Mental Health Peer Workers: Our lived experience. Part 2

If you are a peer worker (or work in a similar role) and want to share your lived experience, please submit a blog for consideration:
recoveryinthebin@gmail.com

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Being a peer support worker is an occupational health nightmare. Luckily I tend to think of myself as a bit of a martyr, so I managed to stick it out for a couple of years. I worked in the NHS in an employability setting. The main issues I had could be categorised under the following:

  • Conflict around my identity as a mentally ill person, my diagnosis and my legitimacy as a peer to people who were accessing services I had not yet accessed

When I was a peer worker I had never been with the CMHT as a patient. I has a brief stint at CAMHS when I was 15 where I was mostly told to take baths and sing Belinda Carlisle. I had face to face CBT when I was 19, and had been on and off SSRIs for the 4 years or so since then. Despite having clear barriers to work and education, my own doctors didn’t think I needed help when things were at their worst. I was encouraged to quit jobs rather than find the right support to sustain them, which is in itself a sign of the massive gap in societal privilege between healthcare providers and those they support. That is why I was drawn to being a peer in an employment setting, as most of my barriers had been due to negative attitudes of educators and employers. 

Despite these clear barriers I was facing, I did not share the experience of those in the service I worked in as a peer. I had never come close to being admitted to an inpatient ward. At the time, I had never seen psychiatry. I had a very vague diagnosis of Generalised Anxiety Disorder, but now I am aware that I am actually autistic. There’s a lot of overlap in experiences, but looking back it was very difficult for me to relate to many of the people I was working with. I felt like a fraud, albeit a well intentioned fraud. When I went for the role I had no idea how mental health services worked. I very quickly realised that my legitimacy as a peer would be questioned, but I was always honest about my background and the fact I was still “actively unwell”.

There’s a definite resentment in the survivor movement to “entryists” or people who have had moderate mental illness. It can feel like gaslighting. I’d like people to be mindful of stories like mine when they criticise individual peer workers, because I have experienced trauma my whole life from being boxed into neurotypical expectations. Add to that the notion of “recovery”, and how unattainable that feels to an undiagnosed autistic person who has internalised guilt and mental health stigma on top of the autism. I can’t speak for the “recovery” prospects of specific mental illnesses but with autism the way you are wired will never change. 

  • Triggering myself and those I was working with, as the boundaries of peer support were (and likely still are) ill defined

The NHS love professional boundaries. They are very rigid with them. The idea is that having strict boundaries will reduce dependency from service users, and that the individual staff are protected. What then are the boundaries for someone whose very job description mandates that their lived experience be used? There are attempts to develop codes of working for peers, but at the time these were in their infancy. Also, we are all human, and those of us who have experienced trauma and exclusion have a tendency towards empathy and protectiveness of others we relate to. This is really where the idea of peer support comes from. It is this dynamic that is entirely opposed to how the NHS operates, and why it is difficult to define boundaries in peer roles. Authenticity is one of the core values of peer working, as defined by the Scottish Recovery Network. How does one be “authentic” while maintaining boundaries? 

  • Being recruited on the basis of having lived experience, but still being subject to the same HR sickness absence trigger points and inaccessible sickness absence reporting procedures

Reporting absence was always a struggle for me, because by the time I had realised I needed to be off there was no pulling myself out of the hole I was in. I’d be zoned out, realise I was late or that I couldn’t move, and then be expected to make a phone call to work. Sometimes I’d be howling my eyes out. Sometimes I was literally on the front doorstep, leaving for the train and I’d stop and go back inside. The expectation was that I would call in. I’d get round this by texting, calling and not staying on the line long enough to be picked up (so they’d at least think I tried), or I would get my husband to call as a last resort. In the case of the latter I would hide under my bedcovers with my fingers in my ears until the call was done. 

The NHS is as rigid in its HR procedures as it is of professional boundaries, if not more so. Most big employers are. When well-meaning managers and teams are bringing in peer workers, they might overlook the potential implications of this. They probably hope for the best case scenario, or feel that they can support the peer worker to stay on the right track. We all know this isn’t how mental health works, and inevitably I ended up being pulled up to HR for sickness absence. Given the nature of my meltdowns I recover very quickly, so any absences were a day long, two at the absolute most. Usually all I would need to do would be to go back to sleep for a bit and reset. The frequency of my absences meant that I hit the trigger point, I believe it was 4 episodes in 12 months. (This is kind of appalling when you think about it, even for non-disabled people).

  • Being encouraged to act as inspiration porn embodied, while still struggling to cope in work 

When I had the inevitable HR review I was referred to occupational health. I told the nurse about my role and what was triggering me. She was very understanding, and had ran a peer group for depression herself. She seemed baffled by the fact my role explicitly required me to air my trauma on a daily basis. I floated the idea that I be allowed to withhold my story in work for a while so I could patch up my mental state, or that I be put on redeployment. She said that those two options could basically result in me having no job and it would be too risky. I’ll always remember her comparing my role to Pudsey Bear.

I felt awful telling service users that things would get better while I was struggling so much. Some of them knew I was struggling, given that I cancelled appointments at times. I even had a panic attack in front of one because the space we were meeting in was too noisy. She instantly turned to caregiver mode, and she did a good job of it. That said, when we are expecting to be the recipients of support, it can be quite jarring to suddenly be the provider of said support. I debriefed with my manager and she reminded me that we are all human. It was nice because in other roles I have been threatened over much less.

  • Watching individuals be encouraged to become peer workers despite the trauma it was causing me, and the lack of jobs or progression in this “profession”

People in services like the sound of peer support work. They want to give something back and help others like them. That is admirable, and no one can deny it. However, they also might long for a safe working environment with colleagues who understand their situation. When this is promoted as a benefit of peer support work, it lets society and employers off the hook. ALL workplaces should accommodate people with mental illness. People should not be encouraged to use inclusive workplaces as a crutch at the expense of their own hopes and dreams. I worked with people who were highly skilled and qualified who had somehow decided to become peers, despite peer working being capped at a band 3 salary with no progression route. 

When I did interview for a band 4 in a similar but non peer role, I was asked a very uncomfortable question at the end of my interview. “What is your own personal recovery goal?” I can assure you that no other candidate was asked that question. I fumbled through some response about how my career development was my next goal, and that was why I was sitting in front of them. No I did not get the job, and I was given no feedback despite asking several times. 

Luckily the health board I was with had really good staff development opportunities. I was able to access a bursary to do a postgraduate qualification. My manager was also really good at giving me opportunities for networking, taking ownership of developing processes around the work, some creative projects and also leading on development sessions for colleagues. Doing this enabled me to rebuild my confidence and learn more about the mental health movement. I think peers need to be given the freedom to learn from people across sectors so they can really understand the bigger picture in terms of inequalities. 

  • Witnessing the trauma people were experiencing at the hands of employers, health professionals and the welfare system, yet following a biopsychosocial approach

When people are being bullied out of their jobs and being denied the financial or social support they are entitled to, they need practical support. They either need lawyers, or the systems themselves need to change. The biopsychosocial approach waters down what makes the social model so effective and bold. Had the barriers never existed, the individual disabled people would not have the confidence issues the biopsychosocial model claims holds us back. We can do all the WRAPs and graded exposure we like, if society itself does not change then we are pushing individuals to potentially retraumatise themselves. These approaches are no doubt effective on some level, but we need professionals to advocate for us in the face of austerity and discriminatory practices. Unfortunately, professionals seem to have more clout than we do when trying to influence change, and they need to recognise this and step up. 

  • Work as a health outcome and rigidity to the IPS (Individual Placement and Support) model

One of the benefits of peer support is that it is largely born from wanting what is best for the other person. The service I worked in followed the IPS model, and sometimes this got in the way of doing the right thing for the individual. Some jobs and internships were passed over because they were not permanent, as IPS fidelity scales rate permanent employment above all else. In a precarious job market which becomes even more challenging with specialist fields, sometimes people need to take temporary work to build professional experience. This is a fact for anyone looking for work. Again, people with specific interests, experience and qualifications were somehow finding themselves down the care worker or sales assistant route. IPS is not delivered to a payment by outcome model like welfare to work programmes, but caseloads are restricted to 20-25 people per worker. This leads to a considerable waiting list, and the job retention service was in even higher demand. 

The IPS model is controversial in the survivor movement due to its focus on work as a health outcome. It is often seen as a smokescreen for DWP agendas. (The service I worked in had zero involvement with the DWP or welfare to work unless the service user asked for it). I genuinely feel that work can be a health outcome for those who want it to be, and only when the work is good for that person and what they want to achieve. Work has been a massive part of my own wellbeing, but it has also caused me heartache and stress. It is important to recognise that work itself can be the cause of mental illness. Again, any approaches to helping the individual need to be matched or outweighed by pressure to employers to make positive changes. 

IPS guidelines state that if someone says they want to work they should be encouraged to find work in a timely fashion, no questions asked. What if people are not well enough to work, but they feel they need to because of family pressure, financial difficulty, or societal expectation? How do we know when someone is actually ready? IPS is good for countering the attitudes from professionals who tell disabled people they can’t work. Specialised job retentions support is crucial for people who are struggling, rather than letting them just walk out of their jobs. Having the correct support to help people who want to work should absolutely be part of a package of services available to those who need and want them. The survivor movement should champion approaches that work well for us, and cast a critical eye over those that do not serve us or could do so in better ways. Writing off services altogether on the basis of the wider context around welfare to work does not help the people who want this type of support, and they do exist. In any case, there needs to be more services to support mental health in work. 

  • The use of peer work to plug gaps in services which are being stripped to the bone by cuts 

While I know that my role was created out of a genuine desire to do the right thing, I can see how easily peer roles could be used to plug gaps in services. At times I was doing the work of the band 5 staff in helping people with job applications and interview preparation. I had no training in this, everything I knew I learned through my own job searches. (If that is enough to qualify someone to be an employability worker, then there is a massive talent pool of disabled people out there who could do these roles! Employability services often hire sales people because they have experience of working to targets.) 

Employability overall is a lower risk area than inpatient services. I had a degree in healthcare, but not mental health specifically. I knew confidentiality, boundaries, active listening and working with vulnerable people. I did ASIST training and mental health first aid training. I was fairly well equipped for working with the public, peer angle aside. At times I was likely seen as an infiltrator to the peer movement, because I was equally equipped with lived experience and professional training. 

When peers are being used to support inpatient services, I would be a bit more concerned about how prepared peer workers are. We know how to support each other, we have always had to. The support we give those we know as a peer is very different to how we would support someone within the confines of the NHS. 

  • Do those who recruit peers truly value their lived experience as a matter of principle? 

There is a conflict of interest between being a good peer and being an obedient employee. When I was a peer it was in my job description to challenge the status quo. I did my best to do that, aided with my brutal autistic honesty. I actually had to blow the whistle at one point, and luckily wasn’t written off by managers. I would hope that would be the case for any peer. My line manager was very encouraging of me voicing my views on behalf of service users. Not every team who has a peer worker will be this welcoming of dissenting voices. Again, the identity of the worker is in jeopardy. Do they appease, or do they fight, risking their livelihood and reputation as an employee? 

Overall, my own experience of peer work led me to where I am today. I feel that I can better advocate for people in distress and I have a much wider understanding of the barriers we face to being included in society, namely the workplace. I was very lucky in that the service I worked in was staffed by good people, there were development opportunities and I had a good deal of autonomy. However, I can’t vouch for entering peer working as I don’t feel like enough research has been put in to the potential negative impact of the role on the worker and service users. More has been done on the latter as far as I can tell, but both are equally important. Good intentions do not always result in what is best for people, and the scenarios we are talking about here are far more complex than tea and sympathy. 

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recoveryinthebin

A critical theorist and activist collective.