Lived experience

Our Stance

There is no doubt that great effort, energy and care have been put into creating health and care services that can support us when we need it. However, often decisions about health and care are made without meaningfully listening to the people who use and need services the most. This is particularly the case for people that experience health inequalities, such as people from minority racial and ethnic groups, inclusion health groups, people experiencing socioeconomic inequality and many others.

As a result, services are often designed without considering how decisions will impact upon people’s experience. In some cases, this means services exclude some groups of people whose access needs have not been met. Just one example of this is that people waiting for treatment are being offered care more quickly if they can travel further from home. Without the right additional support in place this policy actively disadvantages people who cannot financially afford to make a longer journey or, for example, have caring responsibilities that prevent them from doing so.  

In other cases, poor service design can make people’s lives more stressful during an already challenging time and can also have a significant impact on the ability of the NHS and social care systems to cope with growing and more complex demand.

Our Work

At National Voices, our ambition is to support and embed meaningful collaboration between diverse groups of people with lived experience and decision-makers, to inform better service design. 

We work to ensure people can influence and shape their own health and care and that co production meaningfully engages people with lived experience to ensure new policies are inclusive and effective, and to reduce poor health outcomes. 

Our vision of people shaping their own health and care is a thread that runs through all of our work as an organisation. For example, our influencing work on accessible and inclusive communications within primary care, on supporting emotional health among people living with long-term conditions and our insights work on priorities for the NHS on its 75th birthday. 

We have invested in developing a growing community of Lived Experience Partners who work alongside us to embed strategic co-production across our work, and who we support and deploy to work alongside senior decision makers in health and care.

In recent years, we have also developed Voices for Improvement – our prototype coaching and mentoring programme for senior leaders in health and care interested in strengthening their strategic co-production skills. We work with organisations to help them understand how to engage with communities and the cultural and operational shifts that may be needed to embed this change in focus.  

In May 2022, we launched our report Valuing Lived Experience: National Voices’ learning about embedding strategic co-production which brings together the key lessons and reflections we have about embedding strategic co-production in our organisation.  

Our Asks

1. Listen first: No new policy, service design or implementation plan by the Department of Health and Social Care, NHS England or within Integrated Care Systems should be developed without including diverse groups of people with lived experience who will be directly impacted.
2. Communicate: Communities and people with lived experience should be at the centre of co-designing care from the very outset. Decide together how people can best contribute to consultation, engagement and participation. Pay particular attention to groups and individuals who require reasonable adjustments so they are included and are not overlooked and ignored.
3. Move to action: To build and maintain trust, it is essential that information and insights are acted on. This is especially important when there are complex trade-offs to negotiate. In our experience people prefer honesty and transparency to silence.
4. Investing: To gain value for people and the services they receive invest in those closest to the issues to build their capacity and capability to work to the principles and practice of co-production. Co-production harnesses collective insight and resources held in the voluntary, community and social enterprise sector that will lead to better design. It reduces the risk of rework and wasted resources.
5. People not targets: Measure and monitor what matters to people. It is important to collect enough data using measures everyone can understand to track what works well and what is not working for people receiving and providing services every day. Reduce the burden of data collection for everyone and share what the data shows and how it informs decisions.
6. Experts: It’s my life. People live with their conditions 365 days a year and not just when they encounter the health and care system. We invite frontline professionals to work with people who are experts in their own lives especially those with long term conditions and in situations that are different and less straightforward. One size does not fit all.

Work with us

If this is a topic that is of interest to you and you would like to explore how we might contribute our insights and expertise to your work, we would love to hear from you. We offer consultancy and can design focus groups, roundtables, coaching and workshops to organisations who share our vision for more person-centred and equitable health and care. You can find our more here.

This page was last reviewed in December 2023.