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Lived Experience Projects
WSA Community often supports people who share stories about their own lived experience to drive change. This work has involved encouraging and building participation of people and communities to inform government services (including health services), national inquiries, policies and strategies.
The case studies featured here highlight just some of the WSA Community projects where people’s lived experience has played a vital role in designing services or building representation.
Enabling people’s experience to feed into the UK Covid-19 Inquiry
Reaching out to communities, listening to experiences and engaging with people who experienced bereavement during the pandemic
As part of the UK Covid Inquiry’s Every Story Matters listening exercise, WSA Community reached out to communities, listened to experiences and engaged with people who experienced bereavement during the pandemic.
Every Story Matters is the largest public engagement exercise ever undertaken by a UK public inquiry and every story shared helps the Covid-19 Inquiry understand the human impact of the pandemic and learn lessons for the future. Working with Ipsos, NatCen, Changing Minds and our long‑term partners Just Ideas, our work enabled a wide range of voices to share their experiences of the pandemic and feed into the public Every Story Matters record.
Our team reached out to different communities to ensure that the process was both inclusive and representative, especially of those less likely to become involved in a public inquiry. We took a trauma informed approach and also built in support for our team.
Ultimately, we conducted around 800 interviews, listening to people’s experiences of healthcare, social care, vaccines, health inequalities, test-trace-isolate, the impact on children and young people and the financial impact of Covid-19.
We also engaged people who experienced bereavement during the pandemic and facilitated listening events to really listen to their stories. We want to think everyone for engaging so honestly and openly.
The records for Every Story Matters are all publicly available and have been considered at the related hearings. While it was sometimes challenging to engage and speak to the right people, it was incredibly rewarding to feed into something that affected all of us and our families.
Sharing experiences of cancer to inform exhibition development
Developing, recruiting and facilitating a Patient Advisory Panel for an exhibition on cancer
WSA Community supported the Francis Crick Institute Public Engagement team during the development of the Crick’s ‘Outwitting Cancer’ exhibition by developing, recruiting and facilitating a Patient Advisory Panel.
The Panel, made up of people with lived experience of cancer or caring for others with cancer, were able to feedback on everything from curatorial themes to language and marketing. They also co-designed a film screening event and a zine, which was available in the exhibition.
Across the two years of working together, Panel members shared personal and emotional lived experiences. Their openness and honesty touched every aspect of the exhibition and was very much appreciated by us as facilitators and certainly we saw a key part of our role being to ensure we created a safe space for all the panel members.
Sharing lived experience to take action and drive change
Supporting advocates and campaigners living with non-communicable diseases to develop and share personal stories.
As part of the Our Views, Our Voices initiative, WSA Community and partners Just Ideas supported advocates and campaigners living with non-communicable diseases (NCDs) to develop and share their personal stories.
Our Views, Our Voices was launched by the NCD Alliance to meaningfully involve people living with NCDs and support and enable individuals to take action and drive change. The Alliance asked WSA Community and Just Ideas to run a two-day course in Geneva, where they supported 21 people from 13 countries to develop their personal stories into compelling narratives that highlighted the impact of NCDs and what needs to change.
Each participant had a powerful personal story to tell and the training resulted in more confident NCD advocates, capable of sharing their lived experiences publicly, mobilising communities and promoting the Advocacy Agenda of People Living with NCDs.
Once they had completed the training participants then supported others to take action and advocate for change within their home countries. To support their work we developed a comprehensive and practical manual these peer trainers could use as they delivered effective, need-based training. The manual provided detailed guidance on delivering a range of training activities, contextualising training sessions for a trainer’s own country and being effective facilitators.
Supporting patient and public voice partners with the NHS
Developing and delivering a range of tailored courses and supporting peer trainers
Working with our long-term partners Just Ideas and the NHS England Public Participation team, WSA Community supported Patient and Public Voice (PPV) partners over a period of 10 years.
This included developing and delivering a range of tailored courses and working with a group of peer trainers who were all PPV partners to deliver courses for wider PPV partners and NHS staff. While we were involved in many aspects, our main role focused on developing and delivering two key courses.
PPV Influence and Impact course
This two-day training course was designed for PPV representatives within NHS England who wanted to better understand the PPV role. Initially delivered around England, we later adapted the course for digital delivery.
“I really enjoyed this course. The pace was perfect, the activities were varied and interesting, there was plenty of time for discussion and comment and questions.”
Overwhelmingly PPV partners, who arrived at this course feeling alone in their role, left feeling invigorated and supported by the connections they made.
“The PPV training has empowered me – made me realise I am not the only one. I put my armour on – I am unstoppable.”
10 Steps to Public Participation course
This one day course, which delves deep into what participation is, what drives participants and good practice, was designed for NHS staff. Delivered either in person or online, the course increased understanding of participation and engagement in relation to health inequalities and looked at strategies to build inclusion of communities. It was supported by the brilliant Peer Trainers.
“It has helped me understand the process of working with people and communities and the beneficial insight it brings.”
Other WSA Community projects
WSA Community Development and Engagement projects