1. To what extent is ‘lived experience’ understood as a form of evidence in parliamentary process?

2. What are the methods and processes through which lived experience features in the work of the Scottish Parliament?

3. What guidance and/or frameworks can be put into place to support the integration of lived experience into parliamentary business in ways that align with principles of ethical participation and rigorous research practice?

Re living trauma

People too busy trying to survive/cope

Feedback loop

Time and energy

Ability to step back

Support on offer

Different lives - differing views

Privilege, class, language and financial security

Who 'owns' LE?

LE must be valued beyond storytelling

"You can’t have lived experience without the consequences of the lived experience."

"The NHS, charities, and research institutions increasingly “professionalise” lived experience, but without instating proper structures, learning, fair pay, or pathways for career progression. The result is a troubling paradox: we are included but disempowered."

o   Formed a l.exp group, 6 people on the group and 12-15 in the wider network. One thing they asked for was a resource of alternatives to medication. Group shared their experiences to help create the resource, we couldn’t have done it without them.

o   Regular meetings with the network, share stories, bring it together and then review it to make sure they are happy to share it, it sits within NHS Fife website – called Pain Talking

o   https://www.nhsfife.org/paintalking/

o   Exactly what Include for Good is all about, lots of different experiences. Sometimes the change we want to make is out with our control. Worked with Matter of Focus to monitor outcomes. Check in before meetings to confirm they are comfortable with it, check in after meetings to see how people are feeling.

o   This co-production example is in Moray with MS Society, DHI, citizens, NHS, HSCP etc  - https://www.dhi-scotland.com/resources/backpack

o   Co-production project, with women with learning disabilities at risk of gender based violence. Feedback was that staff didn’t feel capable of supporting these women. Created a toolkit, created by the women, launched a few weeks ago and the interest has been incredible. People have shared that they need training on how to support these women and now looking to co create training resources. Authentic voice – they have resources around trauma informed risk assessments.

o   https://safelives.org.uk/survivor-voices/av-principles-and-model/

o   https://authenticvoice.scot/

o   Groups shape all the output, frameworks, workshops and input into research we are doing

o   https://www.researchdata.scot/news-and-insights/new-report-highlights-impact-of-the-scotland-talks-data-public-panel/

o   https://www.pedri.org.uk/

o   The importance of "reporting back" and keeping people informed and really marking that impact that their input has on decisions, policy and shaping change. It's as important as being transparent about lived experience in external publications.

We only had time to have a brief conversation about this and it was suggested that it would be good to discuss the Vouchers are payment topic at the next session. If anyone has any clarity on this or any resources that would be helpful, please feel free to share on Teams or email me.   

o   https://www.gov.scot/publications/guidance-paying-participant-expenses-compensating-time/pages/2/

o   Scottish Government guidelines are for internal staff, but for those guidelines to apply, the organisation needs to go to HMRC and explain what you are doing and how it qualifies as research and engagement and get them to sign off on it.

o   There were also examples given from organisations who have given vouchers to participants and it didn’t affect their benefits

https://www.disabilityrightsuk.org/resources/service-user-involvement-and-payments-how-they-affect-benefits#_Toc121305071