“Work is good for you” is a mantra inflicted on everyone of working age including mental health service users. I don’t think the reality is straightforward and work can feel perilous when it is insecure, (zero hours contracts being the clearest example), low paid, low skilled with employers whose priority isn’t to ‘promote staff mental wellbeing’. I do work full-time though didn’t achieve regular paid work until I was 33 years of age. Please bear with me as I explain this statement since I feel I need to justify it in case anyone assumes I was lazy or went travelling the world.
When I was 18 I reluctantly dropped out of university with a weight below four and a half stone. I spent the next five years being refed and rehabilitated from Anorexia. At the age of 23 I tried to make a new start with a disabled person’s traineeship for a government funding body. My manager terminated this fixed-term contract after I disclosed in confidence that I was distressed and self-harming outside of work. My life then fell apart and the self-harm worsened with paracetamol overdoses. I was fortunate to meet a community psychiatric nurse who saw beyond the self-harm, encouraged my potential and need to stay busy. I volunteered at a local Citizens Advice for nine years during which time I was hospitalised for countless blood tranfusions and even sectioned on the psychiatric ward due to pressure from A&E medics for services to do something. In my early thirties, while still under the community mental health team, I came across an incredibly hard working, sound and enthusiastic vocational adviser, using the Individual Placement and Support model, who motivated me to finally contemplate a meaningful, appropriate and chosen job.
I believe the structure of work helps me now though work is inherently stressful. I never want to imply that I have done it and so should others with mental health issues. I have seen this bullying attitude amongst peer leaders who had chosen working in a supermarket or self-employed consultancy on mental health over claiming benefits which they saw as a mark of disgrace and welfare dependency. Some service users progress to working within mental health services in peer worker roles which are usually underpaid and undervalued by their NHS trusts. However, I decided to do administrative work away from mental health care, since I feel too much of my life has been lost to mental health already.
I have many friends who don’t work due to their mental health and I would always advocate for their need to be left alone by the Department of Work and Pensions (DWP) and the various organisations, which can include NHS trusts and mental health charities, acting as their agents. While the fear of being made to do ‘any’ job, if found fit for work, did propel me to act before I was forced, I don’t support this underlying threat tactic.
Apart from the benefits questions, I have been wondering whether there are unspoken disadvantages to being in work when you have ongoing mental health challenges. These disadvantages include health services seeing an employed person as recovered, the lack of support in the workplace, the inability to disclose less appealing diagnoses, for instance ‘personality disorders’, eating disorders or addictions, and the difficulty of accessing benefits support which enables you to keep working.
This week I attended a CCG organised ‘Coproduction’ workshop on local care and mental health using my annual leave so that I could speak freely. A consultant psychiatrist was the speaker representing the main mental health trust in this area. His presentation and words were: “only the most severely impaired should access secondary services.” I interrupted at this point to ask how he would define ‘severely impaired’ and if it could include people in work. The speaker said that it would not because: “they wouldn’t want to see us as they are out working providing for their families.” I pointed out that someone in work could still have a crisis, indeed could need hospital admission. I felt a lone voice in a room of professionals where others probably agreed that all patients who can just about function should be discharged back to primary care to release capacity in the system, outing those who are the equivalent of bed blockers in hospital.
There are logistical difficulties of accessing mental health services if they decide you deserve an appointment when you work. Even the mental health services embedding in primary care operate during core work hours and may be in a town away from your place of work. Since I’m fully aware of the huge demand on specialist services, it does kind of make sense how services view someone working, even if signed off sick, as more able to fend for themselves. Perhaps there is also a mistaken belief by professionals that working is a curative therapy which then creates a lack of comprehension why someone, particularly with non-psychotic conditions, should become ill when in work. Services only want to see people short-term to work to Recovery model goals, so if you have achieved paid employment then this can in itself be regarded as marking the end of the treatment journey.
My experience of applying for Personal Independence Payment, once Disability Living Allowance ended, is that working counted against me. The medical report from my face to face assessment with a general nurse employed by Atos repeatedly said “in her social history she states that she works full-time with no specialist input.” While I scored 6 points these were on account of my eating disorder, thankfully being in a job doesn’t denote that I can eat three meals a day or prepare a simple cooked meal. The assumption made by the assessor and the DWP is that if you hold down a job then you can do all of the activity descriptors involved in daily living. I was turned down for PIP and had to challenge the decision. The short-term award I did get on mandatory reconsideration has meant that I have to go through this claiming process 18 months later, explaining all over again how I can be employed yet still find it difficult to engage with other people face to face.
If you do become more unwell while at work, whether caused by work stress or personal issues, then there may be no support to prevent your job loss. Large employers usually have an outsourced Occupational Health service but this tends to amount to advice for the employer about when the employee is likely to return to work. There is no advice directed towards the employee about how they can cope with work. The provider used by my current employer is OH Assist, which used to be a division of Atos, the private company which performs benefits assessments on behalf of the DWP. The assessment of the employee’s health and subsequent advice report is done through a brief telephone consultation. The Occupational Health Adviser may be a nurse or OT who has no mental health knowledge, leading to a short and generic report for the employer, which is more of a tick box exercise than a considered specialist opinion. I have had to pay my private psychologist to write a report for my line manager in the hope that it may lead to reasonable adjustments and understanding of how to support me at work.
Many large employers do have an Employee Assistance Scheme (EAP) which is telephone based. My experience is that calls are short, possibly to target times of 10 minutes, unless you wish to access eight sessions of phone counselling. Since the EAP is also outsourced to a national company, there is no familiarity with the employer you work for and their policies. I was overpaid salary of thousands of pounds in error by my employer but had no way of sharing my pay slips with a phone adviser who would be someone different if I called again. The extent of the advice given during 10 minutes about my overpayment was that the employer should be ‘reasonable’. I experienced even greater stress when my employer then demanded in two threatening letters that I repay the total overpayment back in two months leaving me with a nil income for those months. In fact, the overpayment recovery deductions set amounted to more each month than I would have been paid. I had to use my annual leave to see a local Citizens Advice to figure out how to respond to the overpayment that wasn’t my fault though still needed full repayment.
Job retention support is non-existent despite the way that work is a policy priority in mental health and the Five Year Forward View. I approached the Shaw Trust and was told that they weren’t commissioned to provide job retention and the only way they could help me was if I gave up my job to look for another. I have seen the Disability Employment Adviser at the Jobcentre and was given a leaflet for an NHS funded Improving Access to Psychological Therapies service offering six sessions of web chat and was told that Access to Work wouldn’t cover anything for mental health except taxi fares. After much internet searching, I found Remploy, funded by Access to Work, has a Mental Health Support Service. I self-referred to this service and understood that there would be six months of support. I later realised that the support was telephone based whereas I needed someone to come with me to meetings with senior managers at work. Remploy is in partnership with Maximus, which is another private company that provides benefits assessments for the DWP.
Two weeks after I self-referred, a Vocational Rehabilitation Consultant phoned me and offered the only face to face meeting I would have in six months apart from a 13 week review he said could be done in person or over the phone. He made clear that he was fitting me in on his way by train to another client. His office address is over 150 miles away from where I am based. During our meeting lasting half an hour, he asked my diagnosis and when I said it was ‘Borderline Personality Disorder’ he suggested that I was a ‘complex lady.’ He said that he had other clients with BPD but they did not self-harm and he knew how with BPD one day he may be my best friend and the next day my worst enemy. I tried to explain that I didn’t experience this perception and found such a stereotype offensive. He had emailed me a lot of leaflets produced by Mind in advance of this meeting and asked if I had read them yet. I was in crisis, attending A&E for wound repairs, so reading the leaflets was the last thing on my mind.
My personalised action plan from Remploy stated that the “reading resources were provided to help her better understand anxiety, depression and self-harm so that she can try to develop coping strategies to better manage her mental health.” He drafted a letter to my manager which I had to ask him not to send since it stated that she was the cause of my anxiety! When I gave feedback that the leaflets were too basic and his service didn’t meet my needs he replied in several emails saying:“We deal with individuals who have mild to moderate mental health difficulties who are already in employment and do not require intensive support. I feel you are not benefiting from the mental health support service (MHSS) which Remploy deliver as it provides a much lighter touch as I think you require a level of intensive support which is not designed into the MHSS as it is not designed for that purpose.” He never suggested where this intensive support should come from. I still have to provide him with monthly updates until the end of the six month support period, even though I have withdrawn from the service.
My employer does have Mental Health First Aiders (MHFAs) who can be approached in the same way that an employee could ask for physical first aid if they had an accident. These MHFAs do have two days of training. I believe that staff with the right qualities training as MHFAs can be a helpful resource in the workplace though their role is to listen, signpost but not to give advice. However, it isn’t easy to approach MHFAs you know as colleagues. While the conversations are meant to be confidential I do have a doubt about whether I may regret being open if later interviewed for a promotion by a colleague who is also a MHFA and may see me in a different light. I have not managed to tell any of my colleagues about my diagnosis as I am sure it would damage my career prospects. There are so many negative articles online about BPD that a manager would only have to look at the wrong Walking on Eggshells type web page to form a judgement that the employee was a problem.
In several places of work I have heard colleagues use what they call ‘gallows humour’ about customers, such as saying those who self-harm seek attention, that it was a waste of resources that an ambulance helicopter was called out for a resident who had taken an overdose and that they wished one of their clients would get run over by a car as he served no useful purpose as a drug addict. I still hear where clients are called ‘manipulative’ as though this is definitive. Even though the colleagues are not talking about me, I start wondering what statements they would make if they knew that I was a frequent user of A&E, covered in scars under my long sleeved shirts and trousers. I want to educate them on the distress behind mental health issues but don’t want to reveal too much about my own history that they either feel sorry for me or form a different opinion other than one based on my strong work ethic.
There is the isolation of being single and in work (I have no family to provide for despite what was suggested by the speaker at the workshop). I have no-one to turn to after a long day in the office where I may have experienced conflict, stress or bad news, for instance there is an imminent restructure. It takes me several hours in the morning to psych myself up to go to work and once home I have no energy left. I eat something simple like cereal, having snacked for most of the day due to my anxiety, I then phone my surviving elderly parent and go to bed. The events at work and whether I said the right thing or have forgotten any task go round in my mind inhibiting sleep. I know that the next work day offers more of the same routine, perceived criticism, uncertainty and self -doubt. Working has created distance from a few friends who think that it is alright for me now I have work and don’t have to worry about work capability assessments. Government policy pitches disabled people against each other. We compare ourselves and who needs the rationed resources more since benefits and services were cut as part of austerity measures. I also feel I have no energy to talk to these friends about their encounters with mental health services when I just need total rest after forced company in the office. I don’t feel like using the computer or answering the phone since I fear I will have no resources left to go into work again.
I often feel like a disaster survivor unable to tell my colleagues what has happened to me through iatrogenic and personal traumas. My world is clearly not theirs. I share in their news of families, childcare arrangements, children’s exam results and their own career promotions. I don’t say how unhappy and empty I feel inside or that I won’t see anyone over the weekend as otherwise I wouldn’t recover to see them again on Monday.
If work is good for you, it should be good to you as well. Work needs to be with a supportive employer, have a benefits package with well funded employee wellbeing resources, open minded colleagues and local NHS and voluntary sector services that don’t exclude the ‘high functioning.’ There should be a raft of supports that are concerned about job retention and not just a job placement, job done approach. Voluntary work should be valued as a meaningful and important part of life for those whose mental health condition means they shouldn’t be pressurised into work to targets or to keep the welfare bill down. We need to work together as allies, those in and out of work, to make sure our voices are heard and that work is chosen, decently paid, healthy and fair.