The language of service user involvement

It takes years of experience to be fluent in the language of service user involvement. There are likely to be misinterpretations of what it means to integrate lived experience into professional spaces and some researchers or clinicians not understanding the point of engaging in conversations to integrate lived experience and how it might benefit the research or the service.

The very language and labels used to describe service user involvement is varied and diverse, with some labels enhancing privilege and power of the service user, which lies in contrast to what it historically means to be a service user or consumer and being seen as passive recipient of healthcare.

Service user involvement can refer to individuals performing roles such as patient representatives, experts by experience, service user advisors, lived experience practitioners and lived experience researchers, amongst other labels. These labels perform a function and make it easier for experts by qualification to see the lived experience in the room and to draw on our experiential expertise. The exclusiveness of these labels limit our expertise to experiential knowledge of services and mental or physical disability and which may sometimes detract from the professional aspects involved in performing these roles and undermine the complexity of  performing these roles.

Within these roles we have to navigate personal and lived experiences, negotiate power dynamics, dilemmas of representativeness, queries of fitness to practice, ethical dilemmas in research or clinical decisions that might impact people like us, queries over our authenticity as service users due to professionalisation of our roles and our representativeness, not to mention the emotional labour and burden these roles place on us. However, the labels used to describe us do not convey the complexity of the roles and identities we negotiate. 

Through the process of my involvement as an expert by experience in a consumerist context (not a democratic and survivor led context), I have been given a voice by others to share and reflect on my experiences and perspectives relating to clinical practice and research processes. I have been empowered through these positions and have learned the diverse language used to describe this kind of work. I have also learned the language of working with the service provider and learning to convey my points to benefit other service users but in a way that makes sense and is understood by service providers, aligning with their agenda of cost-effectiveness, bureaucratic issues, benefits to clinical practice and research. Words expressed that do not meet with the agenda of the service provider often go in one ear and out the other, even if they are said and heard, they do not fit with the purpose of the agenda of the research or service.

Overtime like all in different occupational roles, we become skilled and more expert in our roles. This is the same for experts by experience, who for example, go from wanting to share their personal stories of mental or physical disability and of using services, to thinking strategically for example, thinking about how research methods might need to be thought about more ethically and how this might impact other service users.

The very process of service user involvement, learning what it is about, how you can allow learning from your own experiences so that service providers and research studies can learn from has been a language and culture which we are creating and shaping together. Different groups nationally and internationally are creating methods used to engage in this type of work, and this is happening in parallel to one another, rather than together, and so this results in a diversity of labels, language and research areas and processes within this type of work.

I think it is a difficult language to engage in because everyone has their own understanding of what service user involvement looks like and sounds like. Often the spaces are occupied by service users who are articulate and confident and can reflect effectively on their experiences. Often the voices who may be more chaotic may not be represented and excluded from the process. The language is also understood better by some experts by qualification than others, and so experts by experience need to justify their place in the room and shout louder to be heard in spaces that are service led.

This all makes for the case of experts by qualification engaging in conversations with experts by experience to listen to their needs and wants and to support in manifesting outcomes based on their suggestions. All service providers and experts by qualification need to do more to understand the language of service user involvement and seek to ensure service users’ voices are given spaces to speak and are heard and listened to, resulting in meaningful outcomes and actions based on our perspectives.

The language of service user involvement is also likely to change, with different experts by experience, survivors, disability activists and service users speaking different dialects of the language, but that we all belong to the same community and have the same interests and motivations that connect us in wanting to make a difference.