Playing the System

The UK’s benefits system is buggered. I know I’m late to the party with moaning about this but it’s true and it’s only getting worse at the moment.

I suffer with anxiety, depression and borderline personality disorder. There isn’t 1 day in my life where one of those problems is not present and affecting my ability to live a “normal” life. I’ve blogged a lot about my problems, I’ve shared the effects of those problems with you and I’m very open about it. However, I don’t look like your typical mentally ill person, apparently, and that means that I can’t be ill…

Recently I had my wellness for work assessment, it turns out that they lied about my answers to fail me, I now have no income. CAB have been immensely supportive and told me that if I got a sick note from my doctor I could get help to tide me over, so I phoned my doctor. He refused. His refusal was because a psychiatrist that I saw for two 5 minute sessions after being referred to him by accident (I should have been referred to a psychologist instead) has told him that there’s nothing wrong with me. It may be worth noting that the reason for the accidental referral was because I was suicidal.

So now I am in a situation where, despite being ill, I’m not recognised as ill because a man who asked me approximately 10 questions, and took 2 phone calls while in my appointment, is allowed to make a judgement about my mental health. There is nothing I can do.

The stress is, of course, making my problems worse and I am now having to consider checking myself into hospital for my own protection because I recognise the signs of oncoming psychosis and suicide. Of course none of the professionals believe that because if I was really ill then I wouldn’t think to ask for help.

What irks me the most is that I want to work. I loved my job when I was able to do it and I would give anything to be in a position where I could work again. It has taken a long time for me to accept that I can’t at the moment, that I am too ill and too unstable. I am working towards it by volunteering, by setting up my routine, by practising having a social life. I’ve been getting there. But now the rug has been pulled from under me and I see all the signs that I am headed for another breakdown, but until I wind up in an ambulance again the government will believe that I am fit for work.

It still stuns me that mental health is so massively misunderstood and that the “professionals” are just as ignorant as everyone else. I am at a loss. It is rare that I give up fighting, I tend to always believe that there is a way to fix something but right now I don’t. Right now all I see is that because I fight to not totally fall apart I am punished, because I try to live a “normal” life I am a liar. So why fight?

The system is fucked. The end.

30 comments

  1. Lada MacManus

    The system there is horrible. I have a few other friends in the UK with disabilities and even with diagnosed physical disorders people are being declared fit for work. With mental health the situation seems 100x worse since there’s so much (deliberate?) ignorance.
    I don’t begin to understand the appeals process but it sounds ludicrous. I wish there was a way to get trough to your GP without you getting worse first. Oh and that pdoc? I have some very harsh words for doctors like that.

    1. Emma Coften

      I have fought my whole adult life to regain my health and try and carve out some semblance of a ‘normal’ existence and it does seem quite at odds that being proactive, trying to get your life going is punished rather than rewarded. I would like nothing more that to have a career and be in the slip stream like everyone around me. If I had had that little bit more support I believe I would have fully recovered before now, having been in the position of not well enough to work but well enough to cope not to need medical and social care attention. This has been detrimental as created a stuck state, ticking over with daily tasks just produced prolonged periods of worse symptoms and zombie like functioning. I don’t want to be on benefits any longer than I have to, I am dreading the letter for my WCA, not because I don’t believe I’m entitled, (or that my Dr doesn’t for that matter, she actually thinks I should have applied for DLA and has been encouraging me to do so since she believes that that is exacatly what the benefit is designed for – people in my circumstances!). The reason I dread it is the same reason I didn’t apply for DLA – I am proactive, positive and totally believe in my recovery, I’ve always thought this would be temporary (a bit over optimistic but it keeps me motivated) and I made the choice that fighting to get DLA would take away energies from focusing on recovery and course stress prohibiting it – which will be the same situation with the WCA if I end up being treated like so many others! Being accessed is fine by me, that is if I felt reassured that the process was fit for purpose and those carrying out the accessement where conducting it in a fair manor.

      I hope you can find a solution to your situation swiftly, in the mean time please take care of yourself and keep doing all the good things that create better wellbeing.

      P.S When I say not need medical or social care I mean that there is little to no provision for ME/CFS sufferers as the medical profession are very limited in this area.

      Emma – @EC1ecoem

      1. Vickie Ford

        I was diagnosed with Elher-Danlos Syndrome 2 years ago now an I am in pretty much constant pain, I am on the strongest painkillers other than morphine that you can get, I was re-broken my hip and back twice in the same time, some days Chris has to physically do everything for me including putting me on the toilet which at 25 is awful I’ll tell you, however I was and still am refused any benefits because I walk my child to school which is wait for it 10 doors down from my house??? I work a fairly physically demanding job now as you know however as I am self employed I can work the routine around me if it is a bad day we do less physically demanding roles. I feel for you the system is messed up and now their way of recouerating monies is to not give it out at all x

        1. Sam Barnett-Cormack

          Not had to deal with ESA myself, as been trying to make a go of self-employment, but if I had to stop it (cause it doesn’t work out, say) I’d be on to them, and terrified at the prospect. The latest changes are largely insane, and ATOS don’t even seem to follow the assessment as written. Only believe you’re mentally ill if you’re shaking, in some cases…

          1. PrincessL

            I have heard some real horror stories about ATOS and I am actually complaining but sadly that doesn’t change the situation I now find myself in.
            I’d love to try self-employment but I don’t think I just don’t understand all the tax and laws and things like that, I could never keep on top of it all. It is ideal for people with illnesses though because you can work your own hours

        2. PrincessL

          It’s ridiculous isn’t it. I can understand them wanting to crack down on benefit fraud but this assumption that we’re all lying is insane. There are so many people who desperately want to be able to work and we’re lumped into the same category as those who don’t want to. I don’t know what the answer is, I really don’t.

      2. PrincessL

        Thank you. It is so tough to know what to do. Stress is known to make any illness worse so it seems ridiculous to put those already struggling through such an excessive amount of extra stress.
        Thank you for sharing your experience

        1. bubbleboo

          I cannot even begin to go into how crap the system has been for us. I could, but it’s not the time or the place. Suffice it to say that I really hope the idiots wake up and realise that every person matters.

          Lots of love, I really hope things get better for you and you know where I am if you need anything Just yell xxx

          1. PrincessL

            Thank you sweety. It’s awful that so many people have experienced the failings of the system first hand. Really awful

    2. PrincessL

      It’s an absolute nightmare. I appreciate the NHS and I do realise how much good it does and how many people are able to get help because it’s free, but the standard of care for MH patients is appalling and there’s no excuse for it. It’s an absolute disgrace

      1. Jenny

        Going to pick up on Emma’s mention about DLA.
        We’ve just stopped receiving the payments for my son after a good few years of him being ill with Leukaemia.
        When he was initially diagnosed we had a social worker from one of the charities help us to fill out the forms. She knew exactly what she was doing and so everything went smoothly. The second time we had to complete the forms I had a copy of the previous ones to use as an example but still needed to get another of the charities social workers to check it for me.
        Before Christmas we had our third set of forms to fill out and I decided that I wasn’t going to complete them. Partly because my son’s well into remission now but also because I wouldn’t have a clue what to put on the form because of other things that affect him at the moment but also because those forms are scary looking.
        My mum is always saying that we should try and claim for help for him because there are so many people that she knows of who are getting benefits when there is absolutely no reason for them to.
        If you know how to play the system then you can get everything you want. If you need help but don’t know how to get around the system then you get left down.

        1. PrincessL

          I totally agree with your mum. I know of people who are living in lovely flats/houses, set up with massive TVs, never struggling for money and it’s all paid for with their benefits when there’s nothing wrong with them. It’s a stupid system.

  2. Anonymous

    the Department of Health and the main mental health charities made a big deal of announcing that ‘ Personality Disorder is No Longer a Diagnosis of Exclusion ‘ a while back , there was even an official Report published under that heading but PD’s remain dustbin diagnoses that are routinely used to negate people and research shows that single women with a background of suicidal ideation , depression and a PD are the most openly discriminated against dx group within the UK Mental Health system with two faced shrinks, doctors and nurses only to happy to wash their hands of them and exclude based upon diagnosis without even seeing people..

    seems we can add work capability assessors to this list of haters.

    hope there’s some change on this front soon as people are being deliberately pushed over the edge

    1. PrincessL

      It really is awful and it seems there’s no where to turn for help because all the professionals and help providers have closed ranks and are shutting out the people who need support. It’s truly horrendous and I feel like a naive idiot for not realising before!

    2. Beckickles

      I’ve definitely seen a change in the treatment from the NHS since I became a Mother. When I took an overdose at 18 not a soul was interested. I wasn’t referred on, no one saw me afterwards. To be honest, there was no after care at all – they just couldn’t wait to clear my bed and get a real ‘sick person’ in it.

      As I’ve got older and had a baby the care has been a lot more tailored etc. I definitely think I’m lucky but I don’t feel bad for it. I needed and still need that help. I do feel sorry that not everyone gets the same care as I do though.

      It’s a shocking system.

  3. Becky

    This brought tears to my eyes. I understand exactly where you’re coming from as I’ve been fighting through the same. Right now I’m in the process of appealing, but for someone who’s fighting agoraphobia, severe anxiety and social phobia it’s of course not easy! I’ve been fortunate that my mother has been there to help me, but I can safely say after 5 years of putting up with them that they’ve hardly aided my health problems but made them feel worse! Trying to ‘get better’ whilst you’re being hounded and forced to jump through hoops is terrible, and when you’re barely coping as it is it can be draining and almost impossible.

    And the reason they turned me down? Because I’m ‘well-kept’, ‘hygenic’ and I happen to be very articulate when I’m speaking. Because of my social phobia/anxiety I want to look those things so people don’t try to say bad things about me, so people don’t make fun of me – things which I get anxious about regardless of how ‘well-kept’ or ‘hygenic’ I am! I lose sleep over appointments 2 weeks before they happen, but I ‘look’ ok so that apparently didn’t happen. And despite the fact I told the assessor that I suffer from panic attacks, loss of sleep (i.e: anxiety) before and after appointments, the assessor put ‘does not suffer from panic attacks or any form of anxiety’. What?!

    I want to get better, to be able to go outside and meet people – I feel so trapped because of my mental illness. But without their help I can’t afford the help I can get to get better. Uhg.

    Excuse my rambling. Basically: I agree and can understand completely where you’re coming from. It might not mean much, but I truly hope that things will turn out better for you; that you’ll find someone who’s able to fight your corner.

    I’d hate to think you feel I’m just whining. 🙂 I just want to let you know… you’re not alone. I genuinely, genuinely hope that you will be given the help you so deserve. x

    1. PrincessL

      It sounds like we’re in exactly the same boat! I’m the same in that I always make myself up and dress nicely to go out, the worse I feel the better I look because I don’t want people to know. It seems that the doctors have no idea of how mental illness actually affects people, they seem to believe that unless you’re sticking pencils up your nose and saying “wibble” that you’re fine.
      Another thing that bugs me is “insight”. I’m forever being told that I have fantastic insight and then they refuse to listen to what I tell them!
      Sending lots of love and hugs to you. I hope we both get sorted sooner rather than later

    1. PrincessL

      I know. I am in the process of appealing

  4. PetitMom

    Hi Livi.

    I know how you feel. When I was finally diaganoised with severe depression it was a rough spot as not only did it get refused any extra help. Not only that but when I moved out to where I now live doctors here seem to think I’m just having a bad day, ignoring the fact I was on medication for 7 years, my mental breakdown or the fact I tried to kill myself. I also have MPD but only 1 doctor has ever helped me with it, the rest just say it’s stress or something similar. I live with my problems but my depression is so bad now I need to get some help.

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