Is it time Lived Experience Professionals set up their own union?

Illustration of a figure holding their head in their hands with the words "we face discrimination stigma career-blocking gaslighting"

This piece follows on from Mick McKeown’s blog, ‘Unionisation options for lived experience workers‘.

There’s question I keep getting asked by people who work in jobs where using Lived Experience is essential to their role. The question is this:

‘Is there any way we can set up our own Union?’

For as long as we – members of the Mad community – have worked within organisations where we have used our Lived experiences of being Mad and using mental health services, we have experienced sanism[1] – an insidious, unspoken, invisible form of discrimination that is directed at people who have mental health diagnoses, adverse mental health, use mental health services. This is a very loose definition, but one that I am using to describe a term first coined by American civil rights lawyer Morton Birnbaum in 1965[2], inspired by fellow lawyer and activist Florence Kennedy who used an intersectional approach to her work. It has been a real term since then, yet it’s not widely known. We often struggle to express the issues we face at work but have no language for what we start to notice we are experiencing them. For me, this term was a lightbulb moment that helped me to name the bigotry I experienced. But how does that word help us and relate to unions?

We need to better understand our history and what is going on inside to understand the hoops we need to overcome to fill this need for true protection, which is more complex than just joining a union.

Work delivered using insight from our experiences of mental health and services started as something developed within our own communities[3]. As it has grown, some organisations have begun to employ us directly. The original principles have become diluted and appropriated towards the organisations that employ us, train us, manage us, give us (or don’t give us) discipline specific supervision, coaching, mentoring, CPD or career development and progression. These roles may be zero hours or fixed term contracts. We may be bought in as self employed consultants, but rarely paid at the rate that consultancy or training that non Lived Experience Professionals work at. Our work is no less than our colleagues. Just like them, we have a wide range of people with incredible skillsets and knowledge. We have professors, academics, researchers, organisational development consultants, cultural change agents, service development consultants, facilitators, trainers, peer support workers, supervisors, lecturers… the list goes on and on, and could become longer if we were allowed to evolve and work effectively with our colleagues.

There is usually an initial honeymoon period when new staff begin to work in Lived Experience roles. Research conducted describes new peer support workers and recovery college workers feeling happy and fulfilled as they start their journey in a new discipline, some never having been employed before. However, we start to notice that the organisations that employ us do so at the lowest wage rates, we are treated differently, our professional advice is ignored in favour of colleagues sometimes less qualified and experienced than we are within the specialisms we work in. Oof. Can our local rep help with that?

This is where research does not capture dissatisfaction, or the worst impacts of sanism, when we become jaded and leave our employed posts – the loss of valuable knowledge to the organisation and more importantly the pain of rejection, precious wasted time and loss of health to us. The Lived Experience led organisations we work for lose funding[4] because they are viewed as ‘less than’ large charities or organisations which are not led by people in Lived Experience specific posts. The people we think have ‘made it’ – those Professors, PhD Academics, Directors? They face sanism too. They are treated as ‘less than’. They do not get the same career opportunities as their colleagues[5]. By choosing to be ‘Mad Academics’, they have chosen to limit their options in support of a cause they can often only change a fraction by working from the inside. They face sanism from both their colleagues and even fellow activists[6] when their workplaces compromise the integrity of the work they have done, which nobody externally can see.

The people who manage to get to the top are often white, male, cis. This is of note because our service user population is diverse, and we barely see people in entry level posts who are not from a white background. Why is this? Premila Trivedi, a scientist by background and lived experience researcher and activist put it plainly: if Black people are treated badly in services, why the hell would they want to come and ‘give back’ or help them improve[7]. Enough already. The tragedy is that the talented Premila herself has stepped back, tired of the crap we put up with. Would a union have helped? Bear with me, I’m getting to that.

Our colleagues in mental health have a plethora of mixed feelings towards us. We are change agents, bold enough to go into work places with a sign on our head that tells all we are Mad and have used services, in some cases, that we have received some of the most stigmatising diagnoses. People join disciplines they are drawn to for a reason. There are estimates that up to 75% of staff in mental health services have their own mental health conditions, have used services, have friends or family that have. They are forced to hide this because their colleagues will stigmatise them. Judge them. Pathologise their work. Do unions help them? I’ll wrap that one up in a bit.

Then up we rock. Doing jobs, as they may see, just because we are mad. Like them. But they are forced to hide it, and have qualifications & training in other models to boot. Some want to cheer us on because secretly they hate the system. Others hate us because we are open in a system that hates difference and where they have to stay closeted due to the sanism in the systems. They do not realise our jobs: to help dismantle that system, to work towards confronting the self-hate people feel in their jobs and the ‘us and them’ caste system between service user and staff member that would never be acceptable in physical health. Current models of care are written using an often Western, cis, male lens that separates the staff member from the humanity and shared experience that can for some service users be therapeutic and what is needed to manage in a world of difference. In research we often approach this by questioning research methods and how data is collected, in organisational, service developments I like to use an all systems approach from an experiential lens. I literally use my body to do this at times when doing observational work. This work is different, and our colleagues do not understand how or why or care to hear. Would a union help us to get this message out? Give us a voice? I’m getting there.

Our unifying theme, across all posts, is challenging sanism. We challenge it in whatever area of an organisation we work in just by being visible. We challenge our colleagues to treat us equally and there is great strength in allowing that vulnerability to be seen in a sanist system.

To do this work we need adequate protection, discipline specific supervision, management and CPD. We need this as a blanket workforce, not matter where we work or what we do. I would say we need equity with our colleagues, but we need better than that. Our colleagues are getting screwed by a sanist system too. We all deserve better.

The simple answer is yes, we need the protections offered by a union. Ideally a Lived Experience Professionals union covering everyone would be amazing. But there are so many regulations, rules and red tape attached to unions. I attended the Unison Health Conference last year and was proud to speak to the motion made to support the Lived Experience workforce[8].  However, the many rules – who was and wasn’t allowed on the conference floor and when, who could vote and couldn’t, the politics, time limits that almost squashed out our motion being heard – these things are all complex. The red tape around striking, how ballots are allowed to be done, making things as inaccessible as possible thanks to Margaret Thatcher and the rights and powers she took away to decimate the effectiveness the unions. These are part of the deterrents for our tired, aching, jaded, exhausted, struggling workforce to navigate to set up. Could it be done? The better answer may be to ask how can we most effectively meet the need we have.

We are fragmented across disciplines which means that we all become fragmented across unions. We become tiny fish in big ponds within unions (i.e. Unison’s Health sector) which then moves into the sea of other public sector workers within the union. Our academic colleagues may join unions such as UCU, our third sector staff may join Unison, Unite or Community, our many self-employed consultants and freelancers now have the option of joining Community. We all exist in the same unions that our colleagues are members of, the same colleagues who outweigh us in numbers, membership, conflicts of needs and politics. What happens when they feel we are being used as cheap options to replace nurses and support workers? Or become frivolous, unqualified, ‘woke’ members of NHS executive boards, as splashed across the Daily Mail[9], no doubt alerted by a disgruntled staff member? The hate and bile in the comments section alone is enough to give you an idea.

One thing all of us who are in unions and have needed help specific to Lived Experience working will know is that the support is not adequate, even with the most experienced and knowledgeable representative we aren’t protected because first of all it is extremely hard trying to identify, communicate and name something that is so normalised it is considered good behaviour, secondly the safeguards once we have started to learn how to see and name them do not support challenging them. A union rep at your side may be one thing for a meeting or complaint, but what about when that complaint becomes a tribunal, when the tribunal becomes an appeal, an appeal of the appeal? What about the support needed to write the form to the union solicitors, who only take on cases that are 90% likely to win? Sanism seeps everywhere into our society, including the law. Discrimination is the hardest case to win. Sanism, a word people have never heard of or even know exists? Good luck.

But still, definitely join a union. They can be worth their weight in gold for the support you do get. Be active in your union. Go to members meetings. Volunteer to go to conferences, speak to motions, if you have a chance to be trained as a rep, or any other training, go for it. We need you. We need more of us to be active in unions and to make a noise for our rights but also learn about the rights we have. Remember all of those colleagues we work with? Being a union rep, using your lived experience lens, is an opportunity to cross fertilise that tolerance, work towards stamping out the sanism as you work with the many burnt out colleagues who dare not say to their employers or colleagues that they are on the knife edge of a breakdown and receiving services. That is working from the inside, and getting the knowledge we can use externally to help our own community.

This brings me back to unions: are they enough to meet our needs? No. Right now, no, they are not. We are fragmented across many unions and our power and knowledge of how to help each other mirrors this fragmentation.

The answer lies in and/as well. Mick McKeown, the first blogger in this double bill, described beautifully what unions are and do, as well as the motion that we both worked on alongside the Nursing & Midwifery Occupational Group[10]. We intend to work on this, and I’d strongly encourage those of you working in the public sector to join so that we can work on this together. However, Mick has also co-authored a paper on worker union co-operatives[11]. These are much more democratic, with members having a larger ability to vote and decide on how these are run. They also seem to have less barriers to set up and can be affiliated with a union.

Maybe a mix of a union co-operative would work, ensuring that our knowledge and power in tackling discrimination is shared and grown. We can more easily lobby Parliament for equity in legislation, challenge employers inequality in pay and career progression. We can address sanism through education of ourselves and our employers. We can support each other.

How? Do we have the passion to do this, are we too battered by the system, can we get the needed start-up funds? Is there an organisation who is already in place, or would we have to create a new one?

I’ve always wondered about NSUN, and our membership. Could we start a model that works something along these lines? The networks are there. But maybe this is not what NSUN feels it is built for. Maybe something needs to be created?

The thing is, I am not the person to decide. We need to get together and discuss this. There is a hunger for a solution. Those of us who want to make it happen could start the conversations rolling. There will be other options that people will have, but we need to try and decide: how do we works towards fulfilling the need?

How do we protect ourselves, have the support and legal advice needed to tackle sanism at work? The answer is in every person who asks the question.

[1] Exclusionary Sanism: A Critical Dialogue

[2] Birnbaum M: The right to treatment: some comments on its development, in Medical, Moral, and Legal Issues in Mental Health Care. Edited by Ayd FJ Jr. Baltimore: Williams & Wilkins Company, 1974, pp 97–141

[3] Costa, L., Walter, L., Aird, A. (2022) The Politics of Service User Labour. (The Empowerment Council: Toronto.)

[4] Beresford,P. (Mon 14 Jan 2019) Austerity is denying patients and care service users a voice, The Guardian, Accessed 6/4/23

[5] Diana Rose, Sarah Carr & Peter Beresford (2018) ‘Widening cross-disciplinary research for mental health’: what is missing from the Research Councils UK mental health agenda?, Disability & Society, 33:3, 476-481,DOI: 10.1080/09687599.2018.1423907

[6] Sarah Carr (2019) ‘I am not your nutter’: a personal reflection on commodification and comradeship in service user and survivor research, Disability & Society, 34:7-8, 1140-1153, DOI: 10.1080/09687599.2019.1608424

[7] Trivedi, P. (2010). A Recovery Approach in Mental Health Services: Transformation, Tokenism or Tyranny?


[9] Ely, J (2022) ‘’Want £115,000-a-year? Apply for the latest woke NHS role: Fury over advert for a ‘director of lived experience’ who is able to create ‘brave spaces’ for staff and patients” UPDATED: 15:53, 16 December 2022, accessed 6 April 2022

[10] Motion: Recognition and reward for Peer/Lived Experience workers: Carried, 2022 Health Care Service Group Conference 12 December 2021

[11] Bird, A., Birchall, A., Mangan, A., McKeown, M., Ross, C. & Taylor, S. (2022). The problem of social care: A co-operative solution. Journal of Co-operative Studies, 55(2), 35-42.