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The LXP Revolution

The Revolution isn’t new. It’s just been invisible – like us. They haven’t seen us, and we haven’t seen each other – but we’ve been there.

For as long as we have existed, people who have worked within the Lived Experience Professions have reported examples of exploitation. Labour had been unpaid, poorly paid and emotional labour has regularly been abused. The most frightening thing is that these examples happen in plain sight, but are not seen. When individuals report these issues, they are often alone and do not have access to support from other LXPs, people who can validate their experiences and explain this phenomenon to them. Well-meaning (or not so well-meaning) colleagues may think they are offering support through attempts at telling LXPs that issues they are raising are based on their own perception, or that these issues do not exist.

The Revolution has been the times where we have met other LXPs, shared our stories, learnt that we are not alone. The Revolution has been the times we have supported each other to carry on. The Revolution has been whenever we have reminded each other or ourselves of what LXPs do, and disentangled that from it becoming entangled into a generic organisational post that bears no relation to the heart and soul of what we do. The Revolution is when we are challenging something in a world where we are alone.

The most powerful thing we have in this Revolution is sharing our support, knowledge experiences and validating what is happening to us.

First Ever Union Motion to Support LXP Workers Passed!!!

Correspondence by Tamar Jeynes, Unison Health Conference Delegate (2022)

The first ever motion by a union to supporting Lived Experience Professional (LXP) workers was proposed and unanimously voted in by members of Unison at its annual Health Conference last week.

People who work in Lived Experience Mental Health posts have been expressing disappointment at a lack of understanding and support from unions regarding the work they do and the unique discrimination and stigma that it attracts. The experiences LXPs have with Unions in general is spoken of with disappointment and frustration, with most people accepting this as the status quo. While several have favoured the option of a union specifically for LXPs, the reality of legislative compliance, resources, time and funding has been too high a barrier to start. Smaller scale networks have not so far grown or been accepted within the discipline to the level of nationally recognised professional networks that would benefit people in different types of roles to join.

There has been much work and discussion by many giants and quiet but determined people within our movement to make change happen. There still is, hopefully work that can connect together as we all grow. This particular Motion – Motion 19 – was inspired, in part, by a rant on Twitter.

Over a decade of my own experience of discrimination, the bitter conversations of these shared experiences with LXP colleagues, the fight to be heard, the hospitalisation of colleagues, the hospitalisation of me, and finally, the seeming abandonment of my union when I most needed its support, in the form of legal representation I could not otherwise afford. Every ounce of frustration, every eff and jeff and grief laden word underlied the deep feeling of being worth nothing, expendable to the point of death or long term loss of health. Beneath that, there was the sheer terror of facing a court and having the sheer audacity to even question this. If my employers and care providers thought it was ok, if my own union thought it was ok, why on earth would a court think otherwise? Why would I be foolish enough to even think about challenging this?

Was I mad? Were all of my colleagues mad, too? We had certificates diagnosing that. But what if the ‘delusion of discrimination’ was on the part of everyone else other than those of us who actually experienced it? Many of us work in isolation, yet we were experiencing the same issues, across the UK – in fact, this issue is global when reading the small amount of literature that exists on the subject or speaking to colleagues in other countries.

My Twitter friend and colleague Professor Mick McKeown reached out – unknown to me, he happened to be part of Unison’s Nursing and Midwifery Council in his capacity as a senior academic. We spoke at length, I wrote a follow up email with some resources and arranged an informal meeting with NSUN (National Service User Network) in their capacity of having links with many service user led organisations and having worked on national projects.

The main issue with putting together a motion is that no one person can hold the key to the answer as to what the exact issue is and how it is best supported. We need to understand more and also to seek – if possible – a consensus from the wider Lived Experience Professions.

As can be seen below, Motion 19 sought to commit to supporting LXP workers in terms of improving terms and conditions of work, pay, and career progression. It also went further in proposing a scoping exercise to identify what currently exists, geographical/organisational disparities and other issues, ie. discrimination, bullying, lack of access to support or training.

Excitingly, the motion also supported the education of fellow colleagues in what LXPs are, what we do, and the uniques forms of discrimination we face.

The motion, raised by the Nursing and Midwifery Occupational Group called on the Health Service Group Executive to: 

  1. Commit the nursing sector, reporting to the Service Group Executive, to a piece of work to shape Unison’s response to the employment needs of LE workers. This to involve production of guidance for the whole workforce to better support the contribution of LE workers.
  2. Conduct a scoping exercise of the range of LE roles and terms and conditions with a view to building a campaign for improved terms and conditions, job security and career progression for LE workers.
  3. Work with stakeholder organisations to develop the education, training and supervision requirements appropriate for this group
  4. Accomplish these objectives in alliance with appropriate groups, such as the NSUN (National Survivor User Network)

You can read the full motion here:

What does this mean? What happens next?

Before I push ahead on all the possibilities, I want to tell you what I learnt about Unions and why we are invisible, ignored, unsupported.

Unions are huge. Unison is huge. The Health Conference I attended was one of many for the public sector. As LXPs, most of us work within Mental Health. This is just one small aspect of Health. Mental Health battles with various other groups fir a platform to be heard within Health. Now imagine Lived Experience posts within that. It is a big stage and we are like amoeba in the sea.

We did well to get our Motion heard at the conference. There were several that did not get to have their proposed motions accepted. We are very blessed to have had the allyship of Mick McKeown and the wider Nurding and Midwifery Occupational Group. As a discipline we do not have out own group, and therefore rely on others to do this for us. Thank you so much to all of you on the NMOG for doing this.

I found the culture of the conference a slight shock to the system, as it was unlike any I was used to at other health conferences Unions are EXTREMELY rigid, boundaried and there are lots of rules and regulations in comparison. This culture difference may be something that is the difference between the generations, but I suspect there is something about the roots in work where people traditionally had to clock in and out and account to others for their time. I noticed less young people in attendance, maybe this is a little alien. As LXPs, the culture is very different to what some may experience – ideally we work best in reflective environments which are less rigid. As an example: conference attendees are expected to attend all (or one paralell) sessions. Not only are attendees checked into the venue, but they are also checked into each session using the barcode on their badge. If any attendees decide to bunk off for the afternoon, their branch gets sent a stern warning letter. Can you imagine that happening to Consultant Psychiatrists attending international conferences in far flung exotic locations…? 🤣🤣🤣

There are also rules about who is allowed on the conference floor, who is given voting rights, and who can sit where. While some may seem antiquated, it gave me insight into the level of bureaucracy which is needed in terms of voting rights and legislative compliance. I have no idea how much of this is necessary for minimum standards, but it would be a huge weight on top of the emotional labour required to create our own union. Discovering if we can do this effectively with an established union would take some of this burden away. It would also provide Unions like Unison with fresh new faces that think differently, are often activists in their own right already and who have some influence in the niche areas they work in. We also have a range of ages within our demographics.

The other key barrier we face in unions is the fact that even in the health conference, a lot of people approached me and asked what Lived Experience workers were and did. Even the most widely heard of role – peer support worker – was not widely recognised. The biggest job we have to do, my friends, is educating people in the fact that we actually exist. Most people working in general health are poorly educated in mental health, and we know that in mental health, stigma and discrimination is so bad that staff do not feel safe to disclose instances of stress related illness, let alone chronic mental health conditions. Staff in both areas often do not know we exist, if they do, they have a very limited idea of what it is we actually do.

As a direct example, I attended the ‘Race for Equality’ parallel session, where I brought up the ultimate of all hidden discrimination within the mental health workplace: The Black LXP. White LXPs are so badly treated that they end up in hospital, careers blocked, paid insultingly low wages. Black LXPs? The discrimination is so bad that most people just don’t want to go there. As Premila Trivedi said in one of her papers, Black people may be diagnosed Mad but they’re not so Mad they want to willingly come back again to the place where they experienced abuse or bigotry in the first place.

The contribution was very well recieved – it very much resonated with people there. One person came to me and said she had been wondering where all the Black LXPs in her ethnically diverse NHS Trust were. I told her – most of us are White. Those of us who aren’t are the exception to the rule – we miss out a whole range if need in terms of the trauma of racism and its impact on mental health because of it. Other people who approached me agreed with what I was saying but wanted to know what LXPs were.

This situation illustrates perfectly the biggest issue we face – we need to make people aware that we exist, we need to make them aware of the discrimination we face which they will often perpetuate without even realising it.

The last but most poignant thing I wanted to say was about the motion itself. it almost never got heard. The irony if this was the fact that the motions previously contained aspects of racial equality that people were keen to speak to – in the process of allowing more people to be heard, it meant our motion – Motion 19 – couldn’t be. It was in danger of being decided by a committee outside of the conference without being heard. We were fortunate that the conference committee adapted the agenda for the third day, however we were still in danger of not being heard for the same reasons.

When Motion 19 was finally heard, a member of the Nursing & Midwifery Occupational Group put forward the proposal. Three of us spoke in support of it. I was the first to speak, and felt an extreme level of responsibility over what was said in those three minutes. From what I had learnt, most people had no clue as to who we were or why this was important. They would likely vote it in, because – well – why bother opposing it? However, the three minutes now wasn’t just about getting votes. It was about grabbing the attention of fatigued conference attendees, using three minutes to let them know we exist, please see us. I often forget I have rainbow coloured hair and am wearing colours or styles that are considered a tad eclectic. After what I had learnt over the past two days, I connected with the obvious difference and inner warmth of the rainbow unicorn and worked it with every ounce of energy I had to give. So much so I had to go back afterwards and tell them my name as I’d forgotten that one little bit of information.

After me, two other people spoke in support of the motion, Paul Leake from Durham who works with a Commissioning Group spoke about treating us as the professionals we are, and Alison Jones who works in Liason & Diversion in Staffordshire spoke of the invaluable work of Peer workers in her service.

The one frustrating element was that someone got up to ’support’ us, and started by briefly mentioning Peer Support Workers in their NHS Mental Health Trust and how ’they’ need more support than ’normal’ people because of their mental health condition. The true reason for the ’support’ came to light as the person spoke about how frustrated they were that they hadn’t got to speak in support of other motions – this being because these were popular motions with lots of speakers, which were in danger of meaning smaller ones, like Motion 19, would not be heard. The chair told the person to stick to the point of the motion, and yet again they carried on using the time to speak about a different motion, which had already been voted on.

Essentially, time was being taken from an especially disadvantaged group, effectively invisible at the moment, to complain about not having a voice from a well supported, visible motion that had been voted on earlier.

We have a long, long way to go.

In the meantime, I distributed badges, stickers and leaflets. Viva La LXP Revolution!!!

Unison Conference & Motion to support LXPs TOMORROW

Blog by Tamar Jeynes, Unison Health Conference Delegate (2022).

For those of you who don’t know me, I’m a Mad Activist & I founded the Mad Studies Birmingham, which has a Lived Experience Professions focus, 3.5 years ago. The group attracts an intersection, international, wide ranging group of people from various disciplines, non-LXP as well as LXP. I’m here at the Unison Health Conference 2022 as a Delegate to speak for and vote for Motion 19 which will support Reward & Recognition of LXP workers.

Today is the first day of Conference. This is a conference that could make a huge difference to Lived Experience Workers, and the unique discrimination and lack of support that we experience. After a massive rant on Twitter over my own experience (which is a universal one for many of us) Mick McKeown, a Twitter pal who I have done research work with, got in contact. I never realised he was on one of the National Unison groups – the Nursing and Midwifery Occupational Group. I had another emotional rant, on my own situation, but also on the situation that is universal to many of us who are Unison members (or who can’t get much needed Union membership). 

I sent an email afterwards, giving a general description of the range of lived experience work – some exploited and unpaid, involvement work, employees, sessional workers. All across different disciplines. To be honest little is known about us, we are disparate, alone, isolated, badly treated and badly paid. It is hard to band together because of this. 

The motion is crafted to work as a scoping exercise to work with a lived experience led organisation understand how many and who are members are, the issues we face, and the exact levels of exploitation in pay we are facing. Once we have this, we will be able to effectively support members – some of whom have have been moved to suicide attempts or completion due to discrimination they have faced. 

We need support.

The motion also pushes for education of Unison members to better understand the issues that LXP members face, and to improve working relationships, reducing discrimination, stigma and bullying. LXP staff wear their Mental Health diagnosis label on their foreheads, ‘Out’ to colleagues. It is a brave and scary thing to do, and we need support. 

If you are a reading this between 25-27 April 2022, please support this motion and LXPs on Twitter using the hashtag #uhealth22. The motion is tomorrow – Tuesday morning, 26 April – so get Tweeting!!! 

****PLEASE VOTE IF YOU ARE A UNISON DELEGATE AT THE CONFERENCE!!! ****

The Motion is below:

Recognition and reward for Peer/Lived Experience workers 

There is increasing involvement of Peer/Lived Experience (LE) workers within mental health services. These are individuals whose role is framed by making constructive use of personal experience of their own mental health difficulties and vulnerabilities. Such roles exist in a number of different contexts where such use of self is valued as the key element of professional identity, adding a unique contribution to the work of wider teams where they are working openly from an experiential lens. 

Such workers are employed in a variety of settings including NHS, voluntary sector and private mental health services, also in universities responsible for mental health research and practitioner education, and within broader NHS systems such as NHSE and HEE. Indeed, some individuals are operating in unpaid roles. Job titles are varied and reflect the proliferation of roles. Examples include: 

  • Peer support workers 
  • LE Researchers 
  • LE Consultants 
  • LE Educators, Trainers and Facilitators 

LE workers are either already UNISON members or are potential UNISON members. Arguably our union needs to provide a bespoke offer to this particular group of workers to better service their needs and interests. 

From an employment relations perspective there are a number of points of concern with regard to fair terms and conditions, job security and career advancement opportunities. LE workers are concentrated in lower AFC bands, subject to inequities of fixed term contracts or sessional work, and do not typically progress to senior pay bands or managerial positions. The national picture is varied, but it is not necessarily typical that LE workers are managed or receive supervision from more senior LE workers. 

There are also reports of tensions between the wider workforce and LE workers, and services would benefit from support, education and development to improve these relations and more supportively accommodate the contribution of LE workers. It is important that these roles are used appropriately and not as a way of undercutting the skill-mix and terms and conditions of the wider workforce. 

This interface is often between nurses and LE workers. The requirement in these job roles to draw upon one’s own history of mental health problems and disclose shared experiences and vulnerabilities is cumulatively taxing and stressful for this workforce. Appropriate, supportive supervision is an essential requirement to protect workers’ welfare, though this is not always available. 

Conference calls on the Health Service Group Executive to: 

  1. Commit the nursing sector, reporting to the Service Group Executive, to a piece of work to shape Unison’s response to the employment needs of LE workers. This to involve production of guidance for the whole workforce to better support the contribution of LE workers.
  2. Conduct a scoping exercise of the range of LE roles and terms and conditions with a view to building a campaign for improved terms and conditions, job security and career progression for LE workers.
  3. Work with stakeholder organisations to develop the education, training and supervision requirements appropriate for this group
  4. Accomplish these objectives in alliance with appropriate groups, such as the NSUN (National Survivor User Network)

Nursing and Midwifery Occupational Group

You can also see a recording of the Mad Studies session where Mick joined us to discuss the motion below:

Ask Your Local Unison Rep to Vote to to Support LXPs

Unison have their Health Conference scheduled in next week (24-27 April) and the Nursing and Midwifery Occupational Group have proposed a motion to support Lived Experience Professionals of all types within Unison. Unison is a union which represents public sector staff, such as those working in NHS and Education.

We know as LXPs that for a long time we have suffered with a lack of adequate support from whichever unions we may (or may not) be members of, with calls for development of a bespoke union for Lived Experience Workers.

It would help greatly to raise awareness and support of the motion if people who work for employers who have Unison representatives could email or call them to ask them to support the motion being raised at the conference. You can find your local Branch representative by using the link below. You simply type in your employer’s name (it needs to be one covered by Unison, ie an NHS trust) to find your branch secretary’s details.

You can find full details of the motion here:

Last week Professor Mick McKeown who is a member of the Nursing and Midwifery Occupational Group joined the Mad Studies Birmingham group to discuss the motion. You can view the discussion below, once it has been uploaded and added to YouTube, which should happen at some point later today.

Unison to raise an LXP Motion at April Conference

Unison’s Nursing & Midwifery Occupational Group will be putting forward a motion to improve recognition and reward for lived experience workers at the union’s Annual Health Conference 24-27 April.

For a long time Lived Experience workers have been raising issues about inequalities and discrimination at work, expressing dissatisfaction at the support that existing unions provide. The Annual Health Conference provides an opportunity for motions to be put forward for the union to increase its support for members working in the health sector.

The motion is below:

Recognition and reward for Peer/Lived Experience workers 

There is increasing involvement of Peer/Lived Experience (LE) workers within mental health services. These are individuals whose role is framed by making constructive use of personal experience of their own mental health difficulties and vulnerabilities. Such roles exist in a number of different contexts where such use of self is valued as the key element of professional identity, adding a unique contribution to the work of wider teams where they are working openly from an experiential lens. 

Such workers are employed in a variety of settings including NHS, voluntary sector and private mental health services, also in universities responsible for mental health research and practitioner education, and within broader NHS systems such as NHSE and HEE. Indeed, some individuals are operating in unpaid roles. Job titles are varied and reflect the proliferation of roles. Examples include: 

  • Peer support workers 
  • LE Researchers 
  • LE Consultants 
  • LE Educators, Trainers and Facilitators 

LE workers are either already UNISON members or are potential UNISON members. Arguably our union needs to provide a bespoke offer to this particular group of workers to better service their needs and interests. 

From an employment relations perspective there are a number of points of concern with regard to fair terms and conditions, job security and career advancement opportunities. LE workers are concentrated in lower AFC bands, subject to inequities of fixed term contracts or sessional work, and do not typically progress to senior pay bands or managerial positions. The national picture is varied, but it is not necessarily typical that LE workers are managed or receive supervision from more senior LE workers. 

There are also reports of tensions between the wider workforce and LE workers, and services would benefit from support, education and development to improve these relations and more supportively accommodate the contribution of LE workers. It is important that these roles are used appropriately and not as a way of undercutting the skill-mix and terms and conditions of the wider workforce. 

This interface is often between nurses and LE workers. The requirement in these job roles to draw upon one’s own history of mental health problems and disclose shared experiences and vulnerabilities is cumulatively taxing and stressful for this workforce. Appropriate, supportive supervision is an essential requirement to protect workers’ welfare, though this is not always available. 

Conference calls on the Health Service Group Executive to: 

  1. Commit the nursing sector, reporting to the Service Group Executive, to a piece of work to shape Unison’s response to the employment needs of LE workers. This to involve production of guidance for the whole workforce to better support the contribution of LE workers.
  2. Conduct a scoping exercise of the range of LE roles and terms and conditions with a view to building a campaign for improved terms and conditions, job security and career progression for LE workers.
  3. Work with stakeholder organisations to develop the education, training and supervision requirements appropriate for this group
  4. Accomplish these objectives in alliance with appropriate groups, such as the NSUN (National Survivor User Network)

Nursing and Midwifery Occupational Group

If you are interested in joining a conversation about the Unison motion with Nursing & Midwifery Occupational Group member Professor Mick McKeown and Mad Studies Birmingham founder Tamar Jeynes on 14 April, you can book here – the event is free:

Jacqui Dyer: It’s not OK to replace paid LXP staff with Unpaid Service Users 

What is the difference between asking an NHS Trust a question at its AGM vs. asking the same question at the GtiCP Conference? 

Well – for a start: the GtiCP (DCP Group of Trainers in Clinical Psychology) conference didn’t censor the question and actually put it in the chat. Second, they actually asked it. Third, they allowed the speaker to answer the question. But let’s back up just a minute.

Going back a few blogs to the reason why LXP Revolution came into being – local Lived Experience Professions staff had decided that after many years of being discriminated against, a group, anonymised (safe from retaliation) way of bringing awareness to this issue was needed.

The straw in a long line of issues to break the camel’s back was the replacement of Lived Experience Professional trainers paid at £300 a day with unpaid service users. The LXP trainers were part of an NHSE and MoJ nationally funded training, which was not costing the trust anything and worked on a co-produced, power-sharing model with clinical trainers. The in-house replacement was one that had been developed with unpaid service users and relied on unpaid SU facilitators to co-deliver with clinicians.

Aside from the moral and ethical issue, there was no financial sense behind doing doing this, as funding has recently been increased and national support invested. Instead, local LXP trainers found themselves without work, and local service users exploited for doing highly valuable work.

LXP Revolution sent a question to be read out to Birmingham & Solihull Mental Health Foundation Trust’s Comms Team prior to the AGM, and CC’d in the Trust non-clinical Staff Governor: 

PLEASE ENSURE THIS IS READ OUT PUBLICLY AT THE AGM AS WELL AS THE REQUESTED WRITTEN RESPONSE, WE ARE TRYING TO RAISE PUBLIC AWARENESS OF THIS ISSUE FOR SERVICE USER WORKERS. THANK YOU.

Question for inclusion at AGM:

During the last financial year, a coalition of Lived Experience Professionals who work at consultancy level approached the board to ask why people in Lived Experience Professional Trainer roles being paid at £300 a day were being replaced by unpaid service users. The trusts had also rejected the chance to apply for funding for a Band 7 post connected to the same stream of work. We have seen senior level work dismantled and people who work at this level made to feel unwelcome at Recovery meetings where service users in voluntary and entry level posts have been guided by people in non lived-experienced public engagement posts without knowing that existing specialist work has been eradicated, or even existed in the first place. This has led to extreme distress for people who are working in this field, facing losing their jobs, and being hospitalised in the process.

We have already asked you at the Board Meeting but would now like to ask you again at the AGM, why this has happened, and if you intend to make this right with the people who work beyond entry level in the Lived Experience Professions, who have now almost been removed from working within the Trust at this level?

On behalf of LXP Revolution, please provide a written response that we will post on our website at www.lxprevolution.co.uk

We sent the question at 10.28 and the AGM was due to start at 11, with questions towards the end of the meeting. People could add questions on the day and the questions sent ahead of time would be added. Questions not read out on the day we’re supposed to have a response within 48h. The question was not read out. After the meeting, we sent an email to ask why this was:

Hello BSMHFT Comms Team (CQC CC’d in for info)

We are extremely disappointed this question was not asked in the AGM public meeting. Could you let us know why that was? We’d sent it in ahead of time so that you would be able to prioritise it in the queue and asked for it to be read out at the meeting itself. 

FAO CQC: Could we have this added to the complaint that we have lodged with the CQC, reference number: ENQ1-XXXXXXXXX

Best wishes

LXP Revolution 

As part of our activism, we’ve also contacted the CQC about the issues we’ve experienced, so we decided to cc them into the email and add in the reference number to add to the complaint. It may have been worth cc-ing the CQC in on the first email, because we had a fairly swift response this time:

Thank you for your question, however it was received after our 9am deadline for submissions to the AGM.

Please be assured that we will come back to you with a written reply.

Sadly we hadn’t been aware of the deadline until it was too late. However, we do feel that if it was possible to add questions to the chat during the meeting, could this effort not have been made, especially since the non-staff Governor had been cc’d in? Either way, the Trust has never to date shown any respect towards us in terms of acknowledging that this has happened, explaining why, inviting us to be part of deciding how to make this right. Nothing. No accountability.

This lack of accountability has been reflected in the promised response within 48h. For a Trust so fastidious about time, those 48h ran out midday on Friday. So as of writing this today, Monday at noon – we are now 72h past their own deadline. It kind of puts our 90mins (albeit 30mins before the meeting to a mailbox that was being constantly checked at the time) into perspective, hmm?

So let’s go back to the GtiCP (Group of Trainers in Clinical Psychology) Conference. Jacqui Dyer was speaking about Equality in services and staffing within mental health services. Apparently BSMHFT is one of the pilot sites focussing on inequality. After a few jaws were picked up off the floor, we asked about the issues of LXP workers in NHS being discriminated against and how this could be measured, giving BSMHFT’s example of replacing LXP Trainers with unpaid service users.

Jacqui’s response?

“That’s not ok. It shows a lack of understanding of lived experience working. It shows a lack of understanding of career pathways for lived experience workers, goes against recommendations at Health Education England.”

It is sad that whilst it appears that at a funding level – the money – the supposed level of power – we seem to have support – yet this support can so easily be subverted by NHS Trusts that have no accountability for diverting funds away from LXP workers. If they aren’t paying the exploited, unpaid service users… where the hell does this money actually end up?

Is it time for an LXP Union?

Have you heard of an Lived Experience Professional winning a tribunal for discrimination at work? Have you even heard of an LXP taking their employer to a tribunal for discrimination at work? There may be a reason for that.

Lived Experience Professions currently do not have their own union to offer protection at work. Obviously, like any other employees, we can join any of the unions currently available if we fit their membership criteria. This is often an issue for people who are self employed – which is many of us. However, even those of us who are in a union seem to be unhappy with the service we receive. Cases of discrimination are usually not supported by legal teams and we are left high and dry at tribunals… which never happen. Refer back to the opening paragraph. Its also tough and a very excruciating experience to go through for anyone, let alone someone who is managing a mental health condition. Many people settle. Organisations obviously attempt to palm them off with the smallest settlement possible. There is no research that can be slipped in here to confirm the appalling service we get. Only personal experience and conversations with colleagues lamenting their own. 

The conversations are not just with colleagues, however. Leadership teams from within service user led organisations acknowledge this. There has been at least one attempt to set up a union. However, a union is a big undertaking. Who has got the time, or the energy? How is something set up that supports everyone? How do people on very low income afford the fees? What about self employed people? What about the training of union reps? The legal side? 

How would the union itself is actually a good employer to its own Lived Experience Professionals, leading by example?  An organisation cannot help others unless it can help itself, and just because an organisation is Lived Experience led, does not automatically make it a good employer to Lived Experience employees. It is the insight from that experience and embedding of that learning into practice that is the work we do, and we need to be able to do it ourselves to help ourselves. It is hard work.

Setting up a union may be something that is out of reach in the present – maybe we need our own collaborative, pressure group and/or working with an existing union to have our own division within a larger umbrella. At the very least to educate lawyers and national/regional decision makers – who ultimately decide whether they will or will not represent us at tribunal – why it is so important that some of these cases are brought to court and that awareness is made of the issues that LXPs face. The discrimination cannot be addressed until people see it. Presently it is invisible. Unions used to stick up for workers rights, change legislation and address discrimination in a much more proactive way when this was needed in the past. They need to step up for some of their most vulnerable members now – many of whom will fit in several intersections of marginalisation and been impacted by trauma.

This blog is acknowledging the need, but asking how we fill the gap. It is a discussion we need to have on a wider, national level… then somehow… make it happen.

The Difference Between LXPs & Involvement Staff

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.

#VivaLaLXPRevolution!!!

Update On The FOI Requests: Who’s Ballin’ & Who’s Stallin’?

At LXP Revolution, we have asked EVERY SINGLE MENTAL HEALTH TRUST IN ENGLAND about their recent response to employment of LXPs at senior level. That is 55 Trusts. We are swamped with info.

As you may (or may not) know, we are a bunch of lived experience volunteers. We are having to do this in our own time, managing our own health… so please bear with us. We will be updating this blog this week with where we are with each Mental Health Trust.

What we can say is that some Trusts have provided the information without any delay or issues. Others have not. In particular, they want us to name names of people within the collective. FOI requests require a name, usually an individual. But a company can make a request. In extreme circumstances, WhatDoTheyKnow.com will step in to make the request if a person needs to make the request anonymously.

We all know that LXPs face horrendous discrimination and career blocking, which is why we have used the name of the collective. We want to be treated equally to any company requesting information. Frankly, if it’s good enough for NHS England, who replied without any issues – its good enough for any other Mental Health Trust.

Keep checking back on this blog post this week for updates as we trudge through the data…

Which NHS Trusts Are On Santa’s Good List? Who Got The LXP Band 7 Funding??

Was your NHS trust on one of Santa’s Good List, ready to be blessed with a brand new Band 7 Lived Experience Professional (LXP) to join their staff?

At LXP Revolution, we’ve been heavily focussing on activism which highlights trusts who haven’t applied for funding to employ LXPs when given the opportunity, despite us likely being the most discriminated and least represented staffing group in the NHS. We say likely, because even in the Workforce Disability Equality Standard (WDES), the metrics used to measure the experiences & careers of disabled staff, we are not counted. As we are not counted, currently, we don’t count.

However, there are nuggets of hope. There were 24 NHS trusts who did indeed apply for the funding. This means that in theory there should have been 24 new Band 7 LXP posts created in England. With so many trusts giving excuses as to why they can’t employ LXPs, what do we learn from those who say they can? What are they doing differently? Building up our repertoire of examples of where it has been done gives us an answer when excuses are made as to why something cannot be done, because it can. It can be done 24 times over.

Knowledge is power. So we felt it was time for our next Freedom of Information request, stage 3 in our activism. This stage asked Trusts what they felt had enabled them to apply for the funding, as several trusts have mentioned short timescales as being a reason not to apply. Understanding why things work well give us more ammunition to work with when we are given reasons as to why people holding the power tell us that they won’t.

We also asked them about job adverts and whether people had been employed yet. Part of the issues we face as LXPs is not having consistent search terms or job titles when we search for posts on NHS Jobs. We are also inconsistently filed away, often sitting in the administration category, which is highly inappropriate for the work we do and may mean that rookie searchers miss posts when looking for a job.

See the FOI Request below, as well as the list of trusts it was sent to:

Dear ….

In December 2020 the Adult Mental Health Team at NHSE offered Mental Health Trusts the chance to apply for funding for a Band 7 KUF Lived Experience Professional (LXP) role. They have let us know via a FOI request that your trust successfully applied for this funding.

When applying for the funding:

• Have you employed LXP staff at Band 7+ before?

• What do you feel enabled you to meet the short turnaround & funding criteria?

• Was this decision made collaboratively with LXP staff – if not, were they made aware of the offer?

• Was the decision subject to an Equality Impact Assessment?

If your trust has advertised the post, please provide a:

• Job title

• Job Description

• Person Specification

• Date the post was advertised

• What category on NHS jobs it was advertised under (ie. admin, AMHP)

• If an applicant was successful & is in post

Yours faithfully,

LXP Revolution

There were 24 NHS Trusts listed on the NHS England’s list of Trusts who applied for funding, all of whom were successful.

In the process of sending the FOI request out, one trust – *North West Boroughs NHS Foundation Trust* – had been dissolved in 2021, and its services have now been transferred to Mersey Care NHS Foundation Trust & Greater Manchester Mental Health NHS Trust. Interestingly, Merseycare has applied, whilst Greater Manchester has not applied for the funding. It will be interesting to see if Greater Manchester utilises this opportunity to develop the Band 7 opportunity after all, if Mersey care will have 2 posts, or the potential post will be lost alongside the funding. Sheffield had a joint bid with its community mental health and primary mental health trusts. We just contacted the community Mental Heath team, in part because the primary mental health team was not listed on WhatDoTheyKnow.com. However as there is only one post, data from one team will be enough.

This left 23 trusts that were contacted:

• Avon and Wiltshire Partnership Trust

• Barnet, Enfield, and Haringey MH Trust

• Berkshire Healthcare NHS Foundation Trust

• Camden and Islington Foundation Trust

• Central and North West London Trust

• Coventry & Warwickshire Partnership NHS Trust

• Dorset HealthCare University NHS Foundation Trust

• East London Foundation Trust

• Essex Partnership University NHS Foundation Trust

• Hertfordshire Partnership University Trust

• Isle of Wight NHS Trust

• Kent & Medway NHS Partnership Trust

• Leeds and York Partnership Foundation Trust

• Lincolnshire Partnership NHS Foundation Trust

• Navigo CIC

• Midlands Partnership Foundation Trust

• Mersey Care NHS Foundation Trust

• Norfolk and Suffolk Mental Health Foundation Trust 

• North West Boroughs NHS Foundation Trust*

• Northamptonshire Healthcare NHS Foundation Trust

• Nottinghamshire Healthcare NHS Foundation Trust

• Partnership bid in line with Primary and Community Mental Health Transformation (PCMHT) developments. Sheffield Health and Social Care Foundation Trust (SHSC)((*done))and Primary Care Sheffield (PCS) – ((*Can’t find))

• Surrey & Borders Partnership NHS Foundation Trust

• West London Trust

You can see the requests & their progress here:

https://www.whatdotheyknow.com/user/lxp_revolution

Why did your NHS Trust reject an LXP funding opportunity?

The blog that caused the most fury on social media: why did NHS Trusts not apply for a funding opportunity in 2020 to employ a Lived Experience professional working at a Band 7 grade, when most Trusts use the excuse of not having funds to employ an LXP beyond a Band 3 or 4 level?

Our Freedom of Information Request revealed that 31 out of 55 of the NHS Trusts in England did not apply for the funding. All of the remaining Trusts who did were successful. This has left us with the question: Why didn’t the others?

This takes us to Freedom of Information Request Stage 2: Contact the NHS Trusts and ask them.

That is a lot of NHS Trusts and a lot of FOI requests. But at LXP Revolution, we know that we LXPs are worth it. Knowledge is Power. Research is an activism tool that can change harmful and discriminatory systems. We have seen this with the very recent #StopSIM campaign, as well as the adage ’if you’re not counted you don’t count’ – used to promote the monitoring of the LGBTQ population, and NHSE’s recent WRES (Workforce Racial Equality Standard) and equivalent WDES (Workforce Disability Equality Standard).

So, here is the FOI that will be winging its way to an NHS Trust near you:

Dear ….

In December 2020 the Adult Mental Health Team at NHSE offered Mental Health Trusts the chance to apply for funding for a Band 7 KUF Lived Experience Professional (LXP) role. They have let us know via a FOI request that your trust did not take up the opportunity to apply for this funding.

People who work in LXP roles face a high level of discrimination and blocks to their careers. Most NHS Trusts do not have posts beyond Peer Support roles (Bands 2-5).

Please provide answers to the following questions:

*Reasons why this funding was not applied for

*Was the decision subject to an Equality Impact Assessment?

*Has your Trust made plans to reapply for the funding, which will be offered again this autumn/winter?

*Do you currently employ LXPs in Band 7 roles?

*If you do not employ LXPs in Band 7 roles since declining the opportunity to apply for funding, please explain why your Trust does does not do so and what steps you are taking to change this situation.

Yours faithfully,

LXP Revolution

This will be sent to:

BIRMINGHAM AND SOLIHULL MENTAL HEALTH NHS FOUNDATION TRUST

Birmingham Women’s and Children’s Trust

BLACK COUNTRY HEALTHCARE NHS FOUNDATION TRUST

BRADFORD DISTRICT CARE NHS FOUNDATION TRUST

CAMBRIDGESHIRE AND PETERBOROUGH NHS FOUNDATION TRUST

CHESHIRE AND WIRRAL PARTNERSHIP NHS FOUNDATION TRUST

CORNWALL PARTNERSHIP NHS FOUNDATION TRUST

CUMBRIA, NORTHUMBERLAND, TYNE AND WEAR NHS FOUNDATION TRUST

DERBYSHIRE HEALTHCARE NHS FOUNDATION TRUST

DEVON PARTNERSHIP NHS TRUST

GLOUCESTERSHIRE HEALTH AND CARE NHS FOUNDATION TRUST

GREATER MANCHESTER MENTAL HEALTH NHS FOUNDATION TRUST

HEREFORDSHIRE AND WORCESTERSHIRE HEALTH AND CARE NHS TRUST

HUMBER TEACHING NHS FOUNDATION TRUST

LANCASHIRE & SOUTH CUMBRIA NHS FOUNDATION TRUST

LEICESTERSHIRE PARTNERSHIP NHS TRUST

LIVEWELL SOUTHWEST CIC

NORTH EAST LONDON FOUNDATION TRUST

NORTH STAFFORDSHIRE COMBINED HEALTHCARE NHS TRUST

OXFORD HEALTH NHS FOUNDATION TRUST

OXLEAS NHS FOUNDATION TRUST

PENNINE CARE NHS FOUNDATION TRUST

ROTHERHAM DONCASTER AND SOUTH HUMBER NHS FOUNDATION TRUST

SOLENT NHS TRUST

SOMERSET NHS FOUNDATION TRUST

SOUTH LONDON AND MAUDSLEY NHS FOUNDATION TRUST

SOUTH WEST LONDON AND ST GEORGE’S MENTAL HEALTH NHS TRUST

SOUTH WEST YORKSHIRE PARTNERSHIP NHS FOUNDATION TRUST

SOUTHERN HEALTH NHS FOUNDATION TRUST

SUSSEX PARTNERSHIP NHS FOUNDATION TRUST

TEES, ESK AND WEAR VALLEYS NHS FOUNDATION TRUST