“A discomfort that is healthy and constructive”: 20 years of learning about lived experience and policy making

At the ALLIANCE and beyond, true and meaningful policy reform means turning people's experiences into lasting action on the ground.

Over the past two decades, lived experience has moved from the margins towards the mainstream of policy making. People are increasingly recognised not simply as recipients of care, but as experts in their own lives, and therefore in the services, systems and processes they engage with. While there is still more to do, this shift has transformed expectations about how policies and services should be designed. As the ALLIANCE marks its twentieth anniversary, our work to influence Scotland’s Maternity Care Standards (MCS) offers an opportunity to consider what we have learned about involving lived experience in policy making. In reflecting on that work, we spoke to Rebecca* who took part in the engagement that informed the Standards. Her reflections bring these lessons to life and point towards three key insights: how lived experience changes what policy pays attention to, what meaningful participation requires, and why implementation ultimately matters most. 

Lived experience changes what policy pays attention to 

One of the most important contributions lived experience can make to policy is to draw attention to aspects of peoples’ experiences that may otherwise remain outside the focus of formal policy discussions. Personal experiences can reveal where systems, environments and processes are not working as intended, shifting attention towards the conditions in which people receive care and challenging the assumptions on which policy is built. 

This was evident throughout our work on the Maternity Care Standards. Drawing on evidence from Trauma, Abandonment and Isolation – our joint research with Engender – alongside engagement carried out on behalf of Healthcare Improvement Scotland, we highlighted issues that people told us had profoundly shaped their experiences of maternity care. Among others, these included the distress caused by shared wards and broader medical settings following or baby loss, the need for equitable access to trauma-informed mental health support and the importance of greater accountability for the quality of care people received. 

These experiences helped strengthen the final Standards. They now place clearer expectations on NHS Boards to provide equitable, trauma-informed care, strengthen recognition of miscarriage and bereavement, and reinforce mental health as a core component of high-quality maternity care. 

For the people who contributed, however, bringing these experiences into policy was not an abstract exercise. Reflecting on her own involvement, Rebecca described revisiting their maternity experiences as “an odd thing”, bringing back “distress and anxieties that had, for the most part, been quiet for years”. At the same time, she recognised “a use to revisiting that experience” when it can contribute to systemic improvement. 

That tension between visibility and vulnerability is important, and the one which sits at the heart of lived experience engagement. The value of lived experience in policymaking lies in its ability to make visible what needs to change, but doing so can require people to revisit deeply personal experiences. Any resulting engagement process should therefore recognise the tension between the value of lived experience evidence and the personal costs that can accompany its contribution. 

Towards meaningful participation, not simply more participation

The second lesson is that meaningful participation cannot be measured simply by the number of people consulted or consultations completed. 

As lived experience has become more firmly embedded within policy making, there is a risk that participation becomes transactional. People may be asked to revisit difficult experiences repeatedly, without knowing how their contribution has influenced decisions or whether they will continue to have relevance beyond a particular consultation. 

Rebecca emphasised the importance of feeling able to share experiences “in a safe space and with informed consent”. She also reflected on the skill involved in listening to experiences, recording them accurately and distilling them into the core issues that go on to inform recommendations and policy. That includes some of the less visible aspects of participation. Paying people for their time, ensuring communication and formats meet their preferences and respecting requests to step back can all shape whether involvement feels meaningful. 

This also raises a question about how those involved in the policy-making process use the evidence they already have. Our work on the Maternity Care Standards did not rely solely on new engagement. It built on existing lived experience evidence, including our prior research ‘Trauma, Abandonment and Isolation’, allowing experiences people had already generously shared to continue informing policy. 

There is value in extending the life of people’s contributions in this way. It can reduce the expectation that people should repeatedly retell difficult experiences, while recognising that previously shared evidence can remain relevant as policy develops. 

The challenge now is implementation 

The final, and perhaps most pertinent, lesson is that influencing policy is only part of the journey. 

The publication of Scotland’s Maternity Care Standards is an important milestone, but the process of bringing lived experience into policy does not end when a document is published. The next challenge is ensuring that those experiences inform implementation, accountability, evaluation and improvement. 

That challenge becomes even more important when further considering the tension between visibility and vulnerability. Making experiences visible within policy can leave people feeling exposed, particularly when those experiences relate to pregnancy, birth, loss and maternity care. Rebecca recounted this tension as a “discomfort” but one which “is healthy, and constructive”.  

As Rebecca outlines, that discomfort has value when it keeps policy grounded in the realities it aims to change. But for it to become constructive, it must be matched by implementation. If people’s experiences have helped shape national standards and procedures, the real measure of success is whether those changes are felt in practice, especially when the Standards represent “a deliberate acknowledgement of what doesn’t work, and what needs to change” as Rebecca outlined. 

The progress reflected in Scotland’s Maternity Care Standards shows what is possible when people’s experiences are treated as expertise rather than anecdote. It also points towards some of the questions, and lessons, which will matter over the next twenty years:  

• How can lived experience remain part of policy beyond the consultation?  

• How can people’s contributions be used responsibly, without continually asking them to revisit difficult experiences?  

• And how can their experiences continue to shape accountability when policies move from paper into practice? 

For the ALLIANCE, the lesson is not simply that people should have more opportunities to tell their stories; it is that lived experience must retain meaning and influence beyond the formal moments of consultation and policymaking, shaping the ongoing practice of policy-doing. 

The real measure of success will therefore not be whether lived experience informs the creation of standards, but whether people can feel the difference those standards make in their everyday lives. 

*Names have been changed and pseudonyms used to protect participants’ privacy. 

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