Content warning: This article briefly discusses self-harm. 

A couple of years ago, I almost dropped my coffee cup when I came across an advert for a post as a peer worker for people with Borderline Personality Disorder who themselves had that same diagnosis. They would be a senior clinician, have a limited caseload and be paid somewhere between £55 000 and £65 000. At last, I thought, and excitedly showed people the advert; a look what is possible moment!

Today I am in a slightly more reflective mood, wondering if that very niche corner of peer work I occupy in policy and rights reflects the skills I bring to it. Like many others with mental health problems, I work part-time, do, and earn £18,000 a year which, for a part-time job, seems very reasonable. I dropped my hours to be Joint Vice-Chair of the Scottish Mental Health Law Review and must get about £4000 recompense in lost earnings a year for this. I love these pieces of work and know they are at the higher salary end for these peer roles, so I do not begrudge the Review or my employers.

Does a mental health condition limit your professional ambitions?

But I am 58, and sometimes I think; is this quite right? Sometimes I imagine having just a bit more money so we could afford an extension to our house so that everyone has a bedroom and no one has to sleep on the sofa bed anymore. It is maybe a matter of sour grapes and overly negative because, after all, how many people on a Compulsory Community Treatment Order with a diagnosis of Schizophrenia have a job? I feel fortunate to have worked for the last thirty years when I know almost no one else has had this opportunity.

Sometimes I think to myself: I have an MBE for services to mental health; I was joint service user contributor of the year at the Royal College of Psychiatrists. I may not be an academic, but I have had opinion pieces published in journals like the Lancet Psychiatry, the International Journal of Mental Health and the Law and many others.

When I worked in advocacy, I carried out consultations with thousands of people with lived experience. Even though they were not academic papers, the subsequent reports influenced National and Regional policy time and time again and acted as the catalyst for the establishment of and siting of many services. I was a member of the last three reviews of Scottish mental health legislation. I have spoken at the United Nations.

My book (START) is used to train Mental Health Officers and Student Nurses. I have given so many speeches, I can hardly remember most of them and met so many people who have said these changed their attitudes to issues in mental health forever. I have spoken abroad many times, where our work in advocacy and stigma was seen as a model of how to create a movement of lived experience. I have been on the telly, in the papers, on the radio. I have been asked to help people understand the power of and the value of the peer research I do. The list goes on; I could fill a book with it.

The use of peers in rights and policy development and good practice is still in its infancy despite the work of the last few decades, but it makes me think of other peers and how they have fared. I know so many other peers who do a superb job in the third sector on tiny salaries, scraped from trust funds and the odd grant from councils.

They have often learnt everything from development work to management skills by direct experience. They have navigated grievance procedures, funding applications and business plans by learning as they went. They have not had HR departments or accounts departments, or professional bodies to back them up. They have not had time for holidays, and their wages are often pitiful.

I hear so much about the Gender Pay gap and increasingly wonder if there is such a thing as the mental health pay gap? It seems to me that it is self-evident that it exists. Probably an irrelevancy to most people with a severe mental illness because the thought of gaining employment is a very distant prospect for them.

I don’t have any meaningful qualifications, just as many of my peers don’t. I was lucky enough to go to university and remember being marched to the doctors by my lecturers after I just wrote poems in my finals. I wittered something meaningless about the travesty to authentic learning that Higher Education was and refused to speak to the doctor even though my shirt sleeves were itching against my skin, having dried into the cuts I had been making on my wrists. The doctor said I had the right not to speak to him, so I never gained a degree. I am not sure if I could get one now. I think I am clever enough but am not sure I would fit at all neatly into academia.

I think, for many of us, this lack of education has stopped us from getting comparable pay scales to our contemporaries, despite the skills we have. When I am off sick, I am off sick for months at a time. In our small department, I just spent three months off sick. My colleague had to take six months unpaid leave the year before because she was caring for a mentally unwell family member. Should that be an issue? I suppose, much as I dislike admitting that, despite our energy and ability, we might not always be seen as workers that can be relied on to be there, come rain or high water.

Is the value of advocacy and life experience devalued?

Is there prejudice, and does it stop us from earning the salaries we should? I think there is, though I don’t think I have personally experienced it.

Is it that funny combination of impairment that stops us from reaching our potential and the occasional inability of organisations to deal with the idiosyncrasies mental illness can produce in us? Is it right or wrong? I have no idea! Is my lack of indignation a surprise? I think not.

Most of my friends have been on benefits for years; many of them have been doing similar work to me but for no pay at all. They often say they don’t want to pay. They say the act of speaking for their community should not be measured in money. It is just what you do. The money would make a contract out of belonging and community; would degrade what they were doing and mean that something as basic as the connection gets overtaken by the pressure of performance and targets and evaluations, and that is not what they want their world to be.

I think I straddle these worlds. When I sit in meetings with professors and psychiatrists and senior managers and heads of this and that and know I am contributing just as much as they are but that I earn so much less than them, I can feel a twinge of resentment, quickly replaced by the knowledge that what I do, I love doing; would probably do for nothing if I didn’t need to help support my family.

A few years ago, I remember giving a talk in England where the chair of a Mental Health NHS Trust was open about his own experience of Bipolar and how impressed everyone was that he could be so visible. I come across highly successful people who have a mental illness more and more often; the number of managers and nurses, and psychiatrists who are now public about their mental ill-health is wonderful to see.

Maybe that visibility will lay the path for those, like me, who have worked for decades to make a difference and sometimes would prefer to get their clothes from charity shops through choice and not necessity and maybe, one day, my friends and my peers who work for even less or nothing at all will – I don’t know what.

Despite these words about a mental health pay gap and maybe, as more evidence as to why I don’t earn a great deal, I think, one day, I would prefer to join my peers where we support each other, encourage each other, share our food and our stories and somehow, someway pay will not be the issue but neither will poverty.

I don’t know what sort of society that would be, maybe one where people like me are not jealous of the status of others and no longer, through the shame of years of mental illness, try to prove over and over again that we are of value to ourselves and society and instead find our value is recognised from the outset.

 

Mind’s Infoline can provide information and support regarding getting support for anxiety, self-harm, and depression. Call 0300 123 3393, or email at info@mind.org.uk for information and signposting services. They are open 9am to 6pm, Monday to Friday (except for bank holidays).