The UK Government is proposing the biggest cuts in history under reforms to the benefits system, they are claiming Individual Placement and Support (IPS) will offset lost benefits for many, with the stated aim of getting people into work and simultaneously tightening eligibility criteria for benefits, like Personal Independence Payments (PIP). One of our members who has deep experience of IPS writes about the reality:
“If you want to work, you can work.” This was the mantra of my first IPS Employment Specialist at the mental health trust. She was forceful, blunt, and unrelenting in her conviction that I could land a full-time job in record time and in so doing, of course, she would meet her target. This is what I wanted to hear.
Work, or rather, the lack thereof, has always been my Achilles Heel. My career in International Relations meant everything to me, and by everything, I mean it defined me. I was making a difference. My international projects were making a difference, particularly those in the countries most affected by Chernobyl. I worked crazy hours, put myself in danger marauding round the exclusion zone collecting soil samples to be tested for radiation back in the UK. I took my annual leave and used this to monitor my projects overseas. I WAS my work. When I was diagnosed with PTSD after the sudden deaths of colleagues in Belarus while working on one of my projects, I continued. My doctor desperately tried to get me to go off sick as my toxic, bullying employer was already driving people to burnout and breakdown. But I continued. I continued out of a sense of duty to the people I was helping through my work. I continued as without the words on my business card, I was nothing. I did not exist.
In the end, I had no choice. I had become so unwell through a combination of PTSD and self-medication with alcohol, that the inevitable happened. One day at work, I was at a management meeting. I was asked a simple question about one of the projects in Zimbabwe. I suddenly realised that I had ceased to care. I still had enough self-awareness to know that something profoundly wrong had happened to my personality. I knew the real me cared deeply but she was no longer there. She had been extinguished. I left the room, packed up my desk and walked out. I was to be signed off work for a year on full pay during which time suicidal depression, self-neglect and self-medication with alcohol meant that I nearly died more than once.
After a year, I was retired on ill health grounds at 32 – an age when most people are only just starting on the ladder towards a successful prosperous existence. Devoid of my identity, I unravelled. It all went. My purpose. My home. My health. My sanity. I fell into the Twilight Zone, disconnected from reality and from myself. I found myself homeless in London and I jumped on the merry-go-round of hospitalisations, in an out of grotty B&Bs and dangerous hostels, being preyed on by people taking advantage of my vulnerability. I was stabbed. I was raped. I was abused. I still have scars, both mental and physical from this time. The original trauma had long since diminished into insignificance. New layers of trauma were being added all the time.
Early after discharge from my first long admission to a mental health ward, I stumbled into a meeting of my local branch of Mind. It happened to be about employment and was addressed by Doctor Rachel Perkins, a leading proponent of the Recovery model and very much of the view that Recovery and Work are bound together. She was convinced that people like me could work and indeed should. I believed her. Years after that first encounter, I did some work with Dr Perkins. I clearly remember her assertions that “everyone should be on work-related activity”. I recall wondering whether she meant people in comas or dying. Sadly, I believe when she said “everyone”, she did indeed mean absolutely everyone.
A lot of water has passed under the bridge since I first fell under the spell of Fairy Godmother Rachel Perkins who waved a wand so that I would triumph over these inconvenient mental health glitches that almost kill me every time they hit me, and be transformed into an active, valued, and tax-paying member of society.
I have been in the main dependent on Benefits since I lost my career and my health in the late 1990s. Since then, I have tried so hard to get back into paid work. I have voluntarily gone on every employment support scheme going. I have had voluntary roles but even those I could not sustain. I had a period working freelance but even then, I yet again experienced workplace bullying and ended up going through more breakdowns. Rather than being “workshy” I tried so hard to continue working even in extremis. I would work from hospital wards. I wrote articles on ward computers. I even had a business suit in the wardrobe in my room in the mental health unit so I could break out and attend work-related events.
Anyone with even the scantest knowledge of how my mental illness ( I make no apologies for calling it what it is) could see that could see that I am not able to sustain employment for any length of time. My health fluctuates to such extremes that it feels like there are two versions of me – the one who can appear utterly together and ready to take on the world, or the other who implodes and becomes so unwell, so neglectful of herself, that hospitalisation is the only outcome. I have shown this repeatedly.
So once again I was in a familiar state of feeling like an abject failure while I was having art psychotherapy – one of the few therapies that has had a positive impact on me. It had taken a couple of years to get the referral, but it had eventually happened, it was working, and I started to feel “normal.” This is where the red warning light should have come on. Often when I feel and appear most ‘normal’ it is when I am most unwell. My art frequently reflected my sense of guilt for not working. I asked my Art Therapist if I could be referred to an Employment Specialist. I was amazed to hear back very quickly and there I was, sitting with this bullish and buoyant IPS Employment Specialist who was a similar age to myself and who categorically assured me that I would get a job. I would be rushed into employment, and I would have tailored support to ensure that I was able to sustain that. I should have remembered that if something seems too good to be true, then it is.
The first job I went for was in patient engagement in a Mental Health Trust. After a very pleasant interview, I was advised that I was far more suited to a more senior role and that they would be back in touch with me when a vacancy came up. The second interview was ironically, for an IPS Employment Specialist role within the very Trust whose IPS service I was accessing. My Employment Specialist was utterly convinced that I would get one of the roles going and that, what fun, we would soon be colleagues. She coached me for the interview telling me in no uncertain terms that I must not say anything negative, that I must maintain an air of positivity throughout. She said, “if anything, you have to be extra positive.” I wish I had listen to the alarm bells as surely, something this “ra ra” in nature would have to be completely inappropriate for dealing with the complex issues of many if not most, people in secondary mental health services. Too lat. I Had been enculted like an attendee at an Amway pyramid selling rally.
The interview was a disaster. Most of my professional experience comes from using my lived experience of mental health issues, of homelessness etc. as the foundation for academic study then my freelance consultancy work. I knew the Trust involved had pioneered “lived experience professional” roles and in fact I had been involved at the very outset of discussion on this as a service user representative. It did not occur to me that unless a role was advertised as being a “peer support” role of some kind, I would not be able to use my lived experience. I delivered what I thought was a first-class presentation and was pretty satisfied by the lunch break that I was doing well. I was taken aside by the IPS manager who was conducting the interview and advised strongly that I should stop alluding to my lived experience as I would not be able to do this in an IPS role unless it had “peer” in the title. I was blindsided by this. I knew that I would not be able to do the job if I had to keep one hand tied behind my back. I had been so buoyed up by the conviction of my IPS specialist that I would “ace” (her word) the interview, that I allowed myself to believe that my days as a “benefit scrounger” were over. I broke down in tears. The manager uttered something like “no need to get upset, Darling…” and that was the final straw. I cried my eyes out in the toilets and reached out on social media for support from my network. I finally managed to pull my fragments together to put a fragile mask back on I emerged to pretend to the other candidates that I was fine as I did not want to worry them. I forced myself to go into the room for the second part of the recruitment process, a one-to-one interview. I have no idea at all how I got through it. I left with one of the Peer Support workers who saw my distress Tweet and took me to a café to provide much-needed support.
So, it was back to the drawing board. I arrived for an appointment with my Employment Support Specialist which I hoped would help me to look at what had gone wrong. Gone was the over-the-top positivity. It was clear that I had blotted my copy book. I found myself, instead of being supported, being berated for taking to social media to look for support, although I had not mentioned anyone involved by name or indeed where I was having my interview. My sole motive was to try to get help as I was locked in a toilet in a state of complete emotional meltdown. However, she lectured me on bringing the Trust into disrepute. It was a shocking tirade. I walked out, again in distress.
At this stage I submitted a written complaint to the Trust. It was suggested that I rejoin the IPS scheme but with another specialist. I met him and he seemed very pleasant but only doing the job part-time as he was training to be an art therapist. very quickly got another interview which took place online. A couple of weeks later, I was telephoned to say I had got the job. My immediate reaction was to say, “are you MAD?” – only half joking. At last, I was going to be “normal,” that the decades of struggle in and out of health, of instability, of zero self-worth – had ended. This IPS thing was obviously magical. It sprinkled fairy dust on my troubled meaningless life and told that that I was going to be allowed to go to the Ball. In my euphoria, I had forgotten what happens to Cinderella at midnight…
Dressed in my new outfit provided by the charity Smart Works which gives clothes to women who are returning to the workplace, I looked “normal.” I could even convince myself that I WAS normal. They gave me an NHS ID badge. This had to be it. I had a badge again with a title on it. I was a “Social Prescribing Link Worker” for a Primary Care Network. I was given a laptop and phone. This was it. I was back. Why did the anxiety grow rather than dissipate? Why was I having nightmares already in week one?
To begin with, I put my anxiety down to understandable nerves after all, my last regular job had involved people dying and my own health being ground into nothing. I had weekly meetings online with my line manager and the IPS Employment Support Specialist. At first these went all right. My manager assured me I was doing fine. The employment specialist too assured me I was doing fine. Increasingly, however, I was NOT doing fine. I had started to feel completely exhausted. My eating became disordered. I would collapse on my sofa as soon as 5pm came. I was working from home so I would fall asleep for three hours as soon as I felt I could log off. I felt paralysed. I was too terrified to make phone calls. I had always been phobic of phones, but it became acute while at work. I was struggling to manage the IT. The use of jargon made me feel as if I had been teleported onto another planet. I was not pulling my weight. I kept bursting into tears. I had to leave so many rooms as the noise was overwhelming me. I felt a strong need to punish myself for being the dead weight in the team – the token ‘mental’ in the room.
And worse than that, I started to feel for the patients. Many of them were being passed around from pillar to post and then dumped on me as a social prescriber as the GPs had no time to deal with their complex issues. I identified with them. I would read their records and see that they were being neglected in the same way I had been. That was when the flashbacks started.
The tone of the cosy chats between me, my manager and my Employment Support Specialist started to change. Although couched in touchy feely management speak, the meetings became unpleasant. I was reprimanded again for using my lived experience at work. I had been trying to advise colleagues why, in my experience, patients might react in a negative way towards something they said or did. I illustrated this with my own experience. I was told that this was “triggering” for the team. At this, I was furious. I genuinely believed that my young inexperienced colleagues would welcome my input, but my manager did not think so. The Employment Specialist could see that I was distressed by this but the only “support” he offered was to advise me to “draw a picture of my anger.” That was it. Nothing else.
That weekend, I had started to dread Monday from roughly 10 am on the Saturday. The anxiety built up and built up. I attended my usual online AA meeting, and I told them I was worried about my health. Later that night, I knew. I just knew. I knew that I could not continue working there.
The next morning, I phoned in sick. Almost immediately, there was a combination of deep relief, but this was quickly replaced by guilt and a desire for self-punishment. I had proven finally that I was a failure. On paper this was a job I could do with my eyes closed. In practice, I was in a permanent state of terror, had flashbacks when awake, and nightmares all night.
I was back in a very dark place again, darker than it had been for many years. As for the “support” – one might have expected given the fact that I was by now becoming seriously unwell, that the support would be heightened. In fact, the reverse was true. It became noticeably clear that I was now a “failed placement.” It did not help that the Art Psychotherapy had ended due to the long-term sick leave of the therapist. She had come back then gone away again as quickly as she arrived. I had a perfunctory call from a senior member of the team that covered Art Psychotherapy and Employment Support, advising me that the therapist was not going to be replaced, and I was to be discharged. I was at this time a suicidal wreck, but the response was to send me as quickly as possible to a familiar place – out of sight out of mind.
As I was therefore summarily discharged from secondary mental health services, I was no longer entitled to use the Employment Support Service. What this meant for me was that I had to negotiate the fallout from the “failed placement” and somehow get myself back on Benefits. I was submitting sick notes despite knowing that I would not be going back there. I would have preferred to take my own life than go through that excoriating pain of sitting at my dinner table with my laptop meant to be working my way through lists of patients but feeling absolutely paralysed mentally and physically. In short, I was on my own.
I am still not fully out of the woods. The whole episode has meant that I have had to restart my Benefits claim from scratch and the DWP refuse to use the information they have on file for me covering many years of being on Limited Capability for Work Related Activity. The impact of this means that I am having to go through the gruelling assessment process again which means living on a lower “assessment rate” of Benefit and having to supply sick notes as if they have never seen me before.
I regret the day I got sucked into the rainbows and unicorns’ world of IPS. The theory is great. The IPS Employment Specialist will be “embedded” in the clinical team. The problem is, there was NO clinical team. There was an invisible Art Psychotherapist who was long term off sick, and besides the part time Employment Support worker, there was no other support whatsoever.
My own research into IPS, conducted when I was being urged to apply for an Employment Specialist role, showed a worryingly cult-like culture. I read that IPS staff must show their “compliance with the brand” and that the brand is all about positivity, even when there is truly little to be positive about. The roles are also target-driven. Is it any wonder that the specialists attack the work with the zeal of a timeshare salesperson?
Of course, my experience may not be typical. I am sure there are some who are placed in appropriate roles at the right level, with the right support, and can sustain those jobs. Lucky them. My suspicion is however, based on the speed at which I was jettisoned from services after I became a ‘failed placement,’ that there is no room for failure in the rictus-grinning positive world of IPS. It must muck up the stats no end to have people start a job then end up becoming more unwell than when they started. It felt like someone pressed a button on the waste disposal chute and down I went, into the skip where the failures lie in a groaning heaving mass, no longer presenting an uncomfortable truth – that IPS may well work for some, but for others, it is dangerous, deeply damaging, ending up in increased costs to the worthy taxpayers due to having to pick up the pieces of the shattered failure on the floor.
These days, it seems certain that even the barest minimum of support for mental ill health will be tied up in some way with the “work cure.” Those of us on the scrap heap where the “failures” are dumped, unless we again climb out of the pit and show willingness to try repeatedly until we eventually peg out altogether, have no significance, no rights, no consequence, and no future. I have devoted myself to making my life matter by doing what I can to help others even while dangerously ill myself. I was named one of ’50 Inspirational Women in the UK’ for achievements largely outside paid work, done voluntarily because I care.
Now it seems, I am ‘economically inactive,’ my diagnoses have been doled out too readily and there is nothing wrong with me at all. I am a shirker, a scrounger and a feckless workshy wastrel. And all this scapegoating is meant to motivate and empower me into work.
I may not have much self-worth left, but even I can see that I deserve better. We all do.
Recovery in the Bin 