This blog was written by Lisa Ward (VAMHN Lived Experience Coordinator) on the key concepts behind lived experience engagement. To find out more about Lisa you can visit here website here or follow her on Twitter @LisaPinkyWard.
What is lived experience engagement?
Lived experience engagement (sometimes termed expert by experience engagement) is often used as another way to say ‘co-production’, however I’d also argue that sometimes the two are not the same.
Co-production is a term used within the statutory and charitable sector to describe the process of ensuring that the voices of those who will use services, are embedded in the design and delivery of the service. Think Local, Act Personal have a great ladder of co-production which talks through the steps to reach full co-production. It’s worth bearing in mind that whilst good lived experience engagement should be synonymous with co-production, sometimes it can be used to refer to any step on the ladder higher than the informing step.
Lived experience is often used as a way to recognise that knowledge doesn’t just come from academic learning, or from work experience, but also from experiences you have in your life. This knowledge should be seen as equally valuable to the way in which we gain other knowledge, but often it isn’t. A great example of how this plays out is how formal qualifications asked for on a job profile, but rarely is lived knowledge even referenced knowledge.
Often however, people think they’re co-producing when they’re really not. For example if you’ve already set your strategy without involving the voices of those with lived experience, you’re not co-producing. If you’ve decided what service you want to offer (say a support group) and the only say those with lived experience get is on the topics or timing of the group, that’s not co-production. Co-production often means going back to the start, recognising there is a need (for example survivors of sexual violence need support) but then working with those who might need the support to work out what that support looks like (whether it’s a group, one-to-one support, or something else entirely). Equally it means reflecting the voices of those with lived experience at every level in both the big and small decisions.
And why does it matter?
When businesses launch they often undertake market engagement to see what will turn a profit. If they get it right the business succeeds, if they get it wrong it fails. Health and social care is similar, if you create something which meets the needs of those who will use it, it will thrive, if you get it wrong, it won’t be used.
However, lived experience engagement/co-production is also more than this, as it’s about ensuring those with lived experience also deliver services. It’s able seeing lived and learned knowledge as equal, and understanding that embracing those with lived experience can be empowering for people using services (as it enables a sense of hope for people using services) but it’s also empowering for those who are delivering services as lived experience experts (creating an ability for people to feel like they’ve turned a potentially negative situation into a positive one). It also means other staff can learn directly from those with lived experience, and creates a much better equality of power with less hierarchy between roles.
A word of caution
Lived experience engagement/co-production also requires thinking and planning. In my experience people can also be taken advantage of (for example lived experience roles being frequently paid much lower than other staff roles), or it can be done in ways which is tokenistic (for example people are involved but they are only reflective of a certain group or type of person). Good lived experience engagement/co-production takes time and planning to do well and should be an ongoing cycle of learning and adaptation to really be both effective, and fair to those who are involved.
Likewise there’s an assumption that all work should be co-produced, or that consultation doesn’t add value. I’d argue that good lived experience engagement takes account of different wants and needs. For some people, consultation might be what they want to do, and thus is perfectly appropriate. Similarly, co-producing for the sake of co-producing can also be tokenistic, especially if there’s no real benefit to those engaged in the process. This is why good lived experience engagement required proper planning and time.
Original blog posted here on 14th November 2022.
VAMHN'S ECR BURSARY WINNER tina hamilton DISCUSSES HER ATTENDANCE AT the International Conference on Health, Wellness and Society
Have a read below to see what our ECR bursary winner Tina Hamilton did with their award money. To find out how you can apply to our ECR Bursary Scheme click here.
Using my VAMHN ECR bursary, I applied and was accepted to deliver a poster presentation at the Twelfth International Conference on Health, Wellness and Society, which took place in Johannesburg in early September 2022. I attended as an online only delegate and found this to be a wonderful opportunity to disseminate my PhD research to a wider international audience without the significant financial implications of attending in person. The theme of this year’s conference was Responding to Pandemics with a whole host of interesting talks from speakers across the globe, who discussed responses to the Pandemic in their respective countries and the actions taken to deal with the crisis. An underlying theme of most talks was the considerable health disparities that exist across most societies and the significance and prevalence of these during the Pandemic. My Poster “Adult Safeguarding Practices in NHS Mental Health Trusts: Challenges for Leadership and Service Provision” was included in the subtheme Public Health Policies and Practices in an online - asynchronous poster session. All-in-all, it was a very enjoyable experience and poster discussions were well facilitated. Online attendance also allowed for flexibility with viewing sessions and talks around other work commitments. My thanks to VAMHN for facilitating this wonderful opportunity.