The lovely Tamar Jeynes sowed the seed and encouraged me to write this blog. Without that push it probably would have remained unwritten. So here it is, brace yourselves.
I’ve tried to begin this many times and failed; I’ve avoided and skirted around. I’ve denied myself the need to process and heal from the shit that happened around me – the same shit storm that I see ripping apart and taking the lives of my colleagues, friends and peers. It’s time to talk about being a Lived Experience Practitioner (LXP) in systems that aren’t fit for our purpose; how we’re dispensable, hung out to dry and exploited by the very systems and organisations that have or should provide ‘care’, ‘healing’ and ‘containment’ for us.
18 months ago I resigned from my role as a Peer Support Worker (PSW) in an NHS trust; a job that I loved so many facets of and a trust that I was once so passionate about. Why? Well, here’s how not to do Service-User Involvement (SUI) or LXP working.
In 2014 I applied for my trust’s Peer Support Worker training, developed and delivered by the Institute of Mental Health. Initially, I was told I had been unsuccessful as I’d already been given the opportunity to become a KUF trainer (only 1 opportunity per SU, people – doesn’t matter if your knowledge, skill or experience is greater than anyone else’s). After someone dropped out, the powers that be decided I could have this opportunity but only if I were forever grateful and indebted to them.
I’m not one for limiting people or seeing them as ‘delicate’ but the majority of the people that were selected for this training weren’t suitable at that time. One person was still under a day hospital, another was coming to the training on S17 leave from hospital (sadly, they weren’t able to complete), people that were known to be in the very early stages of recovery, coming off section a few weeks before and discharged on a CTO. These people were exploited. They were the tokens of the trust’s campaign – the poster children of ‘recovery’. And because someone had given them an opportunity and ‘believed’ in them, they were so starry eyed they couldn’t see they were being fucked and their well-being toyed with.
This training package was ‘gifted’ to the organisation as an incentive to buy more training as peer support grew within the trust. The trust took this opportunity 1) because it was free and 2) because surrounding trusts already had comprehensive peer support teams within their organisations. It was very much a case of keeping up with the Jones’ and box ticking. The director of the work stream at that time was very much only interested in what would look good, what they could pay lip service to and what could only ever be utterly tokenistic.
The training was a 10 day accredited degree module with a 5000 word essay. I got 84 motherfucking per cent on that essay. I completed this course while at university full-time, delivering KUF nationally and completing a 100 hour unpaid placement for the same trust. Did I get any recognition? Absolutely none. Oh, I tell a lie, I got a cupcake…
When you embark on training up a group of people to fulfil very specific roles, you’d expect posts to be ready for them to walk into, wouldn’t you? Else why would you do it… the 16 of us that completed waited 9 months for posts. 10 of us actually took on those posts.
When you’re introducing a completely new way of working, you’d expect staff to receive some sort of training or an information session around how to embed this way of working into teams and for it to be a fully integrated part of day-to-day practice. That’s what happens with any other major change. Change to the notes system? You all need to know about and understand the new one. Change in policy and procedure? You can bet there’ll be 20 emails about it, when it’ll go live, what you need to know and how to manage it. So imagine implementing Peer Support Workers into teams that have no understanding of the work they do, why they do it, its ethos or its value, with no notice and not proving those PSW with any support. Because that is what happened. We were enforced on teams that didn’t want us, that weren’t appropriate placements for us – one colleague was essentially forced to work on a forensic unit they used to be in, another in a CMHT they used to be attached to.
The posts were as bank staff at a Band 2. This is the same level as a domestic. I had undertaken accredited training and allegedly been employed for my experience and was paid the same wage as domestic staff. Support Workers who have no formal training nor utilise their lived experience as part of their role were paid a band higher… It’s as though my training, knowledge and experience was a deficit rather than a valuable attribute. As bank staff I wasn’t afforded holiday or sick pay or a pension contribution. Eventually my manager, after pushing the aforementioned director relentlessly to no avail (who refused to employ me out of their budget) decided to go to their own service manager and negotiated for them to employ me part-time. I took it.
You may ask why. Well, I enjoyed the work, I was making a difference to people, I had a supportive manager and supervisor and after 6 months as bank staff I wanted more security. I was also the only PSW at that point to be offered contracted employment; it felt like a foot in the door to create a change. On top of that, I was a student with a mortgage to pay and the organisation I delivered training for (Emergence) had gone into liquidation. I needed the money.
The team I joined in the beginning were a bit tentative about my involvement but did begin to utilise me and were aware of my expertise. They knew I was training to be a therapist and I think for some of the unqualified staff that felt a little threatening. In fact, on one occasion outside a client’s house, a colleague who was a support worker spent 15 minutes ranting and raving at me about how they’d never been given any opportunities to progress and it was unfair that I’d got to go to university when they’d been working hard and they had suffered hardship too…
What was more apparent was the organisation’s blatant discrimination. I was expected to make notes after meeting with clients, telephone calls, etc. I was not allowed access to the notes system. This decision came from that director again – apparently it could have been too tempting to access our own/each other’s/family’s/anyone we ever knew in the world EVER’s notes. Which means we aren’t to be trusted, we are other, we have different rules for us that are shaming and punitive. I was being discriminated against for the very reason they employed me. My mental health problems are considered to be a disability and that is a protected characteristic in the same way being LGBTQ or BAME is. Imagine telling an employee they were not allowed to access systems because they were gay or trans or a person of colour. Instead I had to write notes in a word doc and email it to someone to put on the notes system. I had to ask colleagues to look for addresses and phone numbers for me. This meant I was a constant nuisance to others, very clearly defined as separate and not to be trusted. This also meant I was unable to read the notes of the clients I was working with and understand what had been going on for them to inform how I could work with them and meet their needs.
I would regularly receive messages from my PSW colleagues stating they weren’t happy, they weren’t supported, they were being told to sit it CMHT lobbies and get people to fill out friends and family tests. Many had already become acutely unwell and had been hospitalised. I raised concerns with our ‘mentors’ – the staff that did the training alongside us; however, one of them had left after being unable to put their name to this shit show any longer and the other, although lovely, was spineless. The replacement ‘mentor’ hadn’t done the training, had no concept of peer support or what should be happening. The ‘mentors’ came to review me in my post and speak to my manager and supervisor. This was about 3 months in, I never saw them in that capacity again; I worked there for 20 months. That was the level of support I received from them.
I did meet one of them in a meeting I’d arranged to ask for some funding to attend the British and Irish Group for the Study of Personality Disorder (BIGSPD). I explained that my abstract had been submitted and accepted, how it centred on peer working, my experiences and what I’d learnt from the clients I worked with. They said it was a really good idea and after the PSW programme hadn’t been doing particularly well a positive story and some good exposure would be helpful for others to see and hear. This was taken to that dickhead director again who said no outright, no real rhyme or reason, just no.
I fought and fought to get funding to go, including applying to the trust’s attached charity, which essentially said they weren’t interested in funding this. I emailed BIGSPD and relinquished my place. I received an email back saying they would do their best to source me a funded place somehow. A few days later I had an email from the then Co-President, the phenomenal Kath Lovell who offered me their place as they could no longer attend. I was so grateful and honoured that Kath had offered that to me and went into work to book the time off. I was told I could not take it as holiday and I would not be paid despite being there to represent the trust. I could take it as unpaid leave and that was it. The conference was in Inverness and I needed to fund travel to get there, which meant I’d have been substantially out of pocket if I had attended – to represent a trust that could not give a fuck.
I bumbled on in post and at university and I was becoming increasingly bitter about my role and the colleagues around me. I spent meetings repeatedly saying “what’s the value of this?”, “who benefits from this?” to be met with eye rolls because no one ever wanted to think. There was one senior member of staff who at first seemed indifferent to me but I was then told they were regularly speaking about my work in high-level meetings. They stopped me in the corridor one day and asked for my opinion on a client, I went to answer and was met with “don’t speak, think!”. I have no idea why they chose to talk to me that way but I was taken aback by it. And so at a staff gathering, while they were sat alone, I tried to talk to them. I tried to explain my thoughts on this particular client that they were hell bent on sending to medium secure. I also tried to put across my thoughts on a few other clients that we were doing a real disservice to by keeping them enmeshed and dependent on us as a service by being so risk averse and how we could try to do things differently.
That was the beginning of my undoing. I was told I didn’t know what I was talking about; I didn’t understand anything and they couldn’t bear to listen to this any longer. That was hard to hear. For the first time in such a long time I had been made to feel like my understanding was bullshit. When I started my ACCESS course I knew more than most of the staff, when I went into university it was the same (apart from research designs), when I deliver training I’m the expert and not just by fucking experience, I know shit. I know MY shit. And I get it – big fish, small pond; that allows me to be that. In this particular moment I was like tiny krill in a fucking whale’s mouth.
Back at work things seemed to change fairly rapidly. There was a lot of passive-aggression from this particular person. They’d sit at my desk to work from if I was on a visit or even went to the toilet; regardless if other desks were free… they also had their own assigned desk they could have utilised. I found my notebook thrown in the bin next to my desk, the post-it I’d doodled my name on and stuck to the bottom of my monitor months before I found ripped up and sprinkled into my keyboard. They were snappy and surly and snarling when I tried to interact with them or tried to do my job and hold client’s in mind not just a list of current symptoms. What was interesting is that the rest of the team also began to see me as a problem and I became a pariah.
My supervisor had a really good relationship with this person and they often defended their practice and general ways of being as did my manager and I didn’t feel able to do or say anything. It’s not that they were really unsupportive but I didn’t fit, I could no longer be heard, I didn’t seem to have a value within that team anymore, I was constantly picking up slack from some of the support workers, I lost my identity. It made me really fucking unwell.
I’ve spoken previously about 2 admissions I had for the first time in 8 years. Well, there was a 3rdand then about 3 months on home treatment. On the 2ndreturn to work I was put on a 1ststage disciplinary for absence. I was also no longer to claim sick pay. I was in hospital because of them, the way I was being treated and the trust’s lack of containment for me but I was being punished, not only for that but my experience of mental illness. The reason they fucking employed me. Another shining example of how organisation’s policy and procedure isn’t fit for purpose when working with LXP staff. Within a few weeks I was really unwell again. I’d graduated from university and started my psychotherapy masters. I’d printed out my course handbook at work (we’ve all done it) and left it on my desk. That person walked past, saw it, picked it up, sneered and threw it back down on my desk. Something within me just broke. All of those times I’d been told I was stupid, a failure, I was never going to amount to anything, I wasn’t good enough just came rushing to the surface. I was in hospital by the end of the week.
I’ll go into the specifics of that particular admission another time because it was definitely one of the most traumatic I’ve experienced, but it made me recognise something.
I was in hospital, constantly tying ligatures, finding whatever I could to cut with, I wanted to die. After having a ligature cut off, an amazing Nursing Assistant who knew me from my recent admissions sat with me while on 1:1. I was crying and trying to create some sort of ligature with my own hair (in fairness it is past my bum), they were trying to wrestle my hair free and repeatedly saying “please tell me why you’re having to do this, what’s wrong?”. For the first time I spoke about how I was being treated at work, in an organisation that couldn’t and wouldn’t support me. I was isolated; I’d seen most of my PSW colleagues drop away, by this point I think there were 5 of us left. And then the realisation of this wasn’t just about me, it was witnessing and being party to the retraumatisation of others. Of my people.
The NA held me by the shoulders, looked at me and said “Leave. Don’t you dare let them do this to you. Fuck them.” I’d never even considered resigning as an option, I think I fully expected to die in post. I knew then that’s what I had to do. I sent my best friend this message and it was like a weight had been lifted. I finally understood where this had all come from.
I was told I had to serve 3 months notice but advised by the trust and occupational health not to come back and stay off sick. I was robbed of saying goodbye to my clients that I’d worked closely with over my time there; people who had so many experiences of rejection, abandonment, inconsistency and being let down – the trust reinforced that for them. I had to go to the office to pick up some of my stuff and was basically treated like I didn’t exist. It was the final nail in the coffin that made me realise I’d made the right decision. I was due to start a new role elsewhere and was glad to be rid of them.
What I hadn’t anticipated was how this experience rendered me silent, stripped my core away and left me with embodying the role of a tokenistic LXP only talking about my experience and not what I know; just like services want. The confidence to do that had been kicked out of me. At university I’d forgotten how to talk to people, which isn’t that useful when you’re training to be a psychotherapist. I isolated myself from my peers, didn’t make any friends, didn’t involve myself in any discussion or exploration work. You know when Ursula takes Ariel’s voice in The Little Mermaid? It felt like that, except I hadn’t been compensated with amazing legs. Again, I became acutely unwell very quickly but managed to avoid admission. I spent months on Home Treatment instead. I left my masters course. The thing I had been working towards since I was at the end of my group therapy programme in 2013 (shit, that’s 6 years ago today!).
In March 2018 I headed to BIGSPD, this time in Cardiff to deliver a talk illuminating my experiences of peer working. I submitted the same abstract as the previous year but the content of the talk had become very different. I opened my talk with some disclosure “If you’re hoping to hear what’s in the abstract, please leave now because you’ll be bitterly disappointed”. I could not stand there and give a talk about how wonderful my experiences had been and how great peer working was. It would have been beyond incongruous.
Sandwiched between 2 talks on forensics (not sure who thought that through!) I explained my journey through the trust, team dynamics, organisational disturbance and it being utterly unthinking as far as LXPs were concerned, discrimination, how teams refused to be reflective or reflexive about the client group we were working with and most importantly how it harmed me; in a sense vicarious iatrogenesis. I saw my clients being retraumatised by those that provide care and couldn’t do anything to stop it, that in turn traumatised me.
I had never delivered a talk alone outside of university, I had delivered some training alone but never in front of a group of esteemed academics, psychiatrists, psychologists, nurses, OTs, LXPs, etc. I felt very exposed and vulnerable without the comfort of my colleagues. I got through it and I received some fantastic feedback; my experiences were being heard and validated and those within that room were interested to hear my opinions on what could have been different and how should new initiatives like this be implemented. Some people went on to use that information to underpin their own implementations of LXP working within their respective trusts.
Now as a qualified integrative counsellor, I found myself wanting to discard my service-user identity. I didn’t want people to listen to my SU voice, I wanted them to hear my ‘professional’ one. Previous experience had affirmed that an LXP voice has no place and that only occupational, not lived experience is valued At that point, I had no idea I could utilise both in tandem. This ‘identity disturbance’ (classic Borderline) started to cause conflict in my new work. I’d been given the role of Lived Experience Lead at a BAND 8 working with Beam Consultancy and the unbelievably talented Welsh wonder that is Keir Harding. I’d worked with Keir a few years prior and was so impressed by him I visited the Therapeutic Community (TC) he was working in at the time. I wanted to be able to do what he did.
The thing is, when you’re given a role that is very much defined by your lived experience and the lens that experiential knowledge that brings, it may be a tad unhelpful to never want to look through that lens. I was able to utilise those experiences during client work but found it hard to reflect on my own experiences and what would have been helpful for me or what my understanding of the situation was through this lens.
And then in true Borderline style, the seesaw flipped and I only ever saw through a LXP lens, accused others of not understanding clients and felt like I had to protect and rescue. After relentlessly exploring this in therapy, I learnt to integrate those 2 aspects and hold my dual identity. I was still missing the fight and fervour I once had for LXP working and felt stagnant and stuck. I felt like the work I was doing had no real meaning, which isn’t true because we were bringing people back to the community that had been within institutional care for decades.
Around September 2018, fellow LXP and indescribably fantastic human, Sheena Dean put a call to LXPs that had worked under the Emergence umbrella and shared her thoughts on the need for peer supervision. Several of us agreed that this was something that was so needed. We were working in such isolated areas of service with no one that understood our identities or ways of working and that we were missing out on a vital part of reflecting on and informing practice. Every other discipline has access to discipline specific supervision; why aren’t we? Why is this not embedded into our working lives in the same way it is for a psychologist, nurse, OT? Why do we have to do this in our own time at home for LXPs to feel supported?
We took this to BIGSPD 2019, Durham as Post Personality Pioneers, made up of Sheena Dean, Mel Ball, Tamar Jeynes, Sue Ellis and myself; from this our collective Pioneer Process was born. We spoke of the difficulties we face as LXPs within systems that do not fit our ways of working or meet our needs and how that it is to our detriment. We pay the price for those systems not being fit for purpose, sometimes it costs us our lives.
We won a fucking award.
When I started working closely with my peers again, heard their passion, understanding and saw their sheer fucking skill, a light switch was turned on within me. I am repeatedly inspired by my LXP colleagues who work in a variety of roles utilising their experiential knowledge and that what makes us coming together such a rich melting pot.
On the 9thof July 2019 myself, Tamar Jeynes, Mel Ball, Sheena Dean and Dr Sarah Carr went to Westminster to meet with MP, Sir Norman Lamb and tell him of how Service-User Involvement was at the threat of extinction. We shared our experiences of working within the NHS and User-Led Organisations, what works, what doesn’t and how there must be legislation to A) ring fence funding for LXP roles B) allow LXPs a progression pathway without losing them to more traditional trainings and C) standardise what involvement should look like in order to safeguard and provide better security for those working as LXPs. This was heard and validated and how far it will go, I have no idea – time will tell.
To round up!! The NHS has done an extraordinary amount for me but it took a lot from me too. I lost who I was, the confidence in my own ability and knowledge and my voice. I was known for saying the unsayable, stripping back the layers of bullshit, corporate wank and calling out poor practice. I became too frightened to do that anymore and I lost my USP. Pioneer and my peers, along with encouragement from Keir Harding allowed me to find that again.
My experience isn’t unique to me. So many of my colleagues and peers live their working lives being poorly paid with no security and are easily dispensable and while there are some good areas of practice, they are few and far between. Organisations need to work more cohesively with one another to ensure that everyone is getting the support, treatment, understanding and payment they deserve.
We deserve the same as generic staff – we often possess something they never will. It is fucking valuable and it is needed. The fight is hard but we stand together.