Are you a Lived Experience Professional (LXP) who has ever been asked to explain the difference between what you do, vs. Public & Patient Involvement (PPI) staff? It’s a toughie, because on the face of it, the work often looks the same.
The main difference between the two is People working within the Lived Experience Professions (ie research, peer work, consultancy, etc) have ‘Lived experience of a mental health condition/using services’ (as relevant to the post). The work they do is required to be done using the insight from this lens. This does not mean telling their story to an audience of staff or service users, rather, it could be used to inform interactions between service users and staff, service design, pathways of care.
This blog goes into further detail as to what differences there are, and gives papers at the end that you can use to support any conversations you are having with people at work about employing senior LXP staff vs. creating more generic PPI positions.
The most powerful thing of all is what LXP working does inside an organisation. Mental Health services are notoriously stigmatised towards staff with mental health conditions. Think about it. Does your CPN really want her colleagues knowing she is bipolar? Does your psychiatrist really want his team knowing that he is schizophrenic? That cold your Care Co-ordinator has told her manager she has – the one that is really work based stress?
LXPs are staff who walk about with those diagnoses on their head. They challenge the status quo. They are brave enough to be open with what others feel is a weakness. By this very action, they are change agents, promoting change within the organisation. They show that it’s ok to work with a mental health condition. They show what can be achieved in periods of good health. What can be done with reasonable adjustments. They challenge the ‘Us & Them’ divide between staff & service users.
Examples of LXPs in NHS settings are usually Peer Support Workers. They are most often than not the most poorly paid people in the organisation. Some organisations pay them on the lowest banding – a Band 2, whereas Domestic, Cleaning and Support Worker staff may be working at a Band 3.
If you speak to LXPs who work within an NHS organisation, you may be surprised to hear how different the experience of being treated as a volunteer to a paid worker is. Teams and staff that once smiled and were kind as audience members to recounting a story become more hostile within Multi Disciplinary Meetings (MDT) or when they suggest a different approach to working with a service user. LXPs are looked at differently, treated differently to other staff members. In some areas the turnover of LXP staff is very high. The sickness rates are high. When you speak to individuals, it is not the work that makes them sick. It is the way they are treated at work. Some are very badly hurt. Some are hospitalised. Careers are often non-existant, with people finding it impossible to get beyond entry level roles if they want to continue working.
It is very rare for areas to have senior LXP staff who manage LXP staff. Ones that do, such as Central North West London Trust, have an entire division of 80 LXP staff, employed across hierarchies and job roles. This is a case study of LXP working that has been adequately supported for both LXP and existing staff, allowing integration and culture change.
Most Public and Patient Involvement Staff do not have ‘Lived Experience’ as an essential criteria of their job role, and they are not required to work from this lens. Many do have lived experience of a mental health condition, many use these within their jobs. However, it is not an essential part of the role and because of this roles are essentially involvement, research, management. It is also not a protected part of the role, so if anyone were to protest an LXP approach it could not be watered down to fit a less service user focussed approach, such as approaching a team with a purely management focus, with the rest stripped out.
The other essential differences are that without the ‘LXP’ within the job description, people working in PPI roles never have to face the same discrimination that a Peer Support Worker, LXP Trainer or LXP Researcher will face. Until a person works in and experiences this type of discrimination, it is hard to describe, or at first, believe once the brain allows identification of this.
People in PPI roles often manage people in LXP roles. There is a power imbalance, and in order for an LXP to progress, they, she or he needs to forsake experiential working and move over into PPI working instead.
This tension between PPI and LXP working isn’t new. It’s become more of a conversation in NHS and healthcare settings since the NHS started to employ Peer Support Workers. However, this argument has been going for a much longer time in research, with literature – both grey and peer reviewed – in existence.
If you need to argue the toss with your local NHS trust over the difference between PPI and LXPs, here are a few excellent articles written by some heavyweights in the world of LXP working:
What LXP working is: Professor Diana Rose explains the difference between having lived experience and working from this lens in very simple terms here ‘it is not an additive thing, it is a synergistic thing’: https://www.youtube.com/watch?v=pWHm1nPK-Mo
How much ‘lived experience’ is enough?: Dr. Louise Byrne – ‘Understanding mental health lived experience work from a management perspective How much ‘lived experience’ is enough?’ https://pubmed.ncbi.nlm.nih.gov/32753099/
PPI vs SUI: Prof. Peter Beresford explains the difference: https://pubmed.ncbi.nlm.nih.gov/32753099/
Discrimination: Many LXPs, particularly in the research field, have written about the discrimination and damage to their careers because they worked as LXPs rather than from a PPI lens. One paper on this subject of PPI funding ensuring SU led researchers – even our professors – do not get funding is here: https://www.tandfonline.com/doi/full/10.1080/09687599.2018.1423907
Not Letting LXPs Lead their Own Work: National Survivor User Network were invited to join a steering group for Health Education England’s new framework for peer working, but declined after discovering that this was not led by peer workers. Tamar Jeynes wrote a response article for the NSUN’s site here: https://www.nsun.org.uk/news/response-to-the-competence-framework/
The Emotional Labour of LXP Working:
Alison Faulkner – Emotional Labour of this type of work: https://www.tandfonline.com/doi/full/10.1080/09687599.2021.1930519
Dr. Sarah Carr writes about working within Academia as an LXP Researcher, between service user volunteers and non-LXP staff, both of whom viewed her with suspicion, in the brilliantly titled ‘I am Not Your Nutter’: https://www.tandfonline.com/doi/abs/10.1080/09687599.2019.1608424
The Cost to LXPs
There is, of course, a cost to not letting LXPs lead their own work. The wider cost has been written about in the Guardian by Peter Beresford. He describes the loss of contracts given to survivor led organisations, leading to many of these folding during Austerity. While an article from 2019 about the wider survivor landscape may seem a bit removed from LXP working, think about it this way: where did the Lived Experience Professions evolve from? Who originally demanded change, and organised for things to be different? NHS and larger organisations tend to stop employing LXPs beyond entry level. To go beyond that without monumentally fucking up, they need to employ LXP consultants who already work at & have knowledge of the post at that level to guide the process. The people who know what it is really going to be like working from the inside, sandwiched in the middle of two groups, how to support entry level staff and build career structures and equity that will benefit not just themselves, but make working in the organisation a better place and receiving services a better experience. The very act of employing an LXP consultant to aid with this process in itself demonstrates the equity in attitude that is needed to do this effectively. Peter’s article shows why we need to understand the difference between what is Service User Led, and what has been funded for Patient Involvement – but without monies being given to organisations or projects that are. Most organisations who do Patient Involvement work do not employ LXP roles in senior decision making posts. While this happens, LXPs & SU led organisations will continue to loose financial, career, job/contract opportunities. You can read Peter’s article here: https://www.theguardian.com/society/2019/jan/14/austerity-denying-patients-care-service-users-voice
In case you are wondering what you can do as a lone voice, you can do a lot. You can know the difference between LXP and PPI working and let others know too. You can use the articles to argue the point with your PPI Lead. Maybe they don’t take much notice of a perceived low banded worker. But citing an article by Professor X or Doctor Y who actually work in and are experts in the discipline to back your argument equals the power divide a little. Reading the articles, you will realise that you are not a lone voice – there are others too. If you feel so empowered, you can write a blog about any of your experiences, comments or reflections as an LXP – we are happy to publish your work anonymously if that’s what you need.