Monday, 19 August 2013

Success? I'm just knackered

That moment you cry with relief because finally... finally after two years, you've successfully negotiated the maze of an 18 month claim for disability living allowance, rejection, appeal, near-tribunal, work capability assessment, Support Group, social services in a system that no longer recognises moderate needs, 8 assessments for care, Dave on crisis leave from work to look after us for 5 months.

At last! It's all done!

After endless months of explaining to endless strangers how you are disabled, time and time again, telling those strangers things you don't tell your husband.

Then the moment you cry because you realise you qualified for them all. You needed them all.

That's when you don't have much choice but to explain it to yourself.


  1. What a sad state of affairs we humans are in when we need to fight each other tooth and nail to be able to survive.

  2. Oh Sue,
    Sad you had to go through such a fight in the first place but so pleased for you that you are finally through.

  3. So glad that you came through - but so saddened by what you and so many others have to undergo - it is inhumane to make people suffer so much in addition to why you/they are claiming in the first place. Our society stinks why do we put those who already suffer so much through so much additional suffering?

  4. Phew and your crime..... getting sick..... I'm waiting for them to tell me I'm cured... that I don't need support to live... that my existence is getting in the way of their plans to cure us all.... who knew compassion was so costly... great news for you sue XXX

  5. well done, I have been put on JSA cos I only got 12 points, spend over 40 hrs a week now applying for jobs I know I cant do because I have to, awaiting my appeal date! even my benefits advisor told me to appeal ? WTF

    1. Perhaps you should further limit your choice of jobs. That's what this FOI says you're to do and this is the relevant passage "A person can claim JSA even when they have a fit note from a doctor or
      other medical practitioner. A determination, following a Work Capability
      Assessment, that a person does not have limited capability for work is
      based on what an individual can do, rather than simply a diagnosis of
      their medical condition. The determination applies across the social
      security system, including JSA. Jobseekers may, however, restrict their
      availability for work in the light of their condition."

      Well done Sue for navigating the minefield.

  6. Well done Sue, it wouldn't have been right if you hadn't qualified, as you set the examples most people follow, so nice to see justice and common sense prevailed.

  7. Emotionally drained as probably all your family are too.
    This is clearly wrong what has happened and frustrating beyond belief! I admire your courage as to go public with all of this as I would never ever dare been through a lot of this and going through it. This is a learning curve as things change to a point you nor professionals can keep up.
    A big cheers to you all and yes seeing repeated assessments written about you and all aspects is so so teary, really should you have to? surely it's obvious and medical notes should say that and marked TLC to avoid having to deal with so many and reveal what is not necessary. Heartbreaking really.
    I m glad you have got you health as stable as it can be and it is truly remarkable.
    Wishing you and all your family all the very best.
    It does feel wrong saying well done but as once described to me to manage all this you need a degree and a sprit level.......think all spoonies will understand that.

    1. Whoops.....spirit not sprit! He he.

  8. its hard sue for all has you becoming higher profile even wining doesn't hold much joy has of the battle to get there yes you never tell all to our partners if they new it could hurt them more nah we suffer why should they suffer more has of it,but winning well its sad that we have to go through all this a very carring government who see more of daily but keep posting showing even thou we are disabled and illness does affect us greatly they are not going to get us to go quietly jeff3

  9. well done sue

    my tory mp has had to take on a lot of my work with the DWP and the police just call in now and then to see how i am which is nice

    I'm stick in a rut at this time still on IB and have been waiting the past 6 months to get into the very select support group of ESA

    i have a neighbour who is on it but she says it's hell as she not allowed out like me the DWP compliance officers come round your house and have a good look round and play with your mind and imply if you ever leave the house your benefit payments will stop

    they always say however when challenged by the police did they say it and they always deny it by they sure as hell imply it

    you must always have no matter who you are that if ever a compliance officer wants to come round your house you must always have a professional witness with you like your NHS carer etc lawyer just so that you are covered in what not only what has been said but more importunately what the compliance officer meant and if you can get the meeting recorded so the police can look at it to make sure what has taken place is legal

    The police advised me that this is the best action as it protects all parties as what cant speak cant lie

  10. Oh Nick that does not seem fair. I know people in the support group who go out and about why can't you?

    1. Hollie it's just bad luck i guess i do go out once a week but it's never more then an hour as have been reported in the past many times so you never can tell who's watching you and reporting you

      of course once reported your benefits get stopped until the DWP compliance officer been round to find out about why you were out and you have to give a valid reason because someone's reported you for being out

      And then provided the reason is valid your benefits start up again

      it's not a good way to live but have been like this for years so you get use to it

      the compliance officer doesn't help as they can be very strict with what you can do as they always result to the fact that your ill so why are you out

      I get DLA so that gives me a little room for manoeuvre and my wife's my carer but if you live alone it can be very tough indeed in even contemplating going out as you sure don't wont DWP compliance officers round your house

      There's no need to live in Burma I'm already living it

      my tory mp is a little help could do better maybe if he ever falls very ill we will end up best of mates but until then life's going to be very tough

  11. I'm glad to hear that you've finally 'won' (even if it's something you shouldn't have to fight for). It gives me hope that one day I will finally get some positive news for myself on this front.

  12. off topic
    but maybe sue can answer. On the high rate of mobility allowance you can get a car from mobility but why cant you get a car on the high rate for Care component ?
    don't people on the high rate of care need to have a life
    i did put this question to them but the girl i spoke to could not give a valid answer

    as i say maybe sue has a better answer

  13. Congratulations! I recently went through something similar (with a private insurance company in the U.S.) and won and it was a huge relief! I thought I'd be jumping for joy and wanting to go out and celebrate that night, but I stayed in and watched a movie and went to sleep early. Like you said, it's exhausting, and it comes with the mental and emotional effort of having to accept our own needs. I'm still dealing with the government benefits, but that feels less stressful now that I've convinced the first group of strangers I wasn't lying. Sheesh!

  14. Make September sick'th (6th) the official day of remembrance for all those who have lost their lives at the hands of atos, dwp and the coalition government. TENS OF THOUSANDS of sick and disabled people have died or committed suicide due to the conservatives new reforms and attack on those who are vulnerable with their policies and negligence, atos' s negligence, lies and false reporting just to increase their profits and the dwp for taking part in target performance for reducing benefits.

    So at 8pm on Sept 6th each year those who can make it to a prominent place in their city, town or village to hold a candlelight vigil at 8pm (just after sunset) and at 8:20pm please take ONE MIN SILENCE to remember those who are now longer with us. and for those who cant make it out to one of these mass gatherings show your support by placing a single white candle in your front window.

    Please share this event and invite all you can It's time to remember those who should still be here!!!

    Meeting points so far

    Norwich - Forum (co organiser needed)
    Plymouth - City Centre by the big screen
    Cardiff - Bevan statue, Queen st (organisers needed)
    Bradford - Centenary Square/City Park (organisers needed)
    Liverpool - Mann Island Pier Head (organisers needed)
    Leicester - The Clock Tower (organisers needed)
    Barker's Pool, Sheffield -in front of City Hall (organisers needed)
    Portsmouth - ATOS offices,Commercial Road.
    Bradford - Centenary Square/City Park - (organisers needed)
    Northampton: All Saints Square - (organisers needed)
    Bristol - Job Centre- (organisers needed)

  15. Well done Sue - I know what an achievement it is and how reluctant you were even to apply at one point!

  16. Congratulations Sue :)

    So pleased to hear that you've finally won through and have been awarded the benefits to which you have always been truly entitled! And I sincerely hope that, now you've had a few days for the news to settle in, you and Dave are able to relax and get on with your lives. When I went through the change-over from IB to ESA, I know how fortunate I was that it went 'smoothly'. But when I heard that I'd been placed in the ESA-Support Group I spent the next three days alternately crying and sleeping and re-reading the letter (which I misread the first time so had gone into another panic!) Of course, I still have a mini-panic every time a letter lands on the doorstep in case it's a re-assessment but I've always had envelope-fever anyway;)

    Again, my congratulations; and my heartfelt thanks for your blog which helped give me strength and armed me with knowledge and resources to help my own case and those of a few friends.

    Much love and many hugs to you and yours,