Third sector organisations are increasingly looking for opportunities to incorporate the voices of lived experience into what they do. In this blog, THRE team member Alice discusses the importance of lived experience for strong decision-making. We also hear from Neighbourhood Networks on how they have embedded the voices of their membership into their governance structures.
Where possible and appropriate, decisions about a community should be informed by input and insight from that community. This is the principle at the heart of lived experience programmes.
This principle feels particularly resonant when thinking about marginalised communities or those who tend to face barriers when trying to access services. After all, those facing marginalisation or barriers to participation are best placed to identify what those barriers are and how they can be most effectively addressed. Sometimes, it may be difficult for someone who doesn’t have the same life experience to anticipate the unintended, and potentially negative, effects of a decision.
The good news is that more and more third sector organisations are considering how they can build lived experience into their decision-making. An interesting result of this has been seeing how different this can look depending on the organisation and their context.
For example, some ways third sector organisations have been incorporating lived experience into what they do include:
And these are just a few examples. But a core thread that runs throughout these methods is the ethos of designing with communities, not for them.
It’s important with this type of work to make sure that any opportunities for people with particular insight into an issue to contribute their views are meaningful for everyone involved.
Some things to be thinking about when planning this type of work are:
We actually have a full guide on Meaningful Participation, which you can access via the THRE webpage.
But, what does all of this mean in reality? Well, we’ve asked Neighbourhood Networks to share their experiences of incorporating voices of lived experience into what they do.
Neighbourhood Networks are an organisation that supports adults with learning disabilities, autism, mental health and psychical disabilities, to be involved within their local communities. They are committed to incorporating lived experience within their governance structure and have recently undertaken a review of how they do this.
Below are some insights from Neighbourhood Networks about what motivated them to prioritise lived experience as part of their decision-making.
Why is lived experience important for informing your work?
Lived experience is crucial to informing our work and without it we wouldn’t be able to implement meaningful change. We rely on our members to inform us of how life is for them and how we as an organisation can support them to achieve outcomes that are important to each individual. Without feedback from our members with lived experience we wouldn’t have the vital knowledge we need about living standards for our members and be able to adapt and address concerns that are relevant in line with the outcomes we support them with. We recognise that together anything is possible and we need to learn from our members to grow stronger and resilient within a social care climate that changes frequently.
Why did you choose to implement changes at board level?
We had a large board which included Member Trustees, who brought a wealth of lived experience with them. However, we recognised that our board sessions weren’t engaging for our Member Trustees and we found that they were limited on how they were able to engage at Board level. Because of this, their voices were being lost.
We recognised that members weren’t always keen to join board meetings due to the business nature of meetings and did not understand the responsibility of being a Trustee. We consulted with our Member Trustees, staff and other organisations and found that a shadow board may work for us. It would provide a safe space for members to share their opinions and ask questions they might have felt uncomfortable asking at a board meeting. It also meant that we could provide a space for people who wanted to be part of a group that helped develop our organisation and were motivated to use their voice to shape the running of Neighbourhood Networks without the pressure of being a Trustee and attending the Board Meetings. We have created an Advisory Group (Neighbourhood Networks Advisory Group (NNAG)) that will meet before Board Meetings and discuss board level information in an accessible format.
Are there any other ways you support lived experience within your organisation?
We have hosted a variety of activities over the years where Members supported the design of different things. We work with a Peer Support model that encourages Members who have valuable skills to share these with other members and are undertaking work to impellent Independent Networks across our organisation where Members can share their skills with each other and support the work of our Networks. We are hopeful that the shift in our governance allows us more opportunities for Members to co-design within the organisation and are hopeful that the Neighbourhood Networks Advisory Group will be prominent in writing parts of our Strategy for the coming years.
