Andy Meakin
April 27, 2022

Lived Experience as an asset: Learning from fulfilling lives

Running from 2014 to 2022, the Fulfilling Lives projects are coming to an end this summer. Made possible by the National Lottery Community Fund, the programme sought ways to help people experiencing combinations of homelessness, mental ill-health, addiction, and offending behaviour more effectively.

In my previous article, I summarised learning from the Fulfilling Lives programme in relation to the effectiveness of service coordination, personal budgets, improved legal literacy [1], and related workforce development.

This time I wanted to discuss the centrality of lived experience as an asset in promoting systems change.  In doing so, it is important first to establish what we mean by systems change before explaining with examples why lived experience is so valuable.

What do we mean by systems change?

Systems theory defines a spectrum of system types.  This is often summarised in to three.  Simple systems, complicated systems, and complex systems.  

An example of a simple system would be a see-saw.  Exerting the correct amount of force on one end of the see-saw will lift the other end.  A simple system is close to being deterministic with a 99%+ level of certainty.  

An example of a complicated system would be an internal combustion engine.  The system has potentially thousands of parts which are dependent on each other.  They require regular maintenance and tuning by a skilled technician.  Problems can be difficult to find and diagnose.  Nonetheless, complicated systems often have a very high level of certainty due to the many component parts being standardised or interchangeable.  

A complex system may consist of a network of connections and feedback loops involving components at many levels.  The relationship between these components may not be fully understood by any individual.  Complex systems may exist in a changing environment which affects the inputs and outputs leading the system to have low levels of certainty.  Examples complex systems could include companies, cities, and organisms.

It is important to understand that in most contexts when we are dealing with systems change in the context of services for people experiencing social exclusion, we are dealing with a complex system.  Too often, commissioning organisations and service providers, subconsciously or otherwise, apply the mechanistic principles of simple or complicated systems to the design of services for people.  In doing so, the expectation is that there will be a high degree of certainty in the outcome.  But we know that when dealing with complex problems, like multiple exclusion homelessness, interventions that work in one place may not work in another or interventions that work for one person may not work for another.  Yet we are still often disappointed by the inconsistency of the outcomes produced.

What we mean by systems change is the development of a set of principles and relationships that put the intended beneficiaries of services at the heart of the continuous design, commissioning, and evaluation of services in the context of a changing policy and funding environment.  The aim is to create an adaptive learning system.  This has huge implications for commissioning, which we do not have space here to cover, but a deep understanding of the lived experience of people using the services is crucial.

Putting people with lived experience in the lead

A key question is who decides what good practice looks like?  Too often it is professionals and practitioners getting together and considering the technical or other competences considered indicative of high quality.  This approach has its place across industry.  An engineer is better placed to decide the tolerances of a component than the consumer.  But, in public sector services, too little attention is paid to the experience of the consumer [2].   Too little attention is paid to how the experience of services makes people feel about themselves, their services, and the world around them.

“People will forget what you said.  People will forget what you did.  But people will never forget how you made them feel.”
Maya Angelou

It is simply not enough to expect people consuming services to complete a questionnaire, attend a focus group, or to follow the compliments, comments and complaints process.  

Instead, organisations need to develop a semi-autonomous community of people with lived experience with whom they can forge a relationship.  Key to this will be identifying and supporting people to become leaders with lived experience and developing their skills and confidence to design and evaluate services.  This will be a day-in-day out effort rather than a one off exercise for a contract appraisal or to put together a bid or proposal.

Case based example of applying this idea to specific work

Relatively early in the Fulfilling Lives project in Stoke-on-Trent our Service Coordinators experienced difficulty in assisting people to register with a GP practice.  People experiencing homelessness were being asked for two forms of identification or being told that they had to register with a specific practice.  We approached the group of Expert Citizens [3] to check their experience which confirmed what we had found.  We did some research and discovered that the standard operating principles for GP registration issued by Public Health England stated that people experiencing homelessness should be registered and did not need to provide identification.  However, when we approached the CCG with the problem, we were told (paraphrasing) that the problem could not exist because GPs were required to register.  

Expert Citizens discussed the issue with the local Healthwatch and decided to do a joint mystery shopping exercise to evaluate the extent to which every GP practice in the City complied with the standard operating principles.  Expert Citizens designed and carried out the mystery shopping exercise by calling GP practices in the persona of a support worker wanting to register a person experiencing homelessness that did not have any identification [4].  The results identified that most GP practices in the City would not register a person experiencing homelessness without identification.  Publication of the report findings led to radio coverage of the issue and a presentation to the Primary Care Commissioning Committee of the CCG.  A second exercise was consducted two years later.  This time Expert Citizens and Healthwatch teamed up with the medical school at Keele University.  Expert Citizens supervised a group of trainee doctors on placement who conducted the mystery shop, analysed and presented the results.  Although it took some time, the situation has since improved with GP registration becoming more accessible for people experiencing homelessness.


Lived experience formed a central plank of the approach to workforce development discussed in the previous article [5].  Many people with lived experience have developed skills and confidence through their involvement that also contributed to the sustainability of their recovery.  

The development of a community of lived experience is no small task.  However, we saw in the example of improving the ease with which people experiencing homelessness can register with a GP that significant asymmetries of power and influence can be reduced leading to adaptive systems change.  Also, how lived experience can be a catalyst for bringing together interested organisations to pursue a common influencing goal.

We need to move away from a situation where the involvement of people with lived experience is a one off exercise as part of a list of complete and finish tasks.  Instead, unlocking the value of lived experience needs to be a way of life that underpins the day-to-day activity of every organisation working to tackle social exclusion.


[1] Specifically in the context of housing rights, the Care Act, and welfare benefit entitlements

[2] I co-wrote an article on this topic with Darren Murinas of Expert Citizens CIC (www.expertcitizens.org.uk) which was published in the academic journal People, Place and Policy (2020): 14/1, pp 24-34, “Insight through experience: How Expert Citizens are celebrating the nicest people” which you can read here:  https://issuu.com/voicesofstoke/docs/practice-insight-through-experience 

[3] Expert Citizens is a group of people with lived experience of multiple disadvantage that worked alongside the VOICES project and became a CIC to champion the value of lived experience

[4] The exercise was conducted twice, two years apart.  In 2016 (https://issuu.com/voicesofstoke/docs/gatekeepers_voices_and_hw_stoke_rep) and 2018 (https://issuu.com/voicesofstoke/docs/29495_access_to_primary_care_servic).  Subsequently a toolkit was produced to enable other areas to carry out the same exercise (https://issuu.com/voicesofstoke/docs/35390_-_voices_gp_toolkit_a4

[5] For more information see https://issuu.com/voicesofstoke/docs/voices_learning_programme_evaluation_2020_final