Challenging the opponents of lived experience involvement within services
Tom is an IF member and one of our consultants with lived experience. In this blog, he challenges some of the negative press that has been published recently on lived experience.
Working with individuals with lived experience as a means of changing and improving services, as well as the practice of coproduction, has been an essential part of the Fulfilling Lives programme since 2014 and now of Changing Futures. Advocates of coproduction make the case for this approach through theoretical frameworks and more significantly, through evidence-based practice. Nevertheless, as this philosophy gathers momentum, opponents of Lived Experience (LE) involvement have started to voice their concerns in the written media over recents months. As an advocate for LE myself, I can’t not challenge this growing opposition. As LE ambassadors, we must address the statements that employing lived experience is simply a fad or a short-cut to obtaining a significant voice within system change.
Critics of LE have stated that everyone has some kind of “lived experience” in their past, and that all experience is “lived”, as it cannot have happened once you are deceased. This is technically true but is a rather crude generalisation. It unwittingly dismisses the experience that relate to very specific services and changes that might be needed. In conjunction, these changes can only stem from the difficulties that people experience as clients rather than non-service users, or even the actual service providers.
Adding the voice of an individual’s specific experience and analysis of a service isn’t replacing the position of an expert from a professional background, since the involvement of LE in service implementation is not a zero-sum game. Coproduction with beneficiaries of a particular service simply adds to the information and data which needs to be obtained for service improvement. This will come in addition to the vast quantities of information that have generally been gathered from other parties, as a key feature of analysing services for any progress that might be deemed necessary in the future.
It has recently been cited by critics, that no qualifications are needed for particularly well paid LE roles and that already scarce resources should be deployed elsewhere. I find this view rather selective. Any advertised position will have a fixed set of criteria that any post holder would have to fulfil, in addition to the relevant experience they may have previously gained. The extent to which they match the job description and person requirements is what will determine their suitability for the role.
As part of the evaluation of the Fulfilling Lives programme, CFE looked at the benefits of involving people with LE in the workforce. Their report states “The relationship between employer and employee is reciprocal. People with experience of multiple disadvantage have much to offer, and gain, particularly by working in roles supporting people facing multiple disadvantage” and “Having lived experience in a workforce can help to bridge the gap between services and those who use them.” It’s also worth remembering that all service providers are accountable to commissioners who will expect evidence of the impact of LE employment. It is on the basis of that evidence that they will determine whether allocating resources to LE is justified.
Another criticism of LE deployment is that a person’s individual input, no matter how sincere, will inevitably be viewed as far too subjective. Detractors argue that any information which someone with LE contributes can never be allowed to direct policy change within services, as any one person’s experience from a provider can be very different from another. I would argue that this does not take into account good coproduction practice which recognises that participation from the LE community would and should come from a wide variety of voices. Diversity is key to provide a vast body of information and data that can be analysed to produce a plan of action.
My final point relates to a recent Sunday Times article (dated 15/1/2023) that suggests that lived experience is being incorporated into the “Culture Wars”. While the article refers to authorship, I fear it could be extended to LE of care services. It is therefore essential that LE of services does not get absorbed in this narrative but continues to advocate its inclusion for system-change.
In conclusion, it is inevitable that the case for LE involvement in services will continue to be challenged in the future. However, this must not be viewed as a threat, but as an opportunity to promote LE in organisations, for the wide variety of reasons that have been stated by advocates over recent years. Ultimately, service development can hope to capture a wider public interest into its ongoing progress, due to the greater spectrum of involvement of those people who shape them, rather than by a perceived professional elite.