Now, I don’t want to moan, but this space is somewhere where I like to be honest about my experience of recovery, so, to be frank, things are a bit rubbish at the moment.

1. We’d planned a short break this week on Barra and Harris, but one of Calmac’s ferries broke down; they cancelled our sailings, so no Hebrides for us. Boo.

2. With just a few days notice, the hospital have moved the date of my heart procedure back to the end of the month. I had mentally prepared myself for this to be happening very soon, and it seems strange now that it is not. Indeed, I feel rather at a loss for what I should do mentally: put it to the back of my mind? Remain in this weird state of expectant limbo for a further fortnight? I had also made plans for several happy things that were to happen after the op, and these have now been disrupted.

3. According to the government, I am not disabled. This seems rather odd, since I find it hard to walk, cannot lift or carry, need Tom to help me in and out of the shower, and spend entire days poleaxed with fatigue. I was paralysed by a stroke five months ago; my entire time is taken up with rehabilitation and rest; and my GP has declared me currently “unfit”. But apparently none of this equates to disability in the eyes of the current administration. To explain: after I was discharged from hospital, my care team instructed me to apply for DLA, as it is the key to certain government services I now need, such as return to work assistance. DLA is not a benefit – it is not related to income, and is not means tested. It is there for those whose mobility or mental health means that they need certain kinds of help or care. Someone like myself, whose mobility problems have meant we’ve had to adapt the bathroom, buy a new bed, and incur considerable travel costs as I am unable to walk or cart myself about to rehab, would normally be considered eligible for the lower level of DLA, which would also enable access to aforementioned government services. But not in the brave new world of Cleggatron’s big fookin society.

This is not about money. It is about being disabled. At the moment, I am a disabled person. Anyone who has read what I’ve written here since February will know that I am trying my utmost not to be, but unfortunately, right now, I am. I do not intend to be a burden on the state. I am not claiming, nor shall I ever claim any government “benefits.” I am not the Tory Press’s mythical nemesis, sitting on my arse all day, draining the public purse. But there are certain services – specifically those which are going to help my transition back into the workplace – for which I should be recognised as a disabled person. Now I know that I am a disabled person, but the government does not recognise me as one. So what am I, then? My reaction to this news about my identity and social status has been extremely complicated. I hope the academics among you will excuse me when I sum it up as a sort of reversal or failure of Althusserian interpellation.

Filling in the sixty pages of that berloody DLA form was a thoroughly humiliating and evil experience. I would say, with the exception of actually having the stroke, its the worst thing I’ve been through. Actually, I take that back — the worst thing is that, after the grueling task of listing and quantifying in insane detail all the things I unfortunately cannot do, I then receive a letter from the government that effectively says that I must have been lying, because actually, I can do them. This is how the government go about telling you that you are not, in fact, a disabled person.

“From a seated position, you can prepare a main meal for one person.” (gee, thanks. Would you like to see just how hard it is for me to bend down to get into the cupboards or oven? And pray tell me, how does one sit down to use a stove designed for upright human beings?)
“You can carry a laden tray to and from the kitchen” (with this arm? can I? would you like to see me try?)
“Outdoors, without assistance, you can walk X hundred metres” (unfortunately, there are days when I can’t even haul my ass from room to room)

Right now I cannot face what an appeal involves – effectively going cap in hand to that clueless wanker at the DWP explaining, “sorry, guv, actually I am disabled.” I imagine this is probably the case for many people in my situation and that the hideous process of being recognised as a person with a disability is simply too much for them to go through. It is certainly too much for me.

Apologies for this extremely ranty post, and for frequent reference to state apparatuses which readers from other nations will no doubt find inexplicable. I hope you do not feel that I am griping, or asking for sympathy, or insisting on government hand-outs or anything. I am not. I am a proud, and very independent sort of person who would simply like to be recognised as someone who currently has a disability. I’ve been unsure whether or not I should mention any of this here – but I am so berloody angry, and have been so brought down by the whole thing that, short of turning this space entirely silent, it would be impossible to hide. And, as I said, I am trying to write honestly about what recovery from stroke involves for me, so it would be wrong of me to disguise how I am feeling, out here, in ideological limbo.

127 thoughts on “limbo

  1. I think I mentioned to you way back ages ago in another comment in a galaxy far far away that my roommate has had a couple of heart operations in the past two and half years. After the last one, she was at home alone, maybe a day or so after she got out of the hospital, and the home care nurse came to do her blood work. Well, the front door was not but about 15′ from the chair she was in so she got herself to the door ok to answer it and then proceeded to be lectured about how she was perfectly fit if she could answer the door and blah blah blah blah blah…. That put her in such a state it took me about 1/2 hour on the phone to calm her down. You’re right — dealing with nitwits is just almost as stressful as the illness. I wish you all the best with your further dealings with the DLA and I agree with everyone else here that you should write to all the parties concerned. And the press.

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  2. Dear Kate, I do hope all the comments you have been receiving have made it clear how very healthy we all think it is for you to be angry, and I hope this anger gives you the energy to appeal and fight for DLA. You have been thinking a lot about metaphors lately – would this be a case for hyperboles ? When accurate language is not convincing enough, hyperbole may be the way to go – though of course there is also that specific code you need to learn, which may be an entirely different trope.
    I wish you luck and am sending as much strength your way as is possible. Ne te laisse pas faire !
    Best wishes

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  3. I do DLA forms for a living, I work for the CAB and Care and Repair and know it can be RUBBISH but you need help to fill the appeal in and you can ask the DWP to look at it again in the meantime. So please do lodge an appeal otherwise you are timed out and cannot do it later. Ask the DWP to look at it again and ask for a GL24 to appeal (this is only a couple of sides of A4 to fill in and gives you a blank space to say why the decision is wrong). Go to town on this! Then wait and see and if still no joy go to a CAB or get an advisor to come to you by ringing your local CAB and asking if they do visits or if they don’t ask them to tell you someone who can. Don’t let the barstards get you down!

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  4. I’ve not joined in with the comments before but I have followed your blog for a while and have been heartened by your progress. I think you are very brave and courageous. This is awful, it is everything I hate most about society and how it protects the finances of the masses. I work in Building Control and I do my very best to ensure that the unelightened understand their responsibilities regarding access and facilities for disabled. I know that this is a small contribution and is the bare minimum that can be provided and even then it’s is undertaken with bad grace and lack of care. Why support anything when at the other end of the spectrum people are being denied any support? I worked with a man who broke his leg doing some stunt for charity, the break left him with a limp and he was registered disabled, he still played hockey etc but was entitled to a blue badge and all the ‘benefits’ entitled to such.

    I am so shocked and disappointed for you.

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  5. Hi, you are right to rant about this subject. I used to work at the DLA helpline HQ based in Blackpool and therefore had to try to explain to ppl why there weren’t entitled and it was truly heartbreaking. To add to that, if I was on the phone too long, I would get in trouble with my line managers who literally want you to hang up on customers just to keep their figures down. It was disgusting. You need to appeal. It does take a long time but it’ll be worth it in the end. :)

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  6. I know I will just be echoing other readers’ comments, but I also wanted to say how shocked I am by your story! I was completely confused by their decision – how awful to put you through that after everything else you have been through.

    Please do not apologise for ranting – it is the appropriate response! More people need to hear about this, so you are doing the right thing to blog about it.

    Good luck with your fight – I hope they change their minds.

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  7. I have seen DLA refused several times to family members and friends (an elderly man I knew, a stroke victim, had his mobility car taken away because he could stagger ten steps with the aid of a stick, even though the nearest shop was a good 15 minute walk away). I hope you feel able to appeal; it is outrageous that you should be turned down.

    Hope the op goes well and the joyful post-op stuff can be rescheduled.

    Take care, sending you very best wishes.

    Alison

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  8. I was a family physician for 16 years, and one of the most heartbreaking parts of my job was watching brave, decent, self-reliant people being crushed by the disability machine. Whether private or government, the process of convincing a stingy and skeptical bureaucracy of your limitations is humiliating and directly contrary to the positive energy required for healing and recovery. Your experience of the process as being nearly as bad as the injury itself is extremely common, and requires substantial psychological armouring and distancing to get through.

    As for practical considerations, automatic first round rejection is a common strategy, as others have said. It is also worthwhile seeking experienced help with the process. The adjudication of a claim seems to be largely based on rote recognition of specific words and phrases, rather than meaning and content – knowing the code can make a great deal of difference to describing your disability in “legitimate” terms.

    All the best to you….

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  9. I agree with other comments above, that you should consider seeking help with this from an advice service or health professional involved in your case (or both) and fight the decision. The awarding of DLA is notoriously inconsistent, as other people have mentioned. Filling in the forms is horrible because you have to really focus on everything you can’t do rather than everything you can do, and of course nobody wants to do that. But please don’t give up. You are entitled to DLA and to be recognised by the state as someone who is currently disabled.

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  10. I second everyone who has suggested getting CAB or other professional help in filling out the forms. It should not be that you need the language, but you do. This is not the new Government, though I do not doubt for one minute that things will get worse under them; this kind of disrespect and hideous behaviour on the part of the system is not new.

    I hope the next week brings some good things.

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  11. I’m not sure that sending strength telepathically is possible, but I’m trying anyway! Don’t worry about us foreigners, I think we can all relate to similar state apparatuses and problems.

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  12. My father was told he was not entitled to any disability living allowance after suffering a near fatal heart attack. 1 week after his life saving operation his job seekers benefit was stopped as he was declared fit for work! He was made redundant 9 weeks before his heart attack. He also suffers from chronic rhumatoid athritis in both shoulders after working for fifty years as an upholsterer. Last week he received a letter stating he must repay the benefits he did receive because an administration error meant he was not entitled to receive them. He was admitted to hospital that night after suffering another mild heart attack.

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  13. This is not good. Negative forms such are this are one of the things that put people off claiming the assistance they are entitled to. Have you contacted the Lothian Centre for Inclusive Living http://www.lothiancil.org.uk/index.php? They might well be able to help, and if they can’t I would hope that they would be able to point you in the direction of someone who can. They work from a social model perspective- that is, the person has an impairment but is disabled as a result of society’s failure to accomodate them. I really hope the next week brings some good things x

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  14. You shouldn’t feel bad about sharing what your situation is, it’s not whining or complaining. The situation of people who are disabled or ill are hidden from view behind the not speaking of all the challenging details of coping and recovery.
    Also, when you share, you allow another to help you if he or she can.
    I followed the link to headway and see that they have a specific pdf about filling about the form. To me this means that they would also have people who can help advocate and give you advice so you don’t face this bureaucracy alone. Another person mentioned advocacy, and I think that’s a good thing to keep in mind.
    I read your blog and am inspired by your energy and your spunk. I’m sure that I am one of many.

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  15. No need to apologise! The alternative to getting angry is to sigh and accept things as they are, and that’s not healthy, surely?

    I hope you do appeal, even though I suspect it will be a hideous process. I know a little bit about government bureaucracy from the other end (although I’m in the education sector, nothing to do with DWP), and the best way of sending a message up the chain of command that things are broken is to make work for them. Don’t let them off the hook just because their form is shite!

    The thing is, as a nation, we demand value for our tax money and we expect our ministers to show that they’re doing something, which so often pushes policymaking towards the kind of fill-in-a-form-get an-automatic-result thing you’ve encountered. Civil and public servants often have a great deal of experience and a great desire to do the best thing possible, yet are not given the time (let alone the money) to really work out the best way of serving the nation. Ahem, not my own little rant…

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  16. oh god. Like you NEED more stress!

    Currently, they’re doing their utmost to keep me from staying in the country with these threats of immigration caps (no please, I’ll pay a million pound for an education here, build a life here, etc. to be reminded HOW foreign I am).

    I’m not looking for a hand-our nor do I entitled to things (and I’m not sure I should be complaining to you, as you certainly have a huge right to complain at the moment!), just I understand your frustration and maybe it helps to know you’re not alone in it (albeit in a different way.)

    I hope everything works out for you, and just to reiterate what all these lovely people are saying- you’re doing incredibly well and while you may not feel it sometimes, you have an amazing strength. (I haven’t had a stroke and sometimes it’s hard to get out of bed!)

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  17. As a clinician who works with people struggling with the DLA process, I completely agree with Julie C (9 July). Ask as many of the clinicians and health-care experts to write to initiate an appeal on your behalf, however much you would like to do this as independently as possible. It does seem to make a difference, however ridiculous that seems. It’s about working the system, awful and unfair though it is.

    Thank you for your blog, in all its aspects. It inspires me in so many ways.

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    1. Me too – I’m a GP and it is unintelligible to me why the decisions that are made ARE made.

      I would personally much prefer to be funding 1% of diddlers than making more miserable the lives of people who are struggling (and usually doing their level best to get on and live their lives). When we moved areas, and I was trying to find some work there were ads to go and do sessions for ATOS. But – I just COULDN’T do it! Perhaps the problem is that those professionals who CAN are the wrong ones to be doing the job?

      It’s all horrible and terribly counterproductive to put it very mildly.

      I won’t give advice, as you have lots of it, all excellent, above.

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  18. I could cry with frustration just reading your post. I had a haemorrhagic stroke in February and as I was temping at the time (after 30 years of working full time and having just lost my job) I had to apply for ESA, which has replaced Incapacity Benefit. I got it straight away BUT after a certain number of weeks I was called to an interview, where a crap doctor (I am a medical secretary – I know plenty of doctors) who apparently knew nothing about nothing ticked every box as “can do”. When I got the letter saying I’d scored “NUL POINTS” and they’d cancelled my benefit I cried with the injustice of it all. I have a job to return to, I want to return to work but, like you, there are days it’s all I can do to get out of bed. I know what you mean about not wanting to appeal – really, when I was sitting there waiting for TWO HOURS for this doctor to see me I was thinking I’d rather be anywhere than here being humiliated. We have appealed by letter and the good news (for ESA anyway) is that they pay you at the lower rate until your appeal is heard. I’ll probably be back at work by then!! Both my GP and the Clinical Psychologist at the rehab place say it’s too soon for me to return to work and it’ll only delay my recovery, but the 10 minute appointment with the tin pot dictator at Atos Healthcare overrules my own doctors! The Stroke Association (outraged) have written to my MP on my behalf, and I’ve written to him too, asking what medical qualification the person at the DWP making this decision has, among other things. I was told to appeal for DLA but we haven’t heard back yet. It took me 3 hours with the help of a lady from Age UK to fill in the damn form and I felt so depressed at the end of it.

    Please please appeal – get someone at the CAB to help, or the Stroke Association, but don’t let the buggers grind you down. You’ve paid into the system, you’re entitled to the help!

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  19. Having been through the DLA application process twice now and having an ‘invisible disability’ which flutuates with a condition that half the medical profession refuse to believe is real – I understand the sheer frustration, heart ache and bloddy hard work that goes into making the claim.

    I can heartily recommend Benefits and Work to you – their guide to applying was absolutely essential to my success in claiming. It costs around £18 to subscribe to the service to then access the guide but this certainly more than paid for itself by giving a clear set of guidelines on how to fill in the application. They also have advice for success appeals process. http://www.benefitsandwork.co.uk/

    They were able to tell me how to fill out the form to avoid the DWP saying exactly the sort of things they’ve said to you (you can make a meal if you sit down – actually ummm no!). I understand why the appeal process is the last thing you want to go through but you qualify and you should have the money to assist you in daily living, care and mobility needs.

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  20. Oh and its the trying not to be disabled, the managing and being the best you can be that hinders your applications. Took me 3 yrs to realise that xxx

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  21. Know how you feel (((hugs))) I finally got basic rate in November because I cant chop food …. not because my daughter has to help me get my bra on or wash my hair …. I can walk around dirty and half dressed but not it seems live on processed ready made meals!! I know which one I would rather live with.
    I really feel like a 2nd class citizen and yes it was humiliating fighting to be recognised as disabled but it was worth it. I know it may not seem important the money side of things but I manage so much better now I can afford transport and home food delivery from Asda.

    I hope you get sorted soon xx love and hugs xxx

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  22. I don’t know if you realise it, but this is not a new thing, nor is it confined to “Cleggatron’s” government. I’ve had to go through very much the same thing once a year for the last seven years. I have multiple chronic illnesses, mental and physical, all invisible, and I’ve had to fill in that damned DLA form and prove it as best I can over and over for years now. I was finally awarded higher-rate mobility and lowest-rate care component indefinitely from January, as they’ve conceded there’s no chance I am going to get better in the near future. I’m dreading going through a tightened-up medical exam only because the regular ones make me suicidal – I have cognitive processing problems and severe depressive episodes along with everything else, and it took three hours, with professional help, to fill out my last DLA form.

    I honestly think it is that – focusing on all the things you cannot do for long enough to fill out that form – and ATOS’ incompetence that make me dread the exams most, but it is not because I’m not a genuine claimant. What makes me angry is that the fakers will have the energy and stamina to get through them better than those of us who need it anyway.

    Also, and this is a thing that seems to attach to EVERY government that has had anything to do with DLA, I am furious that they focus on the 0.5% of claimed DLA defrauders rather than the billions that big businesses and tycoons cost the country in tax evasion every year. One rule for the rich, another for the poor – trouble is under ANY government, you need connections to get in there in the first place, so the poor are never going to be able to do it – we’re too busy trying to live like humans.

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  23. Oh and one last comment, I think being educated and “middle class” makes it a whole lot harder dealing with benefits, I can’t quite express how, but somehow they seem to think that if you’re educated you can’t be disabled or something… certainly getting help generally is harder because it seems to be assumed that you can sort things out for yourself.

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  24. Deepest deepest sympathy to you!

    On the political front – don’t get any shiny ideas of Labour being any better – they started the process of making it harder for the disabled to get help, it was just as bad under them. Though my heart sinks at the idea of the new govt making it even worse…

    The whole system is utterly broken, I constantly get the impression that no one actually knows how it works, every time I speak to someone they say something different. What made all the difference for us was getting some help, in our case our local legal advice centre helped us enormously (I have no idea what the Scottish equivalent is), as for me did my Dad getting involved with helping me with it all. Also contacting your local MP and member of the Scottish Parliament etc. can help if you don’t get anywhere – make them work for their expenses!

    They are utterly determined not to give anyone anything – they wanted to turn my late friend Amy down for the mobility DLA despite her being unable to walk to the end of the street without severe breathlessness (turning blue) and having to stop multiple times…

    I do wonder about how much all these appeals must cost. My best advice for now would be to fill out the appeal form (it’s not too long for Incapacity certainly) and then take a break from it and then find some help for dealing with it. There’s practically an industry grown up (mainly state funded…) around helping people get the welfare benefits they are entitled to. I do wonder sometimes if it wouldn’t be cheaper for the government just to make it easier for disabled people to get the help they need in the first place.

    This whole issue makes me so so angry, it feels like being kicked when you are down.

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  25. I came across this blog post via a link on Twitter, and I just had to leave a comment. I’m appalled that you have been turned down for DLA – appalled but, sadly, not surprised. I am permanently signed off work by my GP due to long-term and very debilitating health problems. I applied for DLA (on the advice of my GP) twice – and was turned down twice. They even turned down the application put in by a friend of mine who has had a heart/lung transplant and is rejecting!!

    I, too, would recommend appealing. Speak to your GP and/or specialist, and get in touch with the CAB, as others above me have recommended.

    You have every right to rant – I did too.

    I wish you the best of luck with everything, and thank you for expressing many of my views on the DLA system far more articulately than I could.

    claire x

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  26. the DLA forms are awful – i had to apply (& appeal!) years ago, and i still vividly remember the utter humiliation of writing endless pages of the things i’m unable to do. i also got knocked back on my first application – i think that’s pretty standard procedure for any condition that has even the slightest level of complexity involved (mental health/learning disabilities are difficult to quantify; stroke recovery can result in your abilities waxing & waning, etc.). and although the prospect of appealing is almost as depressing as applying in the first place, it’s definitely worth pursuing. on the plus side, once your appeal is granted, you’re given a backdated payment to cover the time since the date of your first application, which can be quite exciting :) i hope it all gets sorted out soon. rant as much as you like about this one – it’s a horrible, unfair, soul-destroying process, and i’m keeping my fingers crossed that it all comes out as it should.

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  27. Venting outrage in this space is a good thing and what’s more gives us all pause for thought. As for the big society… I wouldn’t even grace it with capital letters.

    As we read about your progress, I think it is easy for us to forget just how much resilience your recovery is taking. I am so sorry that you are having to endure this drain. It’s a long time since I worked in benefits and I can only guess that, as in my day, the response to your application is the result of some algorithmic assessment that administrative staff must observe. Do appeal if you can face it. As others have pointed, it will probably push the assessment up the line to someone who has the authority to give consideration to more evidence.

    There will be more days in your beloved spaces soon.

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  28. Everyone else has said what I want to say, more eloquently than I could but I just wanted to say that you are in my thoughts daily and hope everyone’s support will help you and Tom on this difficult journey.
    ..and rant when you need to…

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  29. ugh, so sorry. I think it’s good for you to get out the angry. I also hope you find the energy to appeal (and win). Don’t let the goons get away with this sort of b/s.

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  30. If you can’t rant here, where can you rant?

    Having read this i’m embarrassed to be a civil servant… but i do know my way around in red tape (and some people in DWP) so if i can be any help persuading you an appeal is manageable, just shout.

    Miss seeing you…

    N

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  31. this is really kafkaesque, to take the inventory they insist upon of what cannot be done, and have them come back and inform you not only that you are lying but that you CAN do that which you cannot must be perfectly dis-indentifying, if that is a word.

    of course you can and shall appeal it when your other procedure and the mental prep for that is out of the way. we all will help you however we can.

    xxx

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  32. You most definitely should rant if that’s what you feel like doing. And you MUST appeal. You have every right to that money and you must make those bloody wankers see it. xx

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  33. I know that the A word (appeal) sounds like the last thing you want to do right now, especially emotionally. But, I hope you’ll seriously reconsider this. My sister had to go through 3 appeals before she was granted total disability. Her challenges were different from yours. However, I think it is important to keep trying. I didn’t and, unfortunately, unended up emotionally ill because I kept trying, inspite of that little voice telling me I should have “talked back.” People who determine disability are sometimes paid to keep the number of disability awards down. They can also be SO cruel.

    So hang in there! try to take the emotion out of it (I know, easier said than done), hire an attorney and get started at round 2. Bon chance!

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  34. I think it stinks that your DLA application was rejected and it makes me furious.

    The lack of recognition plus the horrific experience of filling out the form itself is more than anyone who has any sort of disability should have to endure.

    The entire way the dla is worked out is a wound to human dignity.

    I’m sorry you are having to deal with this terrible stuff right now. Xx

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  35. I concur with advice above to seek out your local CAB. It’s not a new government complication, DLA was fooked before the Westminster election. Not that blame will help matters. Get onto your CAB, make an appointment with an adviser, and have one of those marvellous people work through the toughest part of the process with you.

    I love the CAB for all the support they offer mere mortals like us with jumping through those tedious, humiliating, and downright ugly bureaucratic hoops. For the interest of transparency, I should confess my husband works in one. He’s pretty rad.

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  36. Hi Kate,
    Thank you for letting us know what’s happpening with you. I hope you do get the energy to appeal this decision and set the record straight.
    Hugs, Reed

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  37. There is nothing I can say hat the above 80 odd comments have not said already. You are a very brave and inspirational woman and I send you warmes wishes and hope you get sorted soon.
    Love
    Lyn
    xxx

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  38. I’m afraid i’m not surprised. The ConDems have stated that they want to get people off DLA and into work, completely misunderstanding what DLA is. It’s unfortunate that this had to happen when you needed to apply. Have you tried contacting your local CAB or even your MP? It shouldn’t be so but an MP throwing their weight behind you in these cases usually results in an apologetic letter and “reassessment” in your favour.

    That said, as someone who is eligable for DLA but unable to even contemplate filling in the form even getting that far is an achievement. So don’t let the bastards grind you down.

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  39. Hi
    DLA forms are absolutely ridiculous. You have to answer each question only talking about yourself on your absolute worse days rather than being honest. Many councils have welfare rights workers who are excellent at knowing how to word these forms as this also makes a difference, they have excellent records on appeal also. CAB also can help with wording – it really does make a difference. Good luck.

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  40. Vent to your heart’s content Dear!!! All of us here will listen. I feel for you and more so since learning yesterday another knitter/spinner and owner of our local yarn store suffered from a major stroke. At first they thought she wouldn’t get off the breathing machine but she is now talking. Still has very limited use of her one side so she can’t knit or spin and has lost her store but she is alive and coming along better then the doctors down in Boston thought she would.
    Remember there are those of us out here who really enjoy hearing about your days even if you do have to vent.
    Blessings to you!!

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  41. What a perfect storm of awfulness :(
    I agree with all 80+ prior commentors who’ve said that you aren’t being too negative or ranty or complaining overmuch. If the disappointments and tribulations of everyday life are a bit much to handle sometimes, how could one expect to trip along blithely in the face of ridiculous obstacles like novellas of forms (to be filled out by someone whose pervasive exhaustion is part of the reason for the need for forms, oh the irony!). I hope a nice afternoon (or three!) in a garden or park helps you clear your head and replenish your energy some.

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  42. I sympathise and share your opinions of the illogicality of the DLA process, I was very ill before Xmas last year, my heart would slow to the extent that I would collapse, I spent weeks in and out of hospital and could barely walk from one room to another at home, I needed constant supervision as I could and did collapse without warning . My kidney function began falling rapidly to end stage renal failure too. I applied for DLA with a heavy heart, not wanting to think of myself as disabled but like you having to admit that I was at the time. I sent the form off just before Christmas but by the time the DLA folk replied in March the doctors had discovered that the heart problem was caused by one of my renal meds, stopped that and I began getting better. My renal function has stabilised at just below 15% and my fistula for dialysis is in place so I decided to go back to work part time. I was to be awarded DLA so I phoned up to tell them I was now back at work and would not need to claim it. I was met with the strangest response, they almost told me off for getting better, repeatedly telling me how much work had gone into processing my claim, getting letters from my doctors etc and finished the converstation by rudely telling me that if and when I became ill again (if being the heart problem, when being the renal problem I guess) they hoped that I realised that I would have to submit a new form and my claim would not be back dated to my original claim.
    I do hope you are able to reverse the decision and to get the help you are need.

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  43. These three things coming all at once are obviously a bit much and you need a little time to recover. I don’t know what the appeals timeframe is, but at least give yourself a few days – and some treats! – first. Ranting is also totally recommended!
    Of the three setbacks you have told us about, the stupid DLA system (which I have to say I don’t think the new Govt have had time to f-up further yet – it has been this crap for years!) is the one you can probably do something about. I too would hate the idea that had to go through the stupid thing again, but if you get an advocate to help, as almost everyone has sensibly suggested, there’s every chance the outcome will be better next time.
    All my very best wishes – Alison

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  44. The DLA thing is a pain my Mother and Father not in law have had to fight for their small fundings as they are both disabled. I know you can’t face the appeal right now but do keep pushing for it.

    hugs xxx

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  45. Kate, I’m glad you shared this experience – as you say, it’s part of what your life involves at the moment, so I don’t really see it as a rant at all. But it does suck. I’m sorry you have had so many letdowns this week.

    For what it’s worth, I hope you do appeal – you are too smart and strong to take their ridiculous decision at first instance.

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  46. Dear Kate, I first took note of you as a knitter, for your lovely Owl sweater, but after reading a few lines of your blog I became enchanted by the way you turn a phrase. As so many comments before mine have said, a written campaign in the local and National presses, might just be your higher calling in this situation. With your considerable gifts and charms, I am certain people will listen up and rally behind you. The pen is mightier than the sword! Your pen is a light saber; it will slice through incredible amounts of red tape.! Continued good wishes. Kelly.

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  47. Oh Kate, please moan whinge and rant as much as you need, it’s an untenable situation in which honesty and the will to recover are your worst enemy.

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  48. As an American doctor whose patients often think back pain makes them disabled, I find this post to be really upsetting! I don’t have that many patients with true need for disability as defined by the government, but the ones who do need it usually get that designation. Is there no way a doctor or therapist can help you with the papers? Ugh.

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  49. As one of those faceless bureaucrats who sits inside institutions which make these kinds of rules it can be absolutely horrifying to learn how rules can turn out when applied to individual cases. I am absolutely not agreeing with the rules or defending them, or even those that made these ones, but I do know how hard it is to create rules, how many and varied the situations of individuals are and how inevitable it is that sometimes they just don’t work. Well, frankly, how they fail in so many many situations. I read your blog slavishly and you are astonishingly NOT ranty, given all you have experienced I am constantly amazed by how well you manage to negotiate this foreign and often hostile landscape you are in. Amazed. I hope somehow that spirit of yours manages to find a path through this latest hurdle. I wish you luck, and give my apology on behalf of government desk jockeys and policy people the world over for our frequent failings.

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  50. My tip is to remember to be as polite as possible to any bureaucrat you deal with. The people actually checking your forms tend to have very little power over the decision. With these sorts of programs, the workers get in trouble if they are approving too many cases because then “they must not be catching all the frauds.”

    It’s a terrible process (on both sides of the Atlantic) but often the people in the offices want to help, they just can’t constantly risk their jobs to do so.

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  51. A friend of mine in grad school struggled to get her brother (severe schizophrenia and was unable to work) the needed benefits- his forms were rejected the first time, and it was so awful for her because she was the only family he had, and he needed help. Anyway she told her parish priest and he found her a congregation member who was a social security (as we call it in the US) lawyer and the lawyer helped her to re-file the forms. It went through and she was able to get her bro into a good halfway house that helped him a lot and took some of the burden off of her. My point is, (echoing the other commenters) get help with those forms, and try, try again. I am sure it is upsetting, but keep trying sweetie.

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  52. That’s awful, Kate. I’m so sorry for all the things that are going wrong, but especially with the DLA. In what world is being able to prepare a meal while sitting down an indication of non-disability? That’s just weird. I hope whatever you do decide to do you find the support you need.

    And this is probably a bit weird given that we never did meet up, but I am only in Dunblane and I’m a teacher so I’m on holiday for the next few weeks – so if there’s anything where an extra body would be useful drop me an email.

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  53. I’d just like to echo the suggestions of others to take all the expert advice you can to pursue an appeal. So many social welfare sytems are all geared to the paperwork and miss their point entirely. They can be made to work, if you get the big guns on your side.

    Rant as often as you need to, with no apology.

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  54. It seems to me in my experience as a reciever (eventually) of DLA (and from the stories of others) that they always turn you down first time, unless you are paralysed from the neck down, have no arms or legs or are terminally ill and even then, don’t count on it. This is due to the well known fact that if someone is suffering from an illness or disability, if you tell them they are lying/mistaken/delusional, their problem will go away. Or they will go away. I really, really try not to use bad language, so I will not tell you what I think of the morons who read what you say, read what your doctors say and then think you are making it up. All I can say is, they should try being on the receiving end.

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  55. Kate, it is generally understood that you have to have two or three goes at the DLA to get what you are entitled to. Especially if your ‘condition’ is variable. You also have to always describe the WORST days. There is no shame in getting help with the forms. Most people get the help of those who know how the system works.
    They are horribly demoralising forms, simply because you have to explicitly describe how ‘disabled’ you are.
    Unfortunately, in order to receive what you are entitled to, you have to jump through the hoops. It’s just the way it is. Charities often have an adviser you can talk to.

    Good luck with it. You do need to persevere.

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  56. Rant away! Then, deep breath, and go back and remind the paper-pushing bean counter at the DLA office that you actually CANNOT function normally at the mo but will be happy to update him when you can.

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  57. thaks for sharing and i’m so sorry you have to deal with crap like this. it happens in the u.s. too, i’m afraid. i hope you get the help you need quickly and with minimal additional hassle. good luck to you and keep your head up!

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  58. Bureaucracy gone mad – but predictably so.

    When you go for a job you have to learn to sell your good points. In this case you have to sell the worst case scenario! This is so difficult for someone with an essentially positive mindset like you. As several people have said – you need to take a deep breath, hide the positive elements of the day in a cupboard and bring out the dark, difficult bits, where you try to carry out everyday tasks but face great difficulties.

    Talk to Headway, CAB or whoever can aid you in formulating a true picture of your struggle – you will find you don’t have to lie, just leave out the bits where you triumph over adversity. As soon as someone reading an application sees a positive action they skim over the rest! Gives them an excuse to move on to the next form and achieve their target for the day!

    You are not whining! Get angry – you’re entitled!

    Hope the op is over soon and hope the holiday can be rearranged

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  59. So sorry to read that you’re going through this. Having seen what my mum went through with employment support allowance and reading posts like this I think that anyone who does manage to play the system to get DLA and/or benefits is some kind of genius.

    If you have the strength to fight, do so, but one of the saddest things about the disability allowance and benefits is that a lot of people refused them who are genuine need just aren’t up to fighting.

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  60. Kate, I’m so sorry. What a bloody awful experience. You aren’t ranting but it sounds truly disheartening experience. It is a hideous form which I tried filling out for my mum but we both lost the will halfway through. I find it staggering (but sadly) not surprising that this happened because I have absolutely lost faith in the state doing the RIGHT thing. It appears that everything decent (like supporting poor families with housing benefit) and good is being torn apart at the moment. I was thinking of you when I heard the welfare reforms bollox and hoped that your claim would go through before Iain Duncan-Smith has his way.

    Definitely appeal – if I can do anything help you with the appeal letter, write to my MP let me know. I think Roobeedoo’s idea to get help from the Stroke Association is really good, as is writing to the press about it. I would send it to the bloody liberal democrat paper The Guardian, they should be so proud of the horrendous havoc that the coalition is creating. (It might be obvious but currently I spend most waking moments absolutely fuming at the moment)
    Big love, thinking of you and I’m so sorry your trip get cancelled as well.

    Lara xxx

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  61. Thank you for sharing your struggles – it is your blog, after all, so you shouldn’t be apologizing for sharing what is going on with you. Perhaps you should also try writing some letters to the papers, to get more public knowledge out there?

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  62. Hang in there Kate!!! You are intitled to those benefits! Appeal the decision and make sure they know you won’t take no for an answer.

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  63. Our amazing coalition. I’m sorry; how dreadfully frustrating and upsetting. I think other people have the right idea; write to the Torygraph, the Guardian, hold your nose and write to the Mail and the Express – you are (temporarily) disabled, you need this to help you cope with day to day living, and that is what the money is for. I hope it works itself out. Thinking of you.

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  64. Brilliant rant :-) there’s cheering and footstamping all around the berloody top 10 developed nations with broken bloody health care systems. I’m too exhausted to speak as eloquently as this post – now I can email a link :-) apparently I’m so ill and disabled I need services for over 65s, which I can’t get cos I’m under 65. So I get nothing. Insane.

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  65. Kate, you have every right to be very angry. I hope your anger will fuel some change in the obviously messed-up system. Our family (here in the USA) had to hire a lawyer to get the disability needed for my brother. It’s standard to get rejected the first and even second time. Don’t be afraid to seek support and an advocate to do the work for you.

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  66. I’m sure someone must have said this already, please do steel yourself to appeal – but don’t do it alone. Lots of services will offer you support with completing the forms – your local council may have a benefits advice service, or try CAB or a local DIAL (disability info and advice) or other disability service. The forms are a nightmare, and giving the ‘right’ answers is an art – so get an artist in to help! With best wishes for a better outcome.

    I found your blog for the knitting but I never wanted to stop reading as the subject matter broadened.

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  67. When we applied for attendance allowance for Malcolm’s (now late) father, it was turned down, but then someone from the Citizens’ Advice Bureau helped us fill the form in the second time and he got the allowance – this chap knew how to (truthfully) answer the questions to ensure that the application would succeed … perhaps you could get some similar advice (yes, I know you shouldn’t have to, but you should have your allowance). Also, I know it’s not on the same scale as your op date being changed, but I have been waiting for an appointment with ENT – yesterday I got a letter saying I could be seen at a private hospital ….. in Glasgow – not the easiest of places to get to from Hawick. But if I don’t go, they are no longer obliged to see me within the statutory nine weeks!

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  68. That’s outrageous. And it’s ridiculous that these decisions are being made by civil servants on the basis of checkboxes rather than by referrals from the medical professionals who *know* about your health and what you need to help you get back to something as close to normality as possible.

    I’m sorry things aren’t good right now, and I hope they improve soon.

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  69. Kate, you are right to be angry. And if anyone says you shouldn’t be then hopefully you will hit them over the head with that laden tray that you’re allegedly able to carry. Be angry, and use that anger energy to drive through your appeal. Talk to the GP who has declared you unfit and see if he/she can’t help you through this process. And you really should vent on this blog, as this is a record of what you’re going through, and what you are experiencing. And if the the silly idiots need substantiation for your appeal, print out this blog and hand it over!

    And I am sorry about the op and Barra. :-(

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  70. Kate, how crap. The monstrous DLA form strikes again. If you do decide to appeal, and take your time before deciding, you’ve got some great advice above about getting support to do this. Please let yourself ask for help. The one place that hasn’t been mentioned was Citizen’s Advice. Most larger bureaux have specialist advisers who will help you to appeal. I worked in one for 8 years and we would have taken your case up without a pause for breath.

    And I know it may be hard for you to do this but PLEASE, follow the advice about telling them about your worst days. Stroke rehab doesn’t have much room for pride so bury what you have left in a tin box in the garden for safe keeping, grit your teeth and give it to them from the hip. Both barrels.

    And as an ex NHS member of staff – WE’RE SORRY. We still haven’t managed to get scheduling of operations right and we muck people about. We’re working on it, which is small comfort when it’s you that’s having your life messed around.

    Tilla

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  71. Not that you need reassurance from a stranger, but without you (and your occasional rants) the dialogue about recovery would be at a loss. I say appeal and use that appeal to shed more light on the process. You’re a terrific writer and an astute observer.

    Like it or not, you are a the kind of warrior the disabled need. I’m sorry fate put you there, but I’m never sorry to read what you have to say. Besides you’re cute as heck and tough as nails.

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  72. Oh, Kate! That is worth ranting about! It’s awful to get yourself adjusted to an idea of surgery and prepared only to have it readjusted by someone who’s not you. It takes the little bit of control you had over the situation away. And to gear up for a break and have it cancelled is also less than fun. But I can not believe that the government is saying you’re lying or mistaken about what your abilities are at the moment. Shocking! I hope it works out for you. Until then, I will continue to send healing energy and strength your way. Take care!

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  73. Kate, I agree with all the people who advise re-applying/making an appeal. It seems ridiculous that someone with your command of the english language could not find the “right” words but clearly there are key words and phrases that an advocate in the field would be able to suggest for you. I can’t imagine that you won’t fight this – if not now then later when you hear about yet another deserving case being denied. I think it’s excellent that you have such a detailed record of your trials and tribulations and I know it will help you and others in the future.

    Good luck with your procedure and continue to surround yourself with positive energy for the next few weeks so that you make a quick recovery. I am sending calming, healing thoughts from Canada.

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  74. You have to wonder what they were thinking. I’m angry and sad for you. No one in your situation should have to endure this. Please know that so many people are pulling for you. Thanks for sharing this with us.

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  75. Hi Kate – I wonder if the blanket response to any application is to deny it, regardless of the level of need, in the hope that the person will simply not appeal. It’s enough to deal with the disability and recovery without being denied the help you are entitled to. It is truly shameful. It is a paranoid process that assumes people are trying to rip-off the system, rather than that they are applying for assistance that was set up to do exactly that. When I have to deal with similarly horrible stuff I try to limit my exposure to it, set aside time to deal with it, and like you had planned for after your op, set up nice stuff around it. I really wish you well. P x x x

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    1. B.i.n.g.o ! yup, you’re right. Here in U.S., Automatic blanket response is do deny all applications the first time around. No kidding. It’s not fair I agree. One co-worker was dying from Cancer and she was denied on her first application. Sadly she died shortly after her second appl. was approved. What a waste of time and energy! It can take up to three appeals when you apply all on your own. You should call one of those commercials on television where those lawyers advertise that they can help get you disablilty status. They are legitimate. I called them when I needed to back in year 2003. Once they were on board it only took 6 months to work through the red tape. It’s worth it to call them. Often times even though they might be base in one area they are still licensed to work in other areas. Example: I called Flessner, Stark, Tanoose & Newlin attorny office. They were out of Indiana, USA but also were licensed for Illinois, USA

      Good Luck and hang in there!

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  76. I agree with Roobeedoo – I am constantly battling with beurocracy on behalf of my dad and the forms that have to be filled in are horrendous – however if you have someone who knows the key words which are usually safety and vulnerability, then it’s much more successful. What makes me cross though is that one shouldn’t have to go through that. You are right to be angry, Kate. Your energy should be channelled into getting well, not fighting with jobsworths. I can guarantee that I will spend at least a half day a week just going through forms and admin for dad’s care and if I didn’t do it he just wouldn’t get the help. Having just spent the whole morning fighting with the Post Office re his pension I am exhausted – and I am fit and healthy so how must you feel?

    All of that coupled with the frustration you must feel about your operation and your holiday – it’s no wonder you are having a moan – and why shouldn’t you. I know hospitals do this quite a lot and it is incredibly frustrating and really messes with your head. I really feel for you just now.

    You are right to record your feelings – it’s all part of who you are and how you feel and it’s all valid.

    good luck with the effing forms

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  77. Kate, I am fairly sure that it is ‘policy’ to refuse first time requests. You really should appeal. Have you a social worker or maybe your occupational therapist who can help you with this, I am sure they have plenty of experience. There is also the Citizen’s Advice Bureau.

    This is definitely a case of Don’t let the * grind you down. Keep on, Kate, you can do it.

    All the best,
    Dawn

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  78. Kate. I worked for many years as an OT specialising in mental health and complex needs. It was a frequent and important part of my job to support people with filling in these forms. It is essential to get a professional therapist or other clinician to help you do yourself justice on this form. As you know it is a major project just to complete these forms and the more help you get the better. You need to use specific language and describe in minute detail the difficulties you experience when performing your ADL’s (I know you know that acronym by now….). AlSO and very importantly, you need to describe your abilities/disabilites as they are experienced on YOUR WORST DAY. I cannot emphasise this enough. Re-do the forms with advice and you may not even have to go through the appeals process. Good luck to you. What a pity you must dedicate so much of your precious energy to this task when you really need to conserve what you can to fuel your recovery. Good Luck.

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  79. Oh, Kate. I’m so sorry. But it is better to vent than bottle it up!
    Scamp is correct, this happens here in the US a lot. Today’s not the day to consider it, but I hope you’ll reconsider and decide to appeal. So often in this country, that’s what it takes, butting one’s head against the walls they toss up, till finally they say, “OH! Yes, you really are what you say you are!”

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  80. I had to hire a special company to assist in my application for disability benefits here in the USofA. Many folks I know who applied without assistance were turned down and they seemed to be far more disabled than me. It is all about how to fill out the forms, it seems, rather than how disabled one is. (Not saying I am not disabled, I am, but more mobile than some.)

    My advice: get advice from someone in the know or a lawyer and re-apply. You have nothing to lose.
    All the best,
    Caryl

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  81. UGH! I swear they automatically refuse a certain percentage of applications that come in and try and fob you off… Might it be worth responding to their “you can do this and that” and say “well actually I can’t” and see if they will reconsider your application without having to go to tribunal? Waaaaaaaaaay back when I was a lot iller, I got the care component increased by submitting a brief paragraph of a letter detailing the relapse (I handed back DLA for life award in a remission only to have to reapply again 6-12 months later!!).

    Do you have Citizens Advice Bureaus in Scotland?

    ARGH at the system-and i completely empathise if you don’t take this further at the mo, fighting is hard work.

    I hope you manage to find some smiley stuff to do/distract before the op.

    x

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  82. For what it’s worth, I agree with previous comments: Write up something for the national press. In the meantime, I continue to send you best wishes.

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  83. I too am furious for you! Knowing what someone here in US went through in a similar situation, I am fervently hoping that Nikki’s suggestion will be helpful. It took a disability attorney to achieve success for the above guy, and it sucked but was worth the anguish in the long haul.
    Vent all you want! We are here for you and want to share this crappy load of yours!

    With tremendous affection and fury! Anne

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  84. Kate – don’t let the b******s win. I’m sure they hope a certain % will just walk away after the first no. Marshall your resources, use any help you can find and fight.

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  85. That is so shitty! The failed application, I mean. I am sorry. But I too think I would not have the heart to appeal either. I know how humiliating that would be. I would be tempted to just file the letter and supporting documents in the nearest bin. Not that I am suggesting this as a course of action. Maybe you could step or stomp on it a few times on my behalf, provided that your legs are up to the task and you have enough energy, of course.

    Anyway, good luck and best wishes on your heart procedure later this month. I hope you have a lovely weekend.

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  86. How wildly frustrating, and completely illogical which just makes the whole thing worse. Do you feel even slightly better at all after writing about it? I think you should go there in person — when you are ready — and really explain to them what’s-what. They don’t know who they are messing with, clearly.

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  87. How dispiriting, Kate, they are bureaucratic idiots. I know you probably don’t have the energy for it right now but I second the suggestion that you contact some of the disability groups like Headway, I’ve heard very good things about them.

    Sending much love, patience and strength.

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  88. This happens in Germany, too. You have to fill out humiliating questionnaires, turn your inside out and at the end you are told that your are – actually – a healthy person with some minor problems which you can solve if you only want to. I don’t know what kind of person is dealing with these issues. You might think they have to pay for the services or whatever you receive (e.g. a taxi to get to hospital) themselves. No understanding for the situation of the individual. This is really, really sad and significant for the times we are living in.

    As the others already said, I wouldn’t accept the “no”. Keep trying and get what you deserve.

    Greetings
    Anett

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  89. What a ridiculous and horrible situation. Do go through the appeal – it won’t be any more pleasant but it may cause them to think twice before refusing another person in the same situation.

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  90. I’m so sorry to hear about the holiday, the delayed op and the DLA. My son has DLA but was initially turned down, I so didn’t want to go through the appeal process but gritted my teeth and wrote a letter saying I disputed their decision, giving reasons why and stated I wanted to start the appeal process. They then awarded him lower rate DLA without going to appeal. The whole DLA process is so random, I’ve heard so many stories of people with the same disabilities being awarded different rates to each other or no DLA at all, I even heard one case of twins with the same disability, one got lower rate, one got middle rate. As other people have advised, get in touch with a charity that advises on filling out DLA forms for your disability, I recently went on course on filling out DLA forms and realised that I had made several ‘mistakes’ on the original forms I filled in, as someone else said, it’s about knowing the right words.

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  91. Oh Kate – keep trying!
    My friend who was diagnosed with MS a year ago or so finally managed to count as disabled (she needed a parking badge as parking in St Ands is very tricky as well as some uni-related stuff) and it’s worth persisting. It’s irriating, infuriating, mindnumbing, but it’s worth it.

    Shame about the holiday, but… erm… I’m sure Fife’s dreadful weather would have made it across to the Hebrides and you’d have been blown away. Or something. Come up for a gentle stroll on the beach when the silly Open golfers are gone…

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  92. Gah, this all makes me very angry. It’s so often very painful to see how politics affects individuals – it’s easy to get riled up about the principles behind it all, but this sort of thing is exactly why the results of the election were so troubling, really. Yours is not even the first such story I have heard, it’s terribly unfair – for Them, it’s a bit of paperwork (okay, a lot of paperwork) which either goes in one pile or the other pile. For the person who spent hours condensing their life into aforementioned paperwork, it’s just that – their life. In the wrong damn pile. Injustice on an individual level really brings it home.

    The appeals process does sound horrendous but perhaps time will bring energy – and patience with a system quite undeserving of it. You could try contacting John Horan (I think you posted a link to one of his articles recently) for a word of his advice — he’s ever so passionate about this sort of thing, and argues for a living.

    The cancelled holiday is just the icing on the (burnt) cake… grr.

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  93. I think that while the specifics may differ, the main points are the same between your government and mine (U.S.) – government fail. Government cruel. Government so afraid of the stereotyped mythical nemesis that they just stop drawing distinctions. I am so sorry that you’re put in the position of having to fight so bloody hard to claim an identity you’re trying so desperately not to own forever. My husband is profoundly dyslexic….truly cannot read….and he has a PhD. He was often in the position of having to argue desperately that yes he is disabled, and that just felt terrible, on top of having to deal with the disability, too.

    And you don’t need a lone little voice from New York piping up to tell you this, but I will anyway: you are not whining, nor does it sound like you’re asking for sympathy. Good luck with this, I wish you well.

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  94. I am awfully sorry to hear all this Kate, but I really have to compliment you on realizing that one silver lining of the whole thing is the apropos deployment of a LOL-Althusser, because how often does that happen in the average day?

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  95. Kate, I am disgusted by this decision. So mad that I sent a comment to the Department on their web site inviting them to read your blog and then be prepared to say you are not disabled. Please appeal this decision. It seems many people are getting help that they do not need.

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  96. What a mess. I’d like to say I’m surprised, but I’m not; the arbitrary manner in which many governments decide and encode the rights, abilities, and identities of their citizens is so awful. I wish you peace with this, in whichever next step you decide to take. I’m glad you were able to vent your very deserved frustrations. Good luck.

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  97. Dear, angry Kate (and quite right too!) you need to seek advocacy from somewhere like the British Stroke Association. My husband had to apply for Attendance Allowance and the forms bamboozled both of us. We got help from Macmillan filling in the forms and he was granted the benefit straightaway. They knew the right words to use to “win the prizes” and put details in there that we had never even thought of, even though they were accurate! We are both university-educated people, but if you don’t know the “trigger words” you don’t “win”.

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  98. Have you spoken to Headway at all? My Mum had a brain haemmorraghe a few years back, and Headway were brilliant at offering advice with the DLA forms.

    *hugs* filling them out is horrible – you should bbe celebrating how far you’ve come, not how far you still have to go..

    Anyway, the website is http://www.headway.org.uk/Factsheets.aspx – if you want any advice, please don’t hesitate to contact me!

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  99. Kate, too many sucky events happening at once. Give yourself some time to be angry and disappointed, then why not take that suggestion and write something for the press? Take that extra time before surgery and get it out there. And find an advocate, get some more help shouldering this fight. Know that you are in the thoughts of so many people who care about you, who wish you strength and who are inspired by you.

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  100. I am sorry you are going through this but I am glad you mentioned it. I believe in the USA it is also typical to be first turned down for disability benefits (somewhat similar to recognition, I guess?) and to have to appeal. I feel that we need to hear from those who can point out what’s wrong with the system from their own personal experience–we need to hear this loud, we need to hear it now. But I’m sorry you have to be one of the voices.

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    1. Yes, I believe this was true. My uncle had to apply for disability after he had lots of heart problems and was told that basically, almost everyone gets turned down the first time they apply. You have to go through the appeals process. Which is extremely unfair to those who need the benefits to (apparently) weed out the ghostly few that are trying to “get away with something.”

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  101. I’m very sorry. That makes absolutely no sense. (I mean, it makes sense that it would happen because governments are like that, but in reality, makes no sense.) I think you should appeal. And not hat in hand, march in there crutch in hand and explain that yes, you are disabled, and I’d like assistance to return to work. Unfortunately, self-advocacy is necessary for the simplist of things, and possibly one of the ways to weed out things they have to pay for is to deny some and see if anyone speaks up. Good luck to you!

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  102. Absolutely you should rant, and this is your space to do so. How appalling that you are not recognized as disabled! It is wrong, imagine if you did not have such a partner in Tom. Health services are grim here in Canada as well. Your energy should be all about healing, not this crap.

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  103. The DLA form is hideous beyond description. My own understanding and experience of the system is that the people who deal with the forms are not medically qualified, your DLA entitlement being judged rather by a list of boxes ticked or not ticked. That said, DO appeal. Talk to them. It’s just a bunch of people at desks doing a job.

    Don’t let some clueless wanker deprive you of the help that you need and are entitled to.

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  104. You have every right to be angry. As Scamp mentioned above, here in the U.S. the process is equally awful. And it would seem the majority of people are rejected the first time they apply–with not much rhyme, reason or regardless of the severity of their disability. Having gone through the process twice for a disabled son, I know the hideousness of it all and understand your very justifiable anger. At least I was able-bodied enough to do the paperwork, track down all the doctor’s recommendations, etc. that was involved in the application process both times. I can only imagine how much more difficult it is for you to summon up the energy (and it takes an ENORMOUS amount) to appeal this finding. My hope is that, awful as the task is, you are able to do so. Thinking of you and wishing you the best of luck.

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  105. I HATE if for yah! Ferkin govmint. I read the whole post and when I got down to the Q&As I realized where (based on personal experience) you might have gone wrong in your paperwork – YOU TOLD THE TRUTH! I hope there is some kind of appeal process. A while back, I applied for a position with the county and was told that I was banned from EVER working for the county because I told the truth (under pain of being prosecuted for perjury, they warned) about having experimented with drugs – IN THE 60s! Brilliant! The young pre-felons on either side of me who lied on their apps got the jobs – and have since been fired for various offenses.
    In this country there is a whole cottage industry of slimy lawyers who’s sole purpose it is to tell you how and when to lie on disabilty applications and charge prettily for their services. I hope you don’t have to go that route to get simple recognition of the facts of your situation.

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    1. Not just lawyers, at one time the government employed people to help you fill in the forms. It is an art in itself and with “professional” help most people receive their allowance and help.

      This is of course totally wrong and how less educated people even manage to fill out those forms I will never know. I had to do one for my Mother, they are a nightmare.

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  106. This is outrageous Kate – how humiliating, infuriating, and frustrating for you and Tom. I know that pursuing it further demands valuable reserves of mental and emotional energy, but perhaps you could write to your MP/MSP?

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  107. So sorry to hear that a combination of events have conspired against you this last few days. I can’t begin to understand how frightening and physically traumatic it must be to have a stroke, or in that situation how exhausting to complete long-winded forms. But for your honest appraisal of your situation to be rejected is a kick in the teeth too far. I hope you have the strength and stamina to challenge the DLA decision. good luck and best wishes for a better week ahead.

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  108. Your feelings and experience are echoed across the globe. Here in the USA, many folks go through the same. Somehow, once the bureaucracy gets involved, anyone who applies must fit into the exact little box that they have fashioned. I watched it with my son who has learning disabilities; I’ve watched it with another son who has physical disabilities; I see it everyday because I work for an agency that helps folks with disabilities get back to work. I do have to say with some pride, though, that our agency does a better job MOST of the time addressing the individual and unique needs of our clients, however, we employees are still marched into the box that the government locks us into. Very, very, very frustrating for all who are involved–except, of course, the government who fashions the box on a form, never once becoming involved in the very real lives of the people it affects.

    Kate, deep breath. You are brave in a world where bravery and challenges are a way of life. You are the kind of person who will be able to challenge the system because you have such a good brain and can articulate the reality of your experience better than many who face these same challenges. I imagine that at this point in your recovery and at the level of discouragement that you currently feel you aren’t seeing yourself as a torch bearer, but believe me, your writings are already reaching people who can and do make a difference in the lives of others.

    Take some time to breathe through these latest set-backs, but know that we (and there are so many of us!) are behind you, cheering you on, taking your words to heart, and taking your words to people we know who work in the field of disabilities and brain injuries. I only wish I were in a position of power to make the sweeping changes that are needed in a system that needs a hell of a lot of work to get better. I have to remind myself daily that a pebble thrown in the water makes a ripple, but together we will become the rock that gets thrown to make the waves!

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  109. Thank you for sharing! I found your blog shortly after your stroke, and have been fascinated as well as inspired by your progress (physically, mentally, emotionally, knitterly). Knowing how the system works or doesn’t is important for anyone who votes or would have the ability to make a change big or small. And I think your moan above is a very careful and considered evaluation. I thought I had found a knitting blog, but really this is so much more interesting. Good luck with your recovery!

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  110. It’s terrible that they would just reject your application without investigating in any way. If they had doubts, why didn’t they send someone to evaluate the challenges you face in a day or even say have an interview with you THEN decide on your application. Oh wait, that would actually make sense for a bureaucracy to do research before making a decision. Good luck, I hope you’re able to have this decision challenged and over turned.

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  111. I don’t think you should be apologising about any of this, Kate. As plenty of others have said, there is a real need for someone as articulate as you to enable the rest of us to get more insight into disability. I am virtually speechless about your experience with the DLA and could almost weep at the inhumanity of it. I really agree with Charlotte up there, though – if you have the energy, getting something in the national press seems a very good idea. Sending you lots and lots of good wishes, and also many commiserations about the broken ferry. Just what you didn’t need.

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  112. I don’t feel like you are griping without reason, or that you are looking for a hand out. I think we all ‘get it’. I know I always send links yto podcasts and videos but once again I though of you upon listening to one. RadioLab had a show called Where am I?
    http://www.wnyc.org/shows/radiolab/episodes/2006/05/05
    Where they discuss proprioception, the sense of self and a man who lost the ability. It sounds like some of what you are struggling with. Be well Kate. We back you.

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  113. I think it’s incredibly important that you use this space, your space, to vent and explore these things. I really, really feel for you and I am sorry that I can’t think of anything especially helpful to suggest. Getting angry is a good thing though and I think you should try to write something in the national press regarding exactly this matter. It touches hundreds of thousands of people, and if I were you I’d try to approach a less obvious outlet – so not the Guardian (though try them too), but perhaps The Telegraph. I know it sounds odd, but that way you would reach a larger audience and one that might need its values and attitudes challenged.

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