A discussion initiated in RITB about the psychosocial impact of living in fear of DWP processes which have the power to cause; debt, poverty necessitating the use of foodbanks, deterioration or long term harm to physical and mental health, eviction, homelessness, attempted and completed suicide:

• Just saying that the DWP are causing us ‘stress’ doesn’t even begin to cover it and people can’t understand why people are killing themselves over the ‘DWP experience’”

• If we don’t share it, people don’t realise how the DWP are wrecking our chances of good physical and mental health.

• I just find it so hard to actually enjoy having a physically better day because I feel guilty and paranoid.

• Everything about benefits is so counterproductive to being as well as you can be, as and when you can.

• It feels like punishment reinforcement and grinds you down and down and down.

• It has also made me paranoid about having ‘happy’ photos on social media. I know that 90% of my time is dominated by despair as does my GP, Support Worker and genuine friends. Even a ‘happy’ picture can be taken on a suicidal day. In fact one of my best pictures was taken a few hours after I had written a letter to assisted suicide clinics asking them to take me on mental health grounds. I remember Fightback advising people to only post stuff on social media which reflected exactly what they said on their forms and I see their point entirely.

• This is a really important point. I’m afraid to post any positive or happy pictures or statuses under my own name on facebook. It increases isolation because on the one hand to help maintain friendships people want to see positive things, on the other I’m afraid to focus on the positive in case the DWP looks at my facebook page and assumes it is reflective of the 99 other days.

• The dwp have a facebook team in Scotland, they google claimants they are assessing and social media use was used against a claimant at a tribunal. This is why more people feel safer using a pseudonym which goes against FB’s policy of ‘real names’. Voluntary work has also been used against claimants as showing ‘fitness for work’ demonstrating zero understanding of the fact that stress vulnerability can mean that for some people working voluntarily maintains their stability but the pressures of paid employment destabilises it. Levels of voluntary work have always been high amongst mental health service users and former service users, because of stress vulnerability and because of being unable to fit working conditions not supportive of mental health i.e. insecure, temporary, low paid, poor conditioned work which offers limited tolerance of sick leave. These are the working conditions most likely to be offered to unattractive employees with large gaps in their CV’s which cannot be concealed. People with long histories are not desired by employers with an increasingly disposable workforce they can pick and choose.

• Totally conscious of the evil watching eye if the DWP when I write. FB is one of my main social outlets/point of connection – especially when I’m housebound. Which is a lot. But there’s lots I don’t say that I’d like friends/people more generally to know about. But U don’t write it coz I worry about this

• HUGE factor! Kept me trapped indoors for well over a year around PIP claim. Thought I was being scrutinised, filmed all the time. Thought anyone asking me for directions or for change in the car park was a set up. Made me so much more paranoid and more unwell and restricted me from doing anything remotely beneficial. It still haunts me all the time but trying so hard to not let it now. One letter from them though and I think it will all kick back in. It got to the stage where I thought any car driving past, any plane flying over my house was filming me. I thought the TV and my computer were filming me at home. I didn’t want neighbours to ever see me in case they were keeping notes on me. I remember a little old lady asking me to read something on a packet for her in a supermarket and I did and for weeks after I was terrified. Another time a man asked me for change in a car park and he had his phone in his hand and I was convinced I was being filmed. I have always been prone to paranoia but it got completely out of control when I was being reassessed. It has taken really intensive work with my Support Worker over a year to undo the harm from the assessment, reminding me constantly of the validity of my claims, that I am genuine and have nothing to feel guilty about, the unlikelihood of any of this and that I suffer enough and should not let the DWP dictate my life any more than they already do. So much easier said than done though once you get stuck in that mindset and fear you could lose everything you depend on and be publicly shamed by people who have zero understanding of how debilitating your invisible illness can be. There was even a time when I wanted to write them an explanation letter every single day to explain and justify my actions.

• Scared to open the door due to not always using my stick, and furniture surfing instead indoors, or opening the door to a ‘Daz doorstep challenge’ setup, that I heard was their way of catching out ‘fakes’ years ago. Scared to leave the house with just my stick even going to a car directly outside and using a wheelchair the other end. Scared to walk the distances I can manage for fear of being accused of being able to do more. Like others, I have had paranoia about being recorded and 2 psychotic period’s, one where I thought they were on my street and in my house and had decided I was a psychopath and not deserving of support or benefits. One where the DWP could get inside my head and were inside my head day after day quizzing me about my abilities. Scared to smile or laugh. Constantly paranoid outdoors. Felt paranoid sharing this. Paranoid about telling doctors what I can and can’t do. Paranoid every time my psych used to say to me ‘you’re walking well’. Scared to tell or show anyone what I can do – feels vulnerable for anyone to spend much time with me, because then they’re able to see over time what I can ‘usually’ do.

• DWP are utilising paranoia etc to weaken us, it is a tactic that pertains to democide.

• Until I got the letter saying I had my money back I could not settle, my PIP started in December and only got sorted now. It impacted in every area of my life, the complete invalidation of peoples illnesses is awful, the DWP are cruel

• Watching all of you go through this “brown envelope” thing is like watching friends get tortured. That is the best way I can put it. It’s senseless and cruel. It is clearly nothing but a systemic, governmental, genocidal process that is horrifying on the scale of other intentional genocides. I am sick for all of you.

• Whoever said if you stand up to bullies they’ll go away was talking through their shitehole, every day is an anxiety-ridden nightmare, no-one can help, I am alone. They won’t stop until I’m gone, that’s their raison d’etre now, from social care agency to search and destroy unit in the space of a year or two, it’s a cull. Terrified of the mega judgmental outdoors, and the television and Facebook are an extra level of hell, with their faux documentaries & dismal manufactured opinions,’ oh, I saw someone get out of their mobility scooter & go in a shop the other day, they’re all on the take’. There is no hope.

• The fear very rarely goes away of a double -whammy. F*cked over on DLA -PIP etc -then (for me and I would guess most) impossible schedule on a “Job Search”. Have been trying to look for Plan B’s -but thin on the ground

• Since 2010 I have become much more nervous going out – even in my wheelchair. I feel paranoid about any strange cars or vans, and also feel that the average person on the street has become much more judgemental.

• Just go into hiding. No social visibility. I hate the game to play for the form to be completed, the residual self-doubting of your own disability is awful after you have been made to feel like you’ve had to manipulate a broken system. Amongst all the anxiety and sleeplessness it’s hard to manage this and remain able to value yourself. I’ll never forgive them.

• I was advised by a welfare advisor in 2011 to cease all publicly advertised activism and to only do things which were strictly under the radar. I feel like I’m part of a world war underground resistance whereby I can never speak of previous public voluntary work, can never speak or write in my own name, be photographed or filmed, which makes attending any event in the age of mobile phones and live streaming impossible. This has cut me off at the knees in terms of the contribution I can offer to; peer support, alternative and user defined approaches, teaching. I withdrew from research because of the fear of being visible in any way, professional colleagues understood why and share my anger at being hamstrung. My world has become smaller, some days I am afraid of standing by the window as my voices tell me that the cars across the road have long range camera’s spying on me. That the council have CCTV monitoring every time I leave the building. That the webcam and mic must be switched off or else I am under surveillance. That my phone is being tapped, neighbours are being paid to watch me for signs of fraud, and that undercover operatives are in my supermarket (I’m too paranoid to state which supermarket).

• My voices now echo what I’ve read and listened to in the media over the last 7 yrs and for a few months everything I read I heard in my head in the voice of Ian Duncan Smith which was deeply distressing. Voices call me a ‘useless eater’, and if I go outside will tell me that strangers are ‘proper people’ unlike me because I have no economic or productivity value. I know that my voluntary contribution was highly valued by professionals, but now I’m too afraid to do it so I feel useless and worthless. I used to be proud of what I used to contribute voluntarily, now I feel like scum, and my voices tell me I’m scum. I’m afraid to claim legitimate concessions, do an Adult Education course, speak to people, and are afraid to make any noise in my home because of fearing an anonymous malicious report because they typically occur in our immediate community by people who are uninformed or unhappy with their own circumstances. I so wish I could sing, I would love to sing again but I’m afraid to sing in my home in case neighbours hear me and view it as being self-indulgent and lazy.

• I now treat every GP appointment as a Work Capability Assessment and fear that if DWP intrude into primary care further I will cease all physical healthcare.

• I fear the DWP more than being sectioned and would rather die than face their processes. I know I am living on ‘borrowed time’ but I have no escape because I am unable to get into full-time work and sustain it. The fear of DWP is without doubt now worse than what took me into services in the first place. It has taken my hope, my potential, my future.

• I feel that everyone, including some peers now judge me on the basis of whether I am employed or not, that no amount of voluntary work could ever match up to the gold standard of being employed.

• I took the dwp to tribunal for pip the whole thing took 9 months and it made my paranoia massive i got to point when i thought they were spying on me all the time thankfully they gave me pip in end but it was a big fight took up so much of my anxiety 24/7 glad it’s over for a few years.

• Being treated like a criminal as it went to court. I’ve not been able to go to that part of town since.

• IDS decided to put tribunals in courts there was never any reason for them to be there…

• I am currently in work so relatively ‘safe’ but do worry about the what if’s. I’ve lost three good jobs because of my mental health which was really traumatic each time but applying for benefits was relatively straightforward and the money came through within a couple of weeks. With recent welfare ‘reform’ I feel I’ve lost my safety net.

• That’s part of why they are doing this. They don’t want people to have a safety net. That way we are more compliant workers willing to put up with worse and worse conditions. And those who can afford it will get private insurance. I am in work too and I worry about what will happen should I lose it – whether because of my health or because of losing funding for my post. Insecurity and precarity are the tactics.

• So much of this resonates with me. I even avoid seeing and talking to friends (more than illness dictates) because I get paranoid one of them might mention me to someone else who might shop me to the DWP. I try not to have a searchable presence online, and I find myself checking around on the street before I leave the house to see if anyone’s watching. I don’t volunteer for an organisation I care about and which could really use the help, even though I’d like to try, because I think they’ll use it against me.

• I can relate to every word you’ve said. I avoid friends for the same reason and have lost some of them as a consequence – purely through this DWP fear; have done everything In my power to wipe any traces of myself offline (though have been a bit freer lately because I really want to be transparent – to be who I am illness and all – but since this thread that is now really making me anxious again) and there are certain voluntary organisations who are crying out for help round here who I know I could be useful to, and thus it would potentially benefit me too – yet I do nothing due to fear of DWP scrutiny, of demonstrating any kind of capacity which could suggest to them I could do certain things reliably when I know I absolutely couldn’t. The assessment process was so traumatic and made me more ill than my usual baseline Ill so I would never do anything that would invite being reassessed again and risk losing yet another year to the daily terror it invoked.

• This makes me so sad, human potential crushed

• Potential crushed – this. It was a huge contributory factor in my letter to the assisted suicide clinics. Continuing to live like this is intolerable. It is the complete antithesis to being supported in being able to make the best of what you can and of contributing what you can. I am trying to challenge it personally at this current time but one push from the DWP and I know I’ll be back right over the edge. Every contact from them makes life that much more precarious. For those on here subjected to repeat assessments it is nothing more than sadistic.

• Independent living of people with physical/sensory/intellectual difference meant being supported. Now it doesn’t, & I’d say even less so for mental health.

• Mad people have contributed much voluntarily which Trusts, charities & uni’s have benefited from. This vital contribution is being lost because of the fear it will go against claims. It’s never mentioned that before 2010 voluntary work as an unofficial outcome had been supported by many professionals.

• Charities etc. have lost a committed ‘as and when able to be’ workforce of often very talented, caring people.

• You have to be incapable as a claimant, and the fear & paranoia they induce makes people’s lives harder to live so you can end up becoming what they require. Then services require positivity and recovery the complete opposite of the dwp which skews all healthcare relationships.

It seems so easy to some people, to escape all of that by being employed. The welfare system doesn’t support part-time working without PIP & self-employment will assume a full time min wage before Working Tax Credits. The rise of shift/temp/unsocial/zero hrs hasn’t helped anyone’s wellbeing. Then there’s the never talked about issue of people who are unemployable. People with very long gaps in their CV who won’t even be attractive to employers for insecure work.

• I had pseudonyms for years as both an artist and musician to stay off the dwp radar, tried to think I liked it as it was a strategy per se but felt like a physical manifestation of being controlled so got rid of them. It stops me from pushing forward my art (even though it is the one true constant I have). To explain any of this to galleries curators etc just seems like I’d come across as a fraud or I’d be asking them to be complicit. Just realised the comparisons with everyone’s paranoia/fear, that this so flippin STASI

• They have taken the concept of independent living to mean self-sufficient living – which is total bullshit. Independent living means living your life and getting the support you need to live it, including financial help.

• My ability to trust any health care professional was severely comprised by my experience of mental health services especially inpatient and secure provision, but now the collusion of healthcare professionals with the DWP especially since latest ‘Work and Health’ proposals and changes to ESA as it becomes embedded into Universal Credit means I no longer feel able to consult with a GP about any health concerns physical or madness. Having said this I don’t feel this is paranoia just being sensibly cautious. I am however very worried about Scottish Government proposals for claimants for new disability benefits to be asked for informed consent for DWP to have direct access to our medical records. How can it be informed consent if the choice is let us see your medical records or we will take all your money that you need to survive and you can just go away and curl up and die.

• The Scottish Government has just consulted on their Social Security Bill and are due to take over provision of disability benefits which will replace PIP DLA and AA as well as carers allowance and some of Social Fund benefits such as funeral payments. Although at the start of process there was a lot of rhetoric about treating everyone with respect and dignity and fairness as well as involving current claimants of disability benefits in drawing up proposals for new benefits, but in reality what’s gone into the Bill is making a lot of entries that things will be worse under the new Scottish Social Security Agency then they are under the DWP if that is possible for you to even imagine. Also feel the involvement of people with experience of claiming benefits has been really tokenistic and we have not really been listened to. Their whole approach seems to be driven by the need to protect the public purse rather than the rights of disabled people. Very very disappointed.

• I think that it becomes paranoia for some of us when it infiltrates everything you do 24/7 as it did for me for over a year, it even affected what I did locked indoors 24/7. My claim was genuine and still is but no matter how much my doctor reminded me I have nothing to feel guilty or worry about it totally took me over. I think I am now back to sensibly cautious. I have a brilliant GP who absolutely refuses to let the DWP compromise how he supports his patients but know when he retires and the next generation of doctors are less likely to question colluding with the DWP that it will be like being thrown to the lions. It is awful how all this is affecting our trust in consulting about our health and could result in dangerous consequences for many of us. I am in England and I had to agree to full access to my medical records for my PIP claim which I absolutely hated doing and added to how traumatic it was. There is so much sensitive stuff in my notes and I can’t bear even genuine doctors having access to it. My GP tried to reassure me saying they can’t even be bothered to read the medical evidence we submit and don’t have the time or resources to ask for access to more records. Nonetheless it feels like a gross invasion of privacy and just as you say it is not informed consent at all, it’s the worst kind of ultimatum: you lose everything you need to survive if you refuse consent.

• Does anyone else feel this constant guilt for being on benefits? However much I understand where the guilt comes from (outside ideology) it never goes away.

• Yes constant

• Yes all the time and deep shame, like I no longer qualify as human in others eyes.

• If you can volunteer you’re ‘fit for work’ and can be stripped of all disability benefits, social care support and on a JSA path to destruction.

• That’s the worst position – the JSA and temp poor conditioned work see-saw

• Trusts, charities and mental health projects need to be careful with suggesting voluntary work as a key part of recovery when people have lost ESA because of it, ditto ad hoc paid work unless under Permitted Work AND viewed as supporting ‘recovery’ AND be prepared to write supporting letters to that effect. Failure to do so can mean rapid suspension whilst investigated. Permitted Work and whether this goes for or against a Work Capability Assessment is unclear.

• I understand why some people do peer, recovery college type jobs whilst privately hating the line they have to toe, because where they exist that’s better than precarious manual work, the only problem is if the shit hits the fan personally they’re in no better a position than people fast food and retail where you’re out and back into the worst end of the DWP mincer.

• I used to have security, the system was so much fairer and easier to negotiate and with support. Now, it feels like they have a list and when your time is up they will get you and they will crush you to death whilst hoping you will jump before you’re pushed.