race, Boxall, & Carson, 2005), the "voices" of people with disabilities and their families or informal primary carers were to become embedded within every aspect of disability service policy development, this might address the perceived "power advantage" of service providers. Instead of "us and them", co-production relationships would exist between the professionals providing services and the service users, which could transform the welfare system (Brown & Osborne, 2012;Duffy, 2010;Osborne, Radnor, & Nasi, 2013;Roberts, Greenhill, Talbot, & Cuzak, 2011). Policies facilitating greater choice and control by people with intellectual and developmental disabilities, together with a co-production approach, could influence a paradigm shift away from the perception that people with intellectual and developmental disabilities are "passive recipients of services and burdens on the system, into one where they are equal partners in designing and delivering services" (Boyle, Slay, & Stephens, 2010, p. 23).…”

A randomised controlled trial to evaluate the impact of a human rights based approach to dementia care in inpatient ward and care home settings

“…The FREDA principles have usefully been applied in other health-care settings, including with people living with an intellectual disability. 144 Defining the issues related to the systematic and subtle ways in which human rights can be threatened in dementia care is, of course, a useful endeavour, but if this information is not shared in a way that is accessible to many people it will not influence the treatment that people receive. The PPI group is currently working with filmmakers to produce a series of short films that will represent these principles and their interpretation in an engaging way.…”