Individual Placement and Support (IPS) – The Miracle Cure? 

A colourful rainbow childs graphic surrounds a still showing two joyous people form the Shiny Happy People POP video

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.

It Costs More to be Disabled, Whatever the Government Says.

A lovely Romantic image of IDS and Liz Kendall surrounded by lace and alert holding a defunct half penny coin.

We asked members and followers about their mental health disability costs, whether in work or in receipt of ESA, UC, PIP. This is what they told us:

  • “Paying for support the NHS no longer offers” 
  • “Needing to throw out £15 worth of food because voices have changed or ruined it some way”
  • “Needing cabs because public transport causes too much anxiety”
  • “Needing a lot of cleaning products because of OCD or eating difficulties”
  • “Wasting money on fresh food and then being too unwell to cook and buying takeaways is the big ongoing one. Paying for therapy so I can get therapy that doesn’t harm me. Paying for help with cleaning/organising/ although I don’t currently have any help with cleaning.”
  • “For a child – paying for assessments and reports and legal representation to get health and education needs recognised and met.”
  • “Paying £1000 for ADHD diagnosis and then running out of money to títrate properly because the GP wouldn’t accept shared care. NHS psychiatrist diagnosed ADHD but wouldn’t prescribe stimulants. The GP tried to internene to help me and the psychiatrist told the GP she didn’t want to prescribe ADHD stimulant medication to a woman in case they try to use the to lose weight. So years of lost income due to burnout and trauma of undiagnosed, then diagnosed but unmedicated and unsupported ADHD and complex trauma. The true financial losses cannot be fully calculated, but I am costing the state far more now, and will continue to do so, than if had adequate therapy that recognised the full extent of my trauma and helped me in a knowledgeable and supportive way, ADHD diagnosis, medication and support around executive functioning early in my life.”
  • “Throwing food away as I’m full of good intentions when I buy it but really struggle when it comes to preparing it due to depression and ED. Plus a lot of food goes past it use by date as I’m 100% reliant on deliveries. Carers won’t actually “cook” just microwave meals.”
  • “Paying for delivery charges from food to clothes, Amazon etc. currently can’t leave the building in my own let alone visit shops. (Full time wheelchair user living in an unadapted home)”
  • “Extra heating costs as in home all the time and can’t move around to keep warm as in in a wheelchair.”
  • “Taxi fares-hospital appointments, dentist, anywhere really. Last week I spent £60 on taxis just to get an Xray done.”
  • “Chiropodist at home.”
  • “Hairdresser at home which I feel really guilty about as “no-one sees me anyway)
  • Care alarm £30 monthly”
  • “Subscription to Amazon Prime as I can’t deal with random deliveries (PTSD ) and the prime videos provide a much needed distraction.”
  • “Monthly contribution towards my motabilty scheme power chair ( £100)”
  • “No energy to cook at times so dependent on expensive deliveries. I forget to put stuff in the fridge. I forget I’ve even bought stuff. I feel embarrassed even writing this stuff”
  • “I find the whole throwing food thing super distressing- voices telling me to think about starving people all over the world including UK underscored with food bank statistics and the scrounging benefit claimants rhetorics. The voices play a whole goddam symphony on this one!”
  • “Uber one for cabs, food deliveries, courier service etc because I don’t get out easily”
  • “Yarn and knitting stuff to stave off depression and anxiety and boredom”
  • “Therapy online that helps me”
  • “Support for cleaning/organising/divesting (hoarding) not covered by social care”
  • “Paying for taxis for partner to get home from work and back again during the day, (not including going to work and coming home) to provide support”
  • “Paying for takeaway when I’m too unwell to cook, or have been too unwell to get to the supermarket/place a delivery order for groceries so there’s no food in.”
  • “Paying for train travel to see family and friends then being too unwell to go that day and too overwhelmed to change the ticket (when that’s even possible).”
  • “Paying for the heating to be on a lot more so my energy levels aren’t worse than they would be without it (which would lead to a domino effect wherein my activity levels drop, so my mood and focus drops, so my ability to do other things that help kee p me well drops).”
  • “Years of lost income is something I always forget to include because work has been so impossible for me for so long due to inaccessible workplaces, inaccessible working conditions, inflexibility and punitive nature of the benefits system, and lack of access to good care under the NHS. Some of that couldn’t be helped, it’s just a feature of having several conditions that interact, but I am absolutely capable of some small amount of paid work, just not under the conditions that are made available to me, not without coming to harm and eventually burning out again and becoming more ill than I am now.”
  • “Delivered food because prep is not possible. Things having to be thrown away due to contamination”
  • “Debt – depression spending or manic spending, or spending related to attempting to acquire a lifetimes supply of non-perishable essentials in fear of the next review
  • *Paying for physical healthcare diagnostic tests or treatment because of diagnostic overshadowing ie all in your head, it’s ‘just’ anxiety, or you’re too ‘risky’ for a treatment by virtue of MH
  • “Paying for extra food or specialised because of ED”
  • “Paying for extra cleaning products or clothing because of OCD or ED”
  • “Paying for injury dressings”
  • “Paying for advocacy no longer available”
  • “Cabs because public transport causes panic”
  • “I pay £120 per week to see my (incredible, life changing) autism-informed ex NHS clinical psychologist. it eats all of my PIP, leaves absolutely nothing, but her approach, experience and expertise has helped me more in four months than CMHT has in 13yrs”
  • “Decent noise cancelling headphones to make going out in public manageable. Unfortunately the media would file this under ‘flat screen televisions’ in the list of things we shouldn’t be allowed to scrimp and save for.”
  • “I pay for physio. The NHS physio isn’t working. I even asked my orthopedic team who they would recommend and I pay for it. For some reason NHS physio isn’t fully trained in my hip problem.”
  • “I am also paying for some blood tests because some of my physical health is being out down as mental health issue. Even though previous bloods have come back abnormal”
  • “I’m in Canada, so maybe not relevant but Ive been priced out of treatment for my life long MH issues. Therapy: $200/session, Doc rec’d EMDR: $1000/month for 2 sessions. My disability cheque only covers rent and without effective treatments, working for the extra is a pipe dream.”
  • “I’m lucky that my therapist doesn’t charge extortionate rates but I pay him approx £300 per month. If I need to see a psychiatrist (which I do reluctantly), it’s £200+ for approx 10-15 mins”
  • “Paying for long term care such as therapy but also holistic treatments like theraputic massage etc to help with pain, stress.”
  • “Bath wipes, no rinse body cleanser, shampoo etc for when showering isn’t possible. Expensive compared to regular versions.”
  • “Healthy food is also really essential for wound care.”
  • “My disability costs me on average £400 more per month than someone without a disability. I’m not listing all the costs publicly. I don’t claim any benefits because I don’t have the spoons to work and fight for PIP”
  • “Stress induced psychosis spending on fixing things that don’t actually need fixing! Also heightened vulnerability to scams”
  • “Lack of energy or fatigue – results in paying people to do things which you could do yourself if you were not fatigued, depressed or lacked energy Also executive dysfunction. Causes massive costs – bank charges and fines just one example (not remembering or missing things)”
  • “Games because a game world makes sense when that world out there never does, Audible books so I can function around the house, VR and technology to leverage my affinity and allow me to exist, mobility scooter so I can leave the house without becoming non functioning.”
  • “Witnessed people having to throw food away eg as they haven’t been well enough to cook it, store it safely, forgotten to eat it, had no money to top up the electricity to cook it, or items eg washing up liquid to wash pans safely and no money to replace cooking utensils ….”
  • “Pain, psych and other meds not available on NHS so have to pay hundreds of extra costs in private prescription EVERY month. 4 months after sudden deaf, no help from NHS ! Have to get private consultation and therapy. Costing £1000s, now crowdfunding. CFS so need ready meals”
  • “£40 a week for a cleaner as I can’t manage it anymore £80 on a dog walker to help on my bad days, £50 on private health care to assist when the nhs refuses to treat me as too complex £160 a month chiropractic treatment That’s before easy prep gf food etc”
  • “Paying extra rent for a ground floor flat Being so ADHD/BPD I don’t even know my budget and what I’ve spent Paying for cabs because exhaustion Higher energy bills because I’m home all day Paying for massages because my body seizes up”
  • “Extra costs because you can’t shop around, can’t access discounts, can’t remember reward cards, get sold bad deals. I had a friend who ended up with two mobile contracts because the first network didn’t cover her area.. sold in person by same shop!”
  • “Clothes and shoes bought that don’t fit, but because you then have a bad patch, you comprehensively miss the return window.”
  • “My private prescription is £120 per month. The NHS says it will take over the prescription once I’ve seen their specialist – I’ve been waiting over a year – they say it will be at least another 6 months, maybe more!”
  • “£120 a week for psychologist counselling sessions as the nhs mental health team in Northamptonshire doesn’t know how to deal with me because of my physical health I don’t fit their regimented thinking. I get 1/4 of my pension (as I was too young to be ill) and pip”
  • “Not getting paid for actual work, either because you forgot to check if it was paid work when you agreed to do it, or because you can’t actually manage to invoice the work or expenses.” 
  • “Not getting an equivalent rate of pay to a non-disabled person”
  • “trauma therapy, supplements to help my brain and body cope with the strain of trauma and work more normally. Extra delivery charges when I can’t go out. Care charges. Cost of mistakes … getting scammed when vulnerable or impulsive”
  • “Transport is a big one. And food too, executive dysfunction makes it difficult to meal plan. Dressings, self help workbooks, cleaner, handyman and gardener, OTC painkillers and supplements, ear plugs, eye masks, weighted blankets and cushions, fidgets, sensory friendly clothes…”
  • “Daring to buy something new to eat[YUK ready meals] but too-long & stringy meat/poultry fibres/veg skins in it so choke when swallowing, or such strong YUK fake taste =gag, so bin it=cereal & cheese yet again for eve meal. Forgetting food [incl planning probs]so goes out of date.”
  • “Paying the rest of my wages because I’m only able to work part time”
  • “I use my PIP for private EMDR therapy. We’re presently processing traumatic events from my time in NHS mental health services”
  • “Standard open rail tickets, as advance tie you to fixed trains and you don’t know how fast you will be able to do a transfer.”
  • “Ready prepped things like veg because I can’t use a knife safely. All the different gadgets I buy that should help but turn out to not”
  • “Private assessment/diagnosis for complex dissociative disorder unobtainable via the NHS. Pet insurance (owner trained mental health assistance dog).”
  • “Spending weeks sorting out things because What they vs. What actually happens is as different as different gets.”
  • “My son is always throwing food out because it ‘smells off’ . It costs a fortune to replace.
  • Receive PIP. – electric bill because of long OCD-related showers. Also when depressed become too exhausted to get ready for bed so fall asleep on floor/with lights/heating on – dental treatment following not brushing my teeth when depressed – pre-payment certificate for meds”
  • “I’ve been paying for private therapy since 2018 because i gave up on the NHS after repeatedly being told that they couldn’t help me and on more than one occasion let me check myself out and wander out of A&E into the night after presenting myself as actively s**cidal”
  • “I’m not safe with a kettle due to SH, so I had a hot water dispenser which I accidentally killed last week and had to replace straight away. No waiting for the sales.”
  • “food goes to waste because i forget it exists. i lose things and forget i had them and buy more. i spend more than i should, perhaps on like hobby stuff because i am disabled and stay at home a lot, trying to find ways to stay busy and not let the brain worms win. someone else”
  • “Using gallons of hot water /heating to bathe a skin condition multiple times a day. Needing cotton clothes, which are getting rarer and more expensive Buying hibiscrub and dressings because my GP won’t prescribe them.”
  • “I end up throwing food away too – and beating myself up about it because food waste is “bad”. Can’t get an ADHD diagnosis because of how expensive it is and can’t face the hassle. Therapy is the big cost for me.”
  • “Throwing away food because I’m too distressed or confused to prepare it. Then ordering takeaway or delivery food. Replacing things that I have thrown out because I believe then to have been contaminated.”
  • “Therapy a big one as NHS doesn’t offer long term everything is in 6 or so sessions. Heating bills as feel the cold. Dressings at times. Ready meals and select foods. Private assessments for neurodivergence as 3-7 year wait lists. Private dentists as feel criticised by NHS dentists (even if available) making comments about acid erosion from eating distress history”

Current political and media messaging is suggesting that not only are people faking their conditions, but even if genuine they have no associated additional costs. The cost of living for people with mental illness/distress is no less pressing than the extra costs for people with physical illness or disability; benefits are essential to support a basic, acceptable standard of living.

Continuing austerity will simply mean worse lives and more deaths. It is most explicit in the growing presence of fascist groups, but on Social Security the consensus across the established political and media community is barely different: The society they envisage does not include us.

An Epistle of Cruelty: Life in the parallel shadow penal state of the DWP

RITB admins put out a call for testimony of what life is like living whilst receiving DWP benefits. It was painfully clear that many survivors are now afraid to speak even under pseudonym. People are silenced, and they are terrified of being noticed by the State apparatus. Therefore a Content Notice on these testimonies as they include distressing detail of bureaucratic violence, harm, and distress.

The Daily Telegraph and The Jeremy Vine Show recently put out messaging that is distressingly reminiscent of Nazi propaganda. Recalling the co-ordinated media activity of the Osborne era where scrounger rhetoric was used to make harsher and lethal policies acceptable under austerity. [Please read this letter collected by Jay Watts].

The treatment and stigmatisation of claimants is similar to the vilification of refugees. We should always act intersectionally and support each others struggles, and never fall for divide and rule messaging or pitting one groups rights against another’s. Whilst citizens do not face being drowned or rendered to Rwanda, some have had their citizenship removed and been deported, fulfilling the fascist National Front of the 1970’s policy demands. Political parties win votes competing to be crueller to both. No political party represents either group in a humane way. New Labour’s Immigration Act 1999 removed recourse to public funds for people ‘subject to immigration controls‘, the slow removal of benefits from disabled people suggests a similar policy aim, but being hampered by human rights law, disability organisations, and public opinion; the famous problem of democracy Thatcher lamented to Pinochet.

We now also have a political and media campaign against Trans people, with the country’s Human Rights organisation, the Equality and Human Rights Commission, being manipulated to now support the removal of human rights, to the alarm of the United Nations. The hostile environment while acknowledged openly by government in respect of refugees is less explicit for other demographics, but nevertheless we can feel the enmity.

The recent footage of a 6am DWP & police raid and increased whipped up hatred towards claimants has deeply distressed many people:

The following testimony is collated from a wide range of individuals who responded to our callout, they offer a snapshot of the impact on health of being a claimant. Of what it is like living under the parallel shadow penal state of the DWP-

  • “I cannot talk about it here. I even have the thought they might see through my alias and work out who I am and punish me”.
  • “I know that I only deserve to live if I’m employed, that’s the message”.
  • “The two most vilified groups of people in the UK for political purposes are refugees and claimants. Those groups are despised. We are subhuman”.
  • “If the Bill is passed, job centre staff will be deciding who’s fit for work with the threat of sanctions. I’m stockpiling medication, I won’t survive”.
  • “As a too ill for employment disabled person I have survived solely on ever decreasing and hard to get so called social security for most of my adult life, spanning decades of so called welfare reforms, cuts, austerity, and recessions. Family tax credit, Job seekers allowance, Incapacity benefit, income support, disability living allowance, ESA, PIP and soon to be UC. I have a life threatening an ever growing fear of the DWP”.
  • “Disability fraud in social security is 0.2%, the media portrays it as 98%”.
  • “An assessment centre is referred to as The Kremlin”.
  • “The impact of DWP processes and their media has had a direct impact on my mental health to the degree that I would rate it worse than my illness, worse than being sectioned and forcibly medicated, worse than being stiched with no local anaesthetic, worse than surviving a suicide attempt. It has become enmeshed into my depression, paranoia, voices I hear, the feeling of being a target for anyone’s malicious reporting, feeling constantly surveilled, under house arrest.
  • “I sometimes hear my thoughts in the voice of Ian Duncan Smith and my voices blame me for being in this position. They say outside “they’re proper people,not scum like you”.
  • “If I were offered fast painless euthanasia, I would take it, to be free of living in fear”.
  • “I hate post, all envelopes, I feel sick at the sight of them and have vomited at the sight of envelopes I suspect are from the benefit offices. Sunday is the only I can breath – no post – but it means I’m afraid to leave my home to stay with family or friends because I fear receiving a letter or form which needs immediate attention. So I feel a prisoner in my home and afraid of leaving it for longer than 24 hours”.
  • “I know that the DWP have an algorithm that targets people for benefit fraud. That they can covertly use, physically surveillance, data from airlines, supermarkets, online purchases, CCTV, audio recordings and phone conversations, monitor bank accounts and social media searching photos and locations and encouraging neighbours to don claimants in…. all to try and prove people are lying. This all has a profound detrimental effect on my mental health and I’ve done nothing wrong”.
  • “I looked up how much you get for selling a kidney or a lobe of liver thinking of if after the general election and proposed Bill removing the WCA letting job centre staff decide who’s fit for work or not, i know I wont survive it. I was disappointed to learn that organs don’t sell for that much”.
  • “I tried to end my life during a DWP assessment process a few years ago which resulted in me being detained under the MHA.  One of the reasons I haven’t walked away from the iatrogenic harm that MH services cause me is because it would be even more difficult to prove I am ill and get enough benefits to survive on if did”.
  • “I used to be an activist, I did unpaid work which was valued by universities, NHS Trusts, nursing & medical schools. I also did work with fellow SUs and groups. I ceased all voluntary work in fear of that being interpreted as being fit for full-time work which unfortunately I am not.”
  • “I was never able to sustain full-time employment, and even consistent part-time work wouldn’t be viable for because every year for my entire adult life I have typically lost about 3-4 months of the year with my mental health. There are few employers who would tolerate 4 months sick leave every year. With voluntary work, it carries a different weight and stress because I know I can step down if I need to, I can space myself and plan to do it during my best months of the year. The irony is I’m more productive doing voluntary work than I am doing paid work”.
  • “Work as a health outcome and a cure has become the neorecovery norm. It’s scary! I don’t take part in any in person direct protest activism after knowing that some disabled activists were shopped to the DWP. I stay anonymous and private on social media and anon at online and in person Mad events because of the fear of DWP spying on me”.
  • “The neoliberal Government and media strategy is to portray benefit claimants as fraudsters, cheats and scroungers this makes me feel stigmatised, stereotyped and underserving. The welfare system is deliberately hostile and cruel. The Government is trying to kill off vulnerable disabled people. They cover up the deaths caused by the system”.
  • “Just filling the form out raises the depression levels. All negative questions. Some impossible to estimate how many hours in a day do u?? Then the interview process, being asked why you haven’t managed to kill yourself yet! Which made me feel even lower, a total failure!!”
  • “I was once accused of fraud when I failed to ask DWP for permission for permitted work of a few hours and for 6 weeks. Years later I got a letter telling me to attend the job centre and I had no clue why. A scary place with security guards at the door. I freaked out so bad when there that I ended up in a crisis house. I’ve never done paid involvement work since. They can even track gift vouchers which are seen by them as earnings. Volunteering can also be seen as being fit for paid work”.
  • “They ignore medical notes and evidence. They ignore the doctors, your specialist. They are only interested in failing you”.
  • “DWP was responsible for the death of my brother”.
  • “Best thing about lockdown 1 was knowing the letters had stopped. Felt as if I could live for the 1st time in years as I wasn’t exhausted by 24/7 in fear. That dread resumed as soon as we heard the letters were starting up again”.
  • ” I’m using the PIP to find private therapy because NHS was bad. You see a lot of benefit stigma as well and that’s pretty rubbish. I feel like a failure and a burden all the time and I don’t tell people usually that I’m on any sort of benefit”.
  • “I dread being asked “what do you do?”, the judgement extends to healthcare even. I avoid speaking to anyone in the supermarket, I stay indoors and take the rubbish out at night”.
  • “I know DWP want me dead, deaths are a cost saving”.
  • “I’m autistic and was in receipt of PIP. Because of how my autism presents I feel I have to be reassessed every time the tiniest thing changes, even if it’s just a fluctuation  rather than a change.  This means I’ve subjected myself to multiple reassessments  as there’s no way of just telling them about the small fluctuation without a full reassessment. The whole process has made me sick with anxiety, not knowing how long it will take, worrying about whether I’ll have to see someone face to face that doesn’t understand my condition.  In my last reassessment they took information over the phone from an unqualified member of staff that wasn’t listed as a contact on my form that didn’t give the correct full amount of information.  Calling the DWP causes me lots of stress and anxiety as I often need the toilet whilst on the phone and get stuck waiting for over an hour.  When there is no position in the queue information it can lead to a lot of uncertainty.  Even though I’ve been 100% honest in my claim i feel worried when I see cars outside that people are watching me.”
  • “The recent DWP advert stressed me out so much I ended up cancelling my claim as I couldn’t go through another reassessment. If the DWP had an online system where you could report  minor changes without the need for a full reassessment it would help to reduce the stress the whole process causes”
  • “I’ve attempted suicide, been paranoid and psychotic and detained under the MHA. I think that there is more threat to my life from the benefits system than anything else. Yet, I’ve read all my clinical notes and I don’t see the fact that the DWP has caused many mental health crises recorded anywhere”
  • “I’m due a PIP review for severe mental health issues. Last time I had a review, I didn’t sleep. I was anxious. Just filling out the form is distressing. This time, I have no supporting evidence for anything because my CMHT have barely seen me and not listened and not helped me. I’ve misplaced my crisis team summary from last time I was under them and I’m too scared to call anyone to ask for any further evidence because I’m fobbed off all the time. The PIP review has me even more anxious this time because I’m lacking the evidence.”
  • “A recent video by DWP was shared on Twitter which featured the DWP minister in a stab vest saying “ We will track you down. We will find you. We have a very particular set of skills” and showed suspects in handcuffs, doors being smashed down and wailing sirens. Watching this video sent me into what the mental health crisis team called a “psychotic episode” and led to a police welfare check and other scary things”.
  • ” I’m using the PIP to find private therapy because NHS was bad. You see a lot of benefit stigma as well and that’s pretty rubbish. I feel like a failure and a burden all the time and I don’t tell people usually that I’m on any sort of benefit”
  • “I’m constantly paranoid my benefits will be stopped. I get very specfic delusions when real bad it becomes part of my paranoia that I’m being watched”.
  • “I think it’s the division that has been sowed by the media, the manipulation of data to present a point of view that stigmatises people”
  • “They don’t like it if you’re on alternative medication and penalise you if you’re not what they consider a high enough dose. It’s like they want you numbed and overdosed. They don’t allow for fluctuations of the conditions”.
  • “Last summer had interview for 4 hrs work which would have been a big challenge but a +ve step for me & I was likely to get the job but I pulled out due to fear of impact on benefits & being reassessed as fit for work just because of doing 4 hrs/week”.
  • “I live in constant fear of assessment & struggle to do new things worrying how they will twist it so they don’t have to give me the benefits I need to live”.
  • “I just exist, waiting for the gestapo to push me to suicide, no hope nothing”.
  • “The process is humiliating and 3.5 hr phone assessment was horrendous, nearly killed me and got to go through it all again in a few months, not even been two years yet”.
  • “If you have a pain condition you’re caught in a particularly Kafkaesque trap because doctors don’t want to prescribe opioids any more but if you’re not on them the DWP don’t believe you have chronic pain”.
  • “The benefits system, especially disability benefits system, is a special kind of hell on earth designed to make us feel subhuman, which is what most people think we are”.
  • “I literally can’t have a romantic partner because I’ll never be allowed to move in with them without losing all my benefits. My condition (ME/CFS with hEDS) is incurable so I will be alone for the rest of my life because of DWP policy”.
  • “Friends & family talk all time about ppl they know who are “fiddling” their disability benefits because “ you can see they aren’t really ill”, they always follow up with “not you, we don’t mean you” & I have to decide again whether to have another rant about invisible illnesses”.
  • “Am not on benefits anymore but I can still feel that fear. The recent video from the DWP brought it all back. The feeling of being watched, never knowing who or when. Being told by a support worker that I was worrying over nothing. Feeling like a fraud and doubting myself all the time. It was exhausting”.

Journal of Social Policy: In-work Universal Credit: Claimant Experiences of Conditionality Mismatches and Counterproductive Benefit Sanctions Published online by Cambridge University Press: 01 December 2020

I’ve been made to feel like a pariah for so long now it has entered my DNA

Despite being on benefits all my life, I still feel hounded by the department. There have been times in my life and I’ve been frightened to leave the house in case somebody anybody reports me for being able to breathe and walk brackets (not that the walking part is a problem anymore )

In 2014, I was I was chosen to carry the Commonwealth torch as part of the games  in Glasgow.  I was nominated for my services to the community in a voluntary capacity. After much paranoia and anxious I decided not to  participate as I was terrified that somebody might to decide to interview me, film  me and upload my details and then I will be reported to the DWP for those very same services to the community.

 I’ve done various bits of voluntary work since I moved to Scotland in 2010. I’ve never told to the DWP. Due to the fear of them thinking this means I’m fit for a 37hr week. Instead I’ve taken the risk of flying under the radar and constantly worrying something I was going to get found out prosecuted for fraud and jailed .  

My peer support worker expenses used to get paid every three months by cheque. It wasn’t a huge amount of money but I had to put it through my bank account and  worried constantly  the DWP would access my account and find me out. I could probably have told them that I was volunteering still remained in receipt of benefits but I wasn’t prepared to take that risk. I also used to lecture in a paid capacity from time to time but couldn’t risk this  and most universities don’t have an alternate way of paying somebody on benefits…

Paranoia of  the dreaded brown envelopes is always there  but especially heightened when you are waiting for a decision on  a new claim or review  . Recently I have a pip review which took 10 months from start to final decision. Every day I dreaded the post only Sunday was a respite They also started to play stupid bastardised and sometimes use white envelopes so nothing was safe! . . You can never rest  because they keep moving the goal posts so any sense of stability is lost..

I was offered , a paid role as a support worker but it was part time and I was terrified about dealing with the DWP. How pomfret would it take for them to sort out a new claim with the daily envelope waiting again.. What if I became unwell again and had to stop working? Would I be believed? What if they dithered over my clam and didn’t pay my rent? Would I become homeless again? I couldn’t cope with that.Best not to rock the already precarious boat!

I often feel wrong in accessing leisure activities as  There is always that feeling I can’t really be that sick if I can go the cinema. Sick people have to be sick all of the time or not at all. that’s how the bastards make you feel. Maybe I’d be spotted having a good time.

The mental health system is set up to make you feel less than, a burden, at it! And if you have a PD  label forget being taken seriously. I have a history of chronic addictions which are often seen as self inflicted and the DWP compounds these internalised briefs. Oh and forget being a single mother: I once had all my disability benefits stopped when I returned home after a 5 month hospital stay with my baby daughter. Apparently motherhood means cured. 

When people ask me what I do that seems like an admission of failure to say I’m “just” on benefits. My worth is apparently based  on my capacity as an earner, a financial contributor. Now I’m  wheelchair bound it’s easier because it’s obvious something is wrong but I spent decades worrying that I wasn’t that ill and that everyone knew it! Or that my obvious problems with alcohol and drugs were seen as self inflicted and a drain on the state. I still limit who gets to know that part of me.,

I’ve asked for increases in medication purely for evidence of not being recovered. I have continued to take high doses medication. I’ve  totally lost track of whether I need it or not but it looks good for the DWP. 

Dealing the with the DWP exhausting and brings up all the feelings of basically not being good enough. Less than, a burden, a non entity. I’m finding doing this for RITB extremely triggering and I know there’s no threat. But what if a binner thinks I’m a fake and have just conned everyone for the past 40years? What if I’ve conned myself? I’ve been made to feel like a pariah for so long now it has entered my DNA.

Further Reading: Deaths by Welfare Project

It was clapping for the NHS that made me realise I had trauma

dark image with light making a silhouette of a face in profile. Photo by Engin Akyurt: https://www.pexels.com/photo/silhouette-photo-of-woman-1446948/

I think it was clapping for the NHS that made me realise I had trauma.

In hindsight of course I knew that what I’d been through was traumatic but I also minimised it, the memories were blurry, and the real stonker – it saved my life therefore I wasn’t allowed to wish it hadn’t happened, that would be wishing I was dead.

That’s the thing about mental health services and sections, they operate crudely, bluntly, they come in too late and too harshly but, by the skin of their teeth, they sometimes just about manage to do the job to the bare minimum standard and because of that remain just out of reach for the full force of a survivor’s anger. 

Or that’s how it is for me.

I care deeply about the provision of free-at-point-of-use healthcare, I would never want my critiques out of context to detract from that and I most certainly don’t see the rise in private day patient programmes as the solution.

Two of the leading of these private services are lead by the two psychiatrists I’m talking about.

I was in and out of hospital for a few years age 16-21 but it’s the final, adult admission that was so much worse than any other. The hospital had a reputation, I knew before I went in that it would be better to be literally anywhere else, but illness and geography meant I didn’t have a choice. 

As soon as I was admitted I begged to be transferred but patient choice was long ago thrown out the window for a sectioned psychiatric patient. It wasn’t until I read my notes years later that I really understood CCG’s and the funding backdrop.

Anosognosia is a key symptom of anorexia. You can see your weight going down, your intake going down, your behaviours damaging your relationships, life falling apart before your eyes and your mood plummeting, any rationality blurring and fragmenting and yet somehow believe that it’s not that big a deal, other people are making it a big deal, you will change, you can sort it out, if only you can find the right brand of yoghurt, if only it can be fixed by having an additional chocolate bar and slice of toast.

“I don’t need to be inpatient, just give me another change, I increased my meal plan by 100 kcal, I am better off at home” she says, weighing something ridiculous (I’m not going to say my weight, but if someone reading this is going to trigger themselves I’m sure they already know what a sectionable weight means). 

So yes I was a risk to myself, had no insight or understanding of the risks of starvation and wasn’t going to consent to medical monitoring or take the action required to stabilise my risk. In the face of that, psychiatry, as well as my mother, contend that “for your own good” you need to be in hospital.

To this day I have no idea how to feel about this? Would I have died? Would I have found my own way through? Who would I be today if what happened next hadn’t had to happen? What would it mean to me if what happened didn’t have to happen, I guess I tell myself it had to be this way because of how painful it is to imagine a world that’s not so cruel. 

Where hospitals places of care and restoration, nurturance and healing and not lunatic asylums by any other name, an extension of a carceral system, a place to lock away the undesirables, to delineate madness from sanity, to punish those who don’t conform and who scare the rest of them.

Anyway, I remember how scared I was when I realised the ward was locked. That I, specifically, was locked on the ward. That legally I was not allowed to leave. Legally I had no agency anymore. I was clinically determined unable to make decisions about my care, I was a risk to myself and couldn’t be trusted.

Other patients, voluntary admissions, could in theory leave, but in practice we were now all locked into this corridor of 20 beds, a meeting room, two dining rooms, two bathrooms, a kitchen and a central sofa and tv, seemingly sitting in the middle of the corridor but theoretically a communal space where we had to eat evening snack infront of a cooking show in the vortex of what happens when all the anorexias form a force field around which we orbited, getting closer and closer to that food-obsessed centrifuge.

The days were bleak. Usually waiting on tenderhooks to argue with a psychiatrist or dietician about how terrifying treatment was, how uninvolved in care planning we were, having to make desperate pleas and pitches to ward round to have leave requests or meal plans discussed and, when they did show up which they seemed to schedule with casual contempt for “I’ll see you tomorrow” agreements, hours or days later to be told you had less leave than you’d asked for, no meal plan change allowed, sorry we know best, sorry you can’t cope I guess you’ll just have to keep not coping whilst also not being allowed any freedom or social contact that might give you the means and strength to carry on, oh you’re jogging in your room now? Why would you do that? You must be causing trouble, not complying, do you want to be here forever? If you keep doing that you won’t get any leave at all.

You see, despite being sectioned on the basis of having no capacity to understand your own risk and behaviour, you are now going to be scolded, castigated, bullied, punished and have it held over you that you engage in behaviours that aren’t “helpful” or conducive to the goals we’ve set for you (“recovery”) or the goals you’ve set yourself (getting the fuck out of here asap).

Most of the trauma was in that contempt: 

Being held down to be nasogastrically fed and whilst a nurse sneered “what did you think would happen”. 

The transgression: I didn’t butter my toast and believed the feed would just constitute the calories of the butter, not the whole meal.

Being laughed at when I insisted not eating animals was a moral tenet and not a restrictive one – the implication, barely concealed, that an “anorexic” having ethics was risible. 

I was broken by the stripping away of any identity, any interests, anything I had found my self worth in being dismissed as “illness”, any assertiveness about who I was and what mattered was obviously “the illness talking” and “now is not really the time to care about that, you don’t have those choices”.

The euphemisms in my notes state “had to be constantly reminded to sit down, which she refused to do until further staff intervention” – my memory tells me this involves being pushed into a chair, held down, sat on.

The most visceral memory: kicking and screaming and being held down by 4 nurses whilst a 5th passed an NG tube. Pleading to be allowed to just drink the fucking supplement, that it should be offered to me for drinking and being restrained instead.

In a sickening, disorientating disappointment, when I got the stack of notes from the 9 months I spent in this hospital, this incident wasn’t mentioned. 

I was sure restraints would be documented by my guess is that a bit of  “manhandling” – pushing young emaciated women around – wasn’t classed as restraint.

Then there was the vicarious trauma of hearing everyone else’s cries, the woman who fought back and got taken to the general psychiatric ward “until you’ve calmed down”, the women who were in and out of that ward every few months, the woman who had been there for a few years, the woman who died on leave and being told that it wasn’t really our business to be furious with the psychiatrists for not protecting her, or maybe contributing to making her life unliveable.

I was given therapy whilst on the ward, 14 sessions documented in great detail in my notes by a therapist whose stance confounds me. She found me, “defiant… confrontational…challenging…hostile…resentful…attacking… aggressive…. defensive…aloof…contemptuous”. 

It didn’t seem to occur to her that the walls I put up protected me from the contempt of the staff, the disempowerment of the ward, the endless torture of having to face your greatest fear 6 times a day, deal with your mental illness and intrustive thoughts in every gap, be scolded for being ill in the place that is supposed to be knowledgeable about your illness, that you might, I don’t know, maybe be a bit cross about it all? 

When I expressed distress about being on the ward, anger towards staff or other patients she encouraged me to get to know them or to take part in groups. She couldn’t hold space for me to process what was happening to or around me. And when I picked this up and didn’t bring it up again, she noted our relationship was improving. 

The final therapy session before I discharged myself I cried “like a very small child” about being granted less leave than I had requested, I felt “insulted and humiliated”. I cried the tears of a trapped, lost, desperate, dehumanised, humiliated, lonely young adult, and she asked me if I was not crying as I cried as a child when my mother left me to go to work.

It made me laugh that that was the last interaction we had. As if she hadn’t heard of Ockhams razor. Or the cigar that was in fact a cigar. I was crying because the hospital was a hellhole and I knew I was not getting or going to get better. Because I knew I was leaving more “’damaged” than I entered.

My belief is that in a state of malnutrition, a physiological famine trauma, whatever the cause, our nervous systems and limbic brain is picking up information in a primitive way. We absorb relational trauma in a similar way to childhood trauma because we are regressed to our basic survival functions as we were then. When we are met with harshness we don’t need to have had a neglectful caregiver to begin to demonstrate signs of neglect and abuse. 

I have had to spend so long arguing that I don’t have causative trauma preceding my anorexia. I have trauma caused BY the anorexia, and more so its treatment that happened to save my life and caused the refeeding syndrome it was meant to protect me from, that managed to end the revolving door and be my final admission.

By making the experience so awful that I discharged myself from inpatients and then outpatients and then when I relapsed never sought help and put my family through so much having to cope with me on their own as we muddled through it until I galvanised myself to address this independently. 

Sometimes when I see eating disorder campaigns calling for better access to services it makes me so sad and angry, I don’t want more people to go through what I did. We need life saving interventions and anyone who needs their life saved, at whatever weight or stage these illnesses have made their lives unbearable.

But until services are not premised on a punitive ethos, to negatively condition anorexia sufferers out of the illness, I want to urge people to be careful what you wish for. Despite the layers of denial and the cognitive impairments to insight, we do know the illness no longer protects us from pain and instead causes it, we don’t need a hospitalisation driven by the desire to tell us “look where your silly little thin-fixation leads you, let this be a lesson not to lose too much weight”.

No amount of awareness raising seems to have changed the underlying assumption that madness = badness.

I feel like I should be caveating what I write with an endless stream of self-awareness. I know that I was distressed, anosognosic, rude, loud, difficult, non-compliant, disruptive, violent, symptomatic and in danger. I know that these interventions were in response to that and yet I still found them traumatising. I am not writing to present a solution – I don’t know what could or should have been done instead within the constraints on the system and the situation – my visioning for a future ideal would be a completely different system from the ground up.

The prevailing paradigm in mental health is punishment – giving the excuse as “institutionalisation”, the aim of eating disorder wards is to be so awful you keep yourself well enough to stay out. Despite many people requiring repeated admissions, the paradigm remains the same and staff admonish you get “get out and stay out”. 

This is somewhat effective, I had three admissions, my third being the most horrific and that experience did motivate me to “stay out” although it meant I was left unwell and without support, too afraid and hurt to engage with services but unable to take care of myself.

It’s not overwork or bad apples that make staff cruel – of course most staff are exhausted and underpaid and some get into the job because they like power over vulnerable people, but that focus distracts from the fact that institutions are set up to dehumanise mad people, a strange mix of infantilisation (you don’t know what’s good for you, I have the power) and chastisement (why are you doing that?). You are non-compliant, resistant, you need to be trained to not get attention for your bad behaviour.

Something has to overcome the cognitive dissonance of a person sectioned, and therefore deemed not to have decision making capacity due to illness, who is then castigated for behaviours (symptoms) and treated as attention seeking, troublesome, wilfully sick, who thinks she’s special, who should take responsibility

It seems that some of this comes from not understanding mental illness, even well meaning staff ask “why are you doing this to yourself”, “why don’t you want to comply and get out” as if they don’t understand the reason people are on the ward.

Alongside punishment, or a sub-category of it, is coercion and threat, most admissions are forced or coerced, wards are locked (I don’t know why I was surprised but realising the ward was locked was a horrible shock to me) and compliance is gained with threat of worse treatment. On an eating disorders ward the ultimate threat for distress was transfer to the general psychiatric ward which occasionally patients would disappear to for 24 hours to be sedated.

Units are protected by invisibility, although OTs, dieticians, social workers and psychotherapy came onto the ward, the team was permanent and complicit. No external professionals were coming in or asking questions. Psychotherapy was particularly complicit – criticisms of the ward were psychoanalysed away from their material reality – I was told I should “get to know” other patients, “find things in common” and “get involved in activities” when I told of bullying, abuse, screams of distress, competition and loneliness. An episode of extreme distress at not being granted leave or given reasons was related to “not getting what you want” and she asked “is this like when your mum left you to go to work”.

Dehumanising patients also involved mocking us – for me my veganism was mocked (although veganism presents a conundrum in eating disorder services, and should be examined and possibly challenged, laughing at someone telling you they care about animals as if it’s not possible to have both ethics and anorexia, as if every belief is a symptom is mocking and cruel) as well as compulsive exercise (yes watching someone jog on the spot and then try to avoid detection is humourously pathetic, I know it’s a bleakly funny sight, but laughing outright at a persons distressed compulsions is also cruel).

Diet culture is endemic in ED services and a lot of comments showing anti-fat bias get made – whether about gaining “too much too fast”, determining a maintenance plan at a conservative BMI, telling patients they “won’t get fat” and so on. 

I’m going round in circles here but to reiterate – dehumanising patients looked like, being mocked, being threatened (with transfer, section, tube feeding, restraint, losing leave), being endlessly reminded I was on a section and my consent was not required for tube feeding, being excluded from care planning and having unreliable, irregular meetings with the psychiatrist, being manhandled (although I remember being restrained, this remains completely undocumented in my notes. I can only conclude that it didn’t need to be written down as it wasn’t a formal restraint, just the pushing around and holding down an underweight young women who didn’t require much force to be overpowered), being shown a lack of compassion or any acknowledgement that my behaviours were a symptom and not a conscious choice or measure of my character.

A word to finish on nursing observations, 1:1 observations, on the toilet, in the shower – where your showers are timed for being too long, your bowel habits are commented on and, with new policy, nurses will wear body cams – is humiliating. It is predicated on humiliation because if you do exercise or purge whilst being observed you will either just be told “don’t do that” or restrained but mainly the threat is that if you do behaviours you won’t come off observations so the primary threat is the continuation of the humiliation and the admission and lack of leave, independence or autonomy. At no point is recovery or wellbeing mentioned.

It’s incredibly painful to speak about what happens on these locked wards. I was ill and vulnerable and left the hospital more ill and more vulnerable, at a higher weight but traumatised.

Because of this “access to services” is not what I want Beat to be asking for; services need to be transformed. I also don’t want “Accommodations for autistic patients” or any other small accommodations that make treatment less worse, not least because these won’t be applied because no one wants to make the experience less traumatising in case patients “like it” and “feel safe and cared for” and become “institutionalised”. I think this is more or less a straw man, most people want their liberty, most people who prefer hospital to independence is because of how bad life is outside not how great hospital is inside. Of course both repeated/long term admissions and proper supported living would make you a “drain on the state”, hence the system we have now. Until the idea that treatment must be horrible to prevent relapse, rather than effective is shaken then I cannot bring myself to ask for crumbs.

I believe many suicides attributed to the illness are a response to the “treatment”. Facing your worst fear 6 times a day every day under threat and coercion with little support or compassion, possibly brutally with restraint and tubes – not wanting to live whilst experiencing that every day? Yeah, I felt like that too.

It’s not much use saving someone’s life if they leave with so much trauma they don’t want to live it 

I can’t remember where I found this quote but it was written: “The treatment of AN, the violence, the behaviour modification, EDUs, who services decide to let die or forced to live”.

A section and enforced inpatient stay including force-feeding with a naso-gastric tube did in fact save my life. I am ambivalent about that. I am not uncomplicatedly grateful. I will criticise the clinicians, the institution and the system. I am still here.

I am actually now a therapist and that just makes me more critical, I can understand why decisions are made and things are said because I know the prevailing beliefs both psychoanalytically and psychiatrically and institutionally in the NHS. None of this makes it OK.

I don’t actually want to see a world where no one has anorexia, it’s an illness that is like 80% genetic in cause and has been around and documented for many hundreds of years and possibly has always been within human genetic diversity. Arguing for eliminating it would be eugenicist. I want us to be held, supported, fed and allowed to explore a meaningful life without being subjected to violence and correction.

I don’t want to see my experiences “formulated” – the diagnosis of anorexia nervosa is very accurate for me, it describes most of the compulsions, fears and delusions I experience accurately, when I experience them very intensely I say “I don’t feel well” because I see them as symptoms of a chronic illness, I do not agree that “madness is a sane response to an insane world” in my life – I have a brain that was predisposed to, and then developed, an incredibly strong fear or food. 

It’s kind of just bad luck, but it’s also who I am so I don’t see it firmly as good/bad although it certainly makes my life quite difficult, now I live with it and manage the trauma I endured in its “treatment”.

The DIM US framework

By Shaun @SGV_UK autistic.blog

I was feeling traumatised this morning and needed an outlet for my experiences. So I have created my alternative “Recovery in the Bin” framework that attempts to mirror the realities compared to the CHIME Framework for personal recovery. I call it the DIM US framework #RITB.

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Image Text
CHIME Framework for personal recovery
Connectedness
Having good relationships and being connected to other people in positive ways.
Hope & Optimism
Having hope and optimism that recovery is possible and relationships that support this.
Identity
Regaining a positive sense of self and identity and overcoming stigma.
Meaning
Living a meaningful and purposeful life, as defined by the person (not others)
Empowerment
Having control over life, focusing on strengths, and taking personal responsibility.

DIM US Framework for a “Recovery in the Bin”
Disenfranchisement
The state of being deprived of a right or privilege.
Characterised by poor access to social programmes, no adjustments for a disability in employment, not being listened to by people in authority etc..
Impermanence & Faith
All things undergo change including life to death and powerful to powerless. Suffering is not permanent.
Characterised by a change in new leaders in authority, Change in ideologies, salvation in an afterlife etc..
Misrepresentation
A false statement of a material fact made by one party on another.
Characterised by the belief that one is lazy, of immoral character and commits social sins. E.g. Stigma
Utility
The state of being useful, profitable and beneficial.
Characterised by peoples values only measured by their economic utility. E.g. Someone is worthless because they do not work.
Subjugation
The action of bringing someone or something under domination or control. Characterised by removing or creating barriers to social programmes such as access to housing, income, health services or food to control an individual’s behaviour.

A Tribute to Nick Dilworth

Nick Dilworth died unexpectedly in January after an accidental head injury. This is not right, it is not fair and the world is a much worse place without Nick being in it. But the world is often wrong and unfair, Nick knew this so very well and because he was a truly great and good man, he dedicated his life to fighting against this unfairness and wrongdoing. Nick was a friend, an ally of disabled people, and had nerves and principles of steel, he did not back down. When many ignored what went on in the world social security and the department of work and pension and disability benefits, Nick remained a steadfast combatant, I don’t know how many lives he saved, but undoubtedly, he saved many. And for those who passed, he never forgot, he extracted justice for the families. There were no riches or status in this work, that is how we know he was a good man, he did it because it was right, he did it because he was our ally. The world is poorer without him. 

As a measure of the man, on announcing his death on social media there has been now for many days a series of reactions, sympathies expressed and shock sadness and praise for his work and life. It was often on social media where his detailed in-depth articles were shared, where he drilled into the deep statistical information and exposed government lies and obfuscation. On one memorable occasional he proved that a well-known journalist was mathematically illiterate and was promulgating a statistical lie in support of the government, of course the hack blocked Nick and kept lying, but the whole world saw how corruption and lies are how murderous state policy is excused by the cowardly. 

Nick was also a very kind and caring man privately, all the finest attributes of a gentleman and none of the nonsense. That he could come across as an upper-class legal expert was a great asset to campaigns, where so many had dismissed victims as working class scroungers, Nick speaking alongside us meant our message was heard by people who otherwise would have switched off. He was funny and could be wickedly scandalous with his humour, which fitted well with the gallows humour often needed to cope with the obscenities being perpetrated by the British state on disabled people living in poverty. Make no mistake we are targeted for democide, and when we fought back Nick was right there on the front line with us. No one is gone from the world while there are people alive to remember them with love.

The service will be on Friday March 3rd at Marldon St John the Baptist Parish Church, starting at 2.30. Donations should go to Cancer Research. This is being facilitated by the Funeral Directors:

Online at stockmanandloram.co.uk/donations or sent care of:

Kim Palmer,
Funeral Director,
Stockman & Loram Funeral Service,
19 Holwell Road,
Brixham,
TQ5 9NE

We don’t know everyone who knew Nick, so if you knew him, admired his work or were helped by him, please continue to write this tribute to Nick by commenting or adding a message when you share it on social media.

Through the Glass Doors

Through the Glass Doors is an autobiographical illustrated book, co-created by 16 previous patients of Huntercombe CAMHS hospitals. It details the horrors vulnerable children face every day at the hands of Huntercombe (now Active Care Group) in placements which supposedly provide specialist mental health care and treatment. The book, alongside a letter of recommendation which provides lived-experience based solutions to Huntercombe’s failings, has been sent to a number of key medical and political figures in the hopes it will stir a response, in turn drastically improving the quality of care provided by Huntercombe and wider CAMHS and adult mental health services.

@nimahunt

throughtheglassdoors

Living in survival mode and decision making

When you are living in survival mode, making decisions can become particularly difficult & you can find yourself struggling with indecision, avoiding decisions or handing them over to others, or making suboptimal decisions. 

Suboptimal decisions can range from those that are ok-but-you-could-have-chosen-better (especially for the longer-term) to those that are outright bad or dangerous (for you). 

The aim here is not to criticise the decisions made but to try & understand why they were made i.e. why do we make (and keep making) decisions that are not in our best interest?

We’ll think about the more general case of decision making in survival mode & emphasise some of the particular impacts of trauma, mental illness & disability.

A few points about decision making first:

-decision making is cognitively effortful and takes time.

-it requires cognitive and emotional reserve

-it requires consideration of the timescale of the execution & consequences of the decision.

-it requires taking into account, your interests and goals, the various options to decide between and their relative merits, downsides and costs, often over different timescales. One of the major costs to be taken into account is the cost to yourself.

-it depends on the capital (financial, self esteem, social network) you have available at the point of the decision.

-it depends on the options you really have available to you as opposed to options that could theoretically be available. 

A lot the time when it comes to more critical decisions (as defined by you), we make the best/least worst/only decision we can/feel able to at the time in the given circumstances (includes our state of mind & body at the time). This is by no means unique to survival mode.

What’s different in survival mode are the following:

There is less/little spare cognitive and emotional capacity to make decisions

This also shortens the decision timescales (you are only able to think so far into the future). 

This can mean that you end up making decisions that are ok for the short-term but not for the medium or longer term ‘I just need to get through to the end of the week’, ‘this is the most pressing thing right now’.

However a more dangerous aspect of the shortened time perspective is that you can end up not really thinking about decisions that will impact you in the future (beyond the farthest you can see now). ‘It’s only going to happen 2 months later, I’ll think about it then’

This puts you at risk of making decisions that are unwise/bad for future you. Thinking about future you requires doing the difficult task of future projection. It’s difficult because we don’t know what our future state of being or the future version of us will be like.

We usually hack this by just projecting our current self into the future and think what we would do in the future circumstances we imagine. 

This is effortful but in survival mode it can be v. overwhelming because it involves an awful and often realistic possibility.

Namely, ‘I may still be feeling this awful in X months time, nothing will have changed’. This a very common experience in depression and other mental illnesses and in survivors of trauma and it is understandably easier and self-protective to not project into the future. 

Capital: depending on how long you have been in survival mode and your wider circumstances, you will have access to varying amounts of capital. Financial capital is a straightforward one, if you have enough, it can take care of a huge part of the business of surviving.

Financial capital provides a great deal of stability and other resources. It provides a buffer against some adversity as well as against the consequences of sub-optimal decisions, which makes the decision making less stressful, & gives you more options (see below).

Social support capital is fairly straightforward as well, who do you have available to support you? The more people you have, the more help you have to take decisions and buffer their cost and consequences. Let’s move the next one, which is particularly important.

Self esteem capital (how much you value and care for yourself) is an especially important factor and one that is often eroded (or never built up) by prolonged periods in survival mode, serious mental illness and experiences of trauma (esp recurrent trauma).

Self esteem capital is vital for considering one’s own interests and the costs to oneself. If you are short on this, you may not particularly care about your interests or what happens to you or what the costs and consequences are to you. 

This is something to particularly consider when you see someone making decisions that put them in harm’s way or at risk of harm or making decisions that are more about looking after (or serving the interests of) other people and actually disadvantageous to themselves. 

One of the very sad consequences of trauma and abuse is that it can make one rather enured or numbed to the costs and harms to oneself ‘I’m used to not being cared about’, ‘I’ve known much worse’, ‘At least this way I’ll be helping someone else.’

Which brings us to the last point which is about options. The decisions you have to make are about/between the options you have available to you. The more options you have to choose between, the more difficult the decision making task. 

So when you’re depressed, the huge numbers of choices on a menu can be absolutely paralysing. But in such states, so can deciding which of 2 outfits to wear.

On the other hand having too few options can often means that the decision is often a more critical one.

To understand the above, consider this, one of the most valuable options to have is that of not having to make the decision and being able to bear the cost and consequences of that. If you do not have this option, then the decision is more likely a critical one. 

Having financial capital means that you are more likely to have more options including the above particularly valuable one. The more critical the decisions, the more each of the (few) options has to be weighed up, the greater the consequences and costs. 

So putting all this together, what happens to decision making in survival mode?

1. It becomes very anxiety provoking and can lead to decisions being taken to abort/avoid anxiety.

2. Your decisions become more short-term ‘I need to get through this week’.

3. They become more suboptimal & you consider fewer costs and consequences, especially future ones.

4. You find it harder to step out of the overwhelmed moment & think about possible decisions & futures more broadly.

5. You keep avoiding & postponing decisions. One way of avoiding/minimising decisions is to make life more regimented. This minimises daily decisions (what to eat & wear, where to go), and the chances of new decisions coming up ‘Do you want to go for coffee?’

6. You try and hand over decisions to other people where possible ‘You order for me’, ‘what should I wear?’.

7. You stop thinking about the wider and longer-term consequences of your decisions and increasingly prioritise what is easiest (least effortful) now. 

8. You make decisions quickly, either before being overwhelmed by the process, or on the basis of a limited set of considerations, or repeating previous decisions (what I have done in situations like this before). Such decisions can be impulsive or reflexive/habitual.

9. The problem is that these decisions are either:

-not well thought out in the moment

-previous optimal decisions but in different circumstances (e.g. decisions that helped you survive previous abuse or trauma)

-are previous suboptimal decisions that were made in comparable states of mind and/or body. 

The intersection with low self esteem capital is particularly dangerous here ‘I’ve never thought I deserved better, even from myself, so I never cared what happened to me’. 

One of the most important consequences of our decisions is the set of future decisions they set up and the options that we have for those decisions. The longer you’re in survival mode, you have less capital, fewer options and harder decisions. 

This is perhaps the best perspective to take on the impacts of mental illness, disability and trauma and how they accumulate over time. 

All of these greatly increase the cost of functioning and reduce the reserve available for decision making.

All of them limit options, either through structural reasons or because options and opportunities were never available or had to be given up. 

All of them impact the available capital, often because there was never the chance to build up capital.

What might help? It can be helpful to examine one’s decisions and decision making processes with a close friend/relative or therapist who can help you step out of yourself to look at the decision without the intense emotions being so closely involved. 

The short cut version of the above is to consider advising a friend on how to make the same decision. It is crucial however to skip what is often the last part of this process which ‘but it’s different it’s for me/about me’.

However one particular area to focus your efforts and use your support systems for help with is to create time for decisions i.e. stop the anxiety taking over and driving the process. Creating the time gives you the chance to consider options, consequences and costs.

Finally, try and be kind to yourself. 

It is easier to learn from the decisions of your past self if you can feel compassion for those past versions of you and how they took the best/least worst/only decisions they could in the circumstances they were in.

Hisham Ziauddeen @HZiauddeen Consultant Psychiatrist CPFT, Clinical SRA Univeristy of Cambridge

The Collapse Of NHS Dentistry

Giger’s alien 3 monster drawing but with shiny nice teeth

The suffering is horrific. NHS dentistry, community physio, podiatry, are effectively gone now. What’s left is hard to access and limited in what they offer. NHS dentistry has become an emergency antibiotic and extraction service (after weeks or longer). Patients are often pushed into paying privately.

There’s a link between oral health and cardiac health, right up to sepsis. The cost of not having access to routine dental care (fillings, crowns, root canal) is high. Patients are in serious debt for emergency treatment, root canal & crowns. NHS dentists don’t always refer patients on for gum disease treatment and let it progress to extraction and dentures.

In the US it’s said you can tell poverty by looking at people’s mouths, the same will be true here. I will never forget a film I watched a few years ago of Americans queuing up all night (including wheelchair users) outside a warehouse for free medical treatment and dentistry.

No privacy, exam chairs, beds all set out. People shaking violently having entire mouth tooth extractions under local anaesthetic.

There’s also no appreciation of the impact of antidepressant and antipsychotic medications on dental health which can cause dry mouth increasing the risk of decay, but mental health services nor NHS dentists inform patients of products to help with this. Acute patients might have periods of sugar laden liquid meds.

Dentistry should not be a luxury.