Leadership in lived experience – Can you put a price on the value of adversity?  

On the 10th of December Midlands Partnership NHS Foundation Trust published a call for applicants to apply for its first NHS Trust Director level lived experience role. An outpouring of opinion has since been published by tabloid heavy hitters and online think tanks, with The Mail leading with the headline title “Want £115,000 a year? Apply for the latest Woke NHS role”.  Sir John Hayes, the chairman of the ‘Common-Sense Group’ of 60 Tory MPs, said taxpayer cash should not be funding “lifestyle jobs” across the public sector. “All experience is lived, apart from the experience of death,” he told The Telegraph (2022). And perhaps he has hit the nail on the head with this statement. Is this about outrage for what is only understood by those who have been disadvantaged by or understand the problem?

Recovery in action

A person with a lived experience is someone who has had difficulties in maintaining their mental health because of experiencing symptoms of a mental health condition or disorder or psychosocial disability, however mild or severe, and requires/d some form of mental health intervention (Global Mental Health Peer network, 2018). In short, there is a difference between a lived and a learned experience.  And a requirement of lived experience-specific roles is usually the experience of accessing support or services that the professional is applying their systems knowledge. 

A peer can call on their lived experiences, usually of mental distress but also of other adverse life-altering events such as bereavement or enduring physical illness to influence the support they provide and the lens they adopt when looking for reforms in our health and social care systems. Those in peer forward-facing roles or other lived experience roles walk alongside those they encounter at work as an example of recovery in action. Peers can ascribe to a national competency framework (Health Education England, 2021) and although this is not mandated, it offers guidance and accountability in an emerging area of practice.

Those entering a non-lived experience or peer workforce would normally be employed for their academic or professional credentials, with employers defining clear categories for recruitment. Lived experience work is less definable, and those without a clear understanding of what qualifies as relevant lived experience could naturally lead to questions being asked that can damage the perceived value society places on lived experience roles.

The new generation of lived experience leaders

The value of lived experience is far from new thinking, with the foundations of peer support being observed in psychiatric care in late 18th-century France. The governor of Bicêtre Hospital in Paris, Jean Baptiste Pussin, recognized the value of employing recovered patients as hospital staff. The chief physician at the hospital praised these peer staff for being “gentle, honest, and humane”, “averse from active cruelty”, and “disposed to kindness”. Hiring former patients marked a shift in the philosophy of mental health care that ushered in the “moral treatment” era (Davidson, 2012).

In 2021 The National Institute for Clinical Excellence released guidelines around shared decision-making, recommending the appointment of patient directors from a healthcare service user background to work with senior leaders and be responsible for raising the profile of the service user voice in planning, implementing and monitoring shared decision making – especially from those in under-served populations. As well as supporting the embedding of shared decision-making at the highest level of the organisation (NICE, 2021). This guidance validated the next steps for lived experience professionals and sets the bar high for organisations to bolster their culture, support systems and policy to welcome a new generation of lived experience leaders to walk alongside both lived and learned colleagues; modelling a rationally vulnerable and authentically compassionate approach to leadership.

“You have to go where the energy is and be opportunistic”

Before the suggestions of NICE (2021) the ability to shape services has often been limited to tokenistic ‘engagement’ and ‘representation’ opportunities. Creating paid roles and career pathways for lived experience at every level of the system can transform services for the better. However, Peer and lived experience roles can be isolating and lonely for the postholder who is often working on maintaining their levels of wellness at the same time as defining themselves as a legitimate professional. With a limited understanding of the scope of their role by wider society, we can only lead to assume that this level of misunderstanding may be seen in at least some of the organisations employing peers and lived experience workers. There is much scope for Management and Leadership training to understand how to support colleagues with lived experience, without infantilizing or outsourcing systems of support. The UK’s first Lived experience director of Surry NHS Foundation Trust David Gilbert reflected on his time in the post from 2015 – 2021 stating “You have to go where the energy is and be opportunistic. The emotional labor is underestimated, and it can be lonely. You need support” (Gilbert, 2019).

Thriving, not just surviving

The all-encompassing objective of lived experience involvement is development and leadership and to create communities in which people with lived experience are able not only to survive but rather thrive (Sarkor and Sunkel, 2022). This statement is supported by the formation of Senior Leadership roles for those with lived experiences such as that seen in Midlands NHS FT and other progressive areas. Emerging thoughts for creating career pathways to graduate into leadership are part of the recognised aspirations of the NHS Long Term Plan to model a dedicated lived experience workforce (NHS Long Term Plan, 2019). The plan outlines the value of Lived experience and Peers not only in the NHS but across all Health and Social Care workforce, with recommendations for the VCSE sector to call on their areas of non-clinical expertise to grow and develop those with lived experience. It outlines that by providing non-clinical professionals with lived experience as group facilitators, peer trainers, systems navigators and support workers there can be benefits to, perinatal mental health; mental health crisis care; problem gambling; rough sleeping; and children and young people’s mental health services. The implementation details the benefits of peers at a governance level and in places of strategic influence such as delivery boards, although there are notably less defined plans currently offering a guide to how this may look across the VCSE sectors.

Living alongside their adversity while leading

The value of meaningful occupation and purpose is widely understood as a positive by most people, but the areas that show less credence are the demonstratable benefit to organisations that employing lived experience can bring.

Lived experience posts bridge the gap between those accessing and those providing support or leadership. It creates an opportunity for new learning in colleges.  Those employed in leadership positions can shape settings to be reflective of the true need of those accessing, making more effective systems and services (CFE Research and The University of Sheffield, 2021).

Seeing the potential in Lived Experience Leaders requires other leaders to recognise the value in those that are living alongside their adversity while leading. in positions equal to theirs.  Looking beyond how they may have entered employment or education and scoping opportunities for those from diverse personal backgrounds to gain their place at the table.

Is lived experience only visible when looking down, and not up?

Focusing specifically of mental health and those looking to innovate in leading mental health organisations. Those who face enduring mental health difficulties are more likely to face multiple disadvantages. From lessened life expectancy to poorer educational outcomes (WHO, 2022). Treatment can also come with factors that can affect employment direction, with medications or therapeutic support requiring navigation by employers to allow for workplaces to be inclusive and accessible (University of Sheffield, 2021). Seeing people with lived experience in senior positions is important for those earlier on in their journey to see what can be possible, but also witness how much value their organisations place on their contributions. Visibility is key when looking for integration and reform, if employees cannot see diversity in experiences, views and backgrounds being modelled across the board it can give the message that lived experience is only visible when looking down, and not up.   

While progressive employers are changing the narrative of HR and employment criteria and now welcome lived experiences by applicants, are these organisations holding full consideration to the price that peers pay to deploy their skills – and are our employers giving reciprocal remuneration to the lived experience workforce? As we can see from the controversy that Midlands NHS FT has faced in the recruitment of a post commanding £150K for a lived experience leader at the highest level of their profession, we can also witness the recent NHS Nurse’s strikes being used as justification for advocating for the reallocation of these funds into frontline clinical posts. This is nothing shy of an attempt to whitewash the potential cost savings that wise and informed lived experience leadership decision making could bring to the Trust and other areas that choose to adopt a forward-thinking approach to Lived Experience in Leadership.

While such progressive and important posts are being filled, there is still much groundwork to form a universal understanding of why lived experience needs the chance to step up to the next level and away from the perception that lived experience has fixed points of entry. Our Peer support or voluntary workers are now looking at the glass ceiling and wondering where we go next. By Midlands NHS FT and other areas taking similar steps to lead by example and employ those who have felt the impact of adversity, we are leading with the message of hope for others that are now access support services, but in future could be leading them. 



Founder – Lived Experience Advisory Directory


The Telegraph, (2022) ‘NHS hires lived experience’. Available at: https://www.telegraph.co.uk/news/2022/12/16/nhs-hires-army-lived-experience-tsars-115000-year/. Accessed: 17th December 2022.

David Gilbert, (2019) ‘What about the patient?’. Available at:  https://www.hsj.co.uk/patient-safety/what-about-the-patient-david-gilbert/7025726.article. Accessed: 17th December 2022

NICE, (2021), ‘Shared decision making’. Available at: https://www.nice.org.uk/guidance/ng197/resources/shared-decision-making-pdf-66142087186885. Accessed 17th December 2022.

Global Mental Health Peer Network, (2022) , ‘Peer Charter’. Available at: https://www.gmhpn.org/uploads/1/2/0/2/120276896/gmhpn_charter.pdf. Accessed: 17th December 2022.

Sunkel, C. and Sartor, C, (2022). ‘Perspectives: involving persons with lived experience of mental health conditions in service delivery, Development and Leadership’, BJPsych Bulletin46(3), pp.160-164.

Health Education England, (2021), ‘National Peer Competency Framework’. Available at: https://www.hee.nhs.uk/sites/default/files/documents/The%20Competence%20Framework%20for%20MH%20PSWs%20-%20Part%202%20-%20Full%20listing%20of%20the%20competences.pdf. Accessed 17th December 2022.

Davidson L, Miller, R, (2012), ‘Peer support among persons with severe mental illnesses: a review of evidence and experience’, World Psychiatry;11:123-128. Accessed 17th December 2022.

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