Lived Experience, Research & System Change
Updated: Aug 27
Lived experience shouldn't just be invited into the room. It should help shape what happens in it.
KF is proudly a Lived Experience Recovery Organisation (LERO).
That means lived and living experience isn't an advisory panel we wheel out when somebody needs a quote.
It's in our DNA.
Our organisation was created from lived experience, our services continue to be shaped by it and we believe people affected by substance use should have genuine influence over the services, systems, research and policies that affect their lives.
That includes people experiencing substance use and recovery.
It also includes families and affected others.
From experience to influence
KF participates in and develops opportunities across:
CLERO and the wider LERO movement including research and mentoring
Derbyshire Health Inequalities Partnership (DHIP) work
Derbyshire Public Health Steering Group
Community-led research
Academic research partnerships
University collaborations
Co-production
Service design
Consultation
Evaluation
Lived-experience panels and forums
Community engagement
Conference speaking
Professional training
Research recruitment and participation
Policy conversations
System change
Challenging stigma and inequality
Our role is often to bridge two worlds.
We understand professional systems, commissioning, safeguarding, research and service delivery.
But we also understand what those systems feel like from the other side of the table.
That's important.
Because services can look brilliant on paper and still be almost impossible to access in real life.
Research can tell us what populations experience while missing the voices of the people least likely to participate in traditional research.
Policies can be technically correct and still completely misunderstand what life actually looks like for the people they're designed to help.
Lived experience helps expose those gaps.
Community research
We want people to be more than research subjects.
Through our involvement in community research, CLERO, DHIP and academic projects, we create opportunities for people with lived and living experience to contribute to research questions, design, delivery, interpretation and dissemination.
That means asking communities:
What do you think we should be researching?
Not simply:
Will you answer our questionnaire?
We are particularly interested in areas where our frontline and lived experience repeatedly show us gaps in understanding, including:
Family and affected-other recovery
Substance use and domestic abuse
Neurodivergence and substance use
Mental health and addiction
Trauma
Stigma
Safeguarding
Health inequalities
Access to treatment
Recovery capital
Criminal justice
Digital exclusion
Women's experiences
Children and families
Community-based recovery
What happens beyond formal treatment
Lived experience leadership
We also want to challenge the idea that lived experience means simply telling your most painful story in a room full of professionals.
That's not meaningful involvement.
People with lived experience bring knowledge, expertise, ideas, challenge and solutions.
Their contribution should be valued accordingly.
Our ambition is to develop more paid and supported opportunities for lived-experience contributors, peer researchers, community researchers, recovery navigators, speakers, trainers and leaders.
We want people to be able to move from:
being consulted → to contributing → to co-designing → to leading.
Changing the system
Ultimately, we don't just want KF to help people navigate systems that don't work particularly well for them.
We want to help make those systems better.
That means bringing what we hear every week in groups, one-to-one support, advocacy, family work and community activity into the places where decisions are being made.
It means being prepared to say when something isn't working.
It means bringing evidence alongside experience.
And it means making sure the people most affected by decisions aren't the people with the least influence over them.
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