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coming to terms with no longer maybe fitting in any box

good morning all, hope you all are well, for a bank holiday weekend, sitting inside, which isn't uncommon for me has brought on a new or different meaning, having failed now 2 times over a 20 year period my latest ESA assessment, with a 0 point score, being honest, and then only seeing one side of the interview written down, i feel let down by the system in general, but also sad as nothing tbh is now taken into consideration, mental health, mentioned but not recorded, hospital and doctors and consultants notes and any medical history over the last 20+ years or even ongoing treatment, just what half of what i say and on the day, face to face, which now i feel, somewhat lead by, as the questions seem rather loaded, how can you do, then giving a amount, when none fit the box which is your illness on a daily basis, after spending the last 20 years, out side one day out of 7 in any given week, i do think my life has been wasted, none productive, spending time with online friends, in a fantasy world in my own bubble of my own making, looking back i wish things were different, but as i can't turn back the clock, i can only look forward, i'm in my own world of my own making, but i'm safe and feel happy in my home, outside isn't the place i'm comfortable with, lack of toilets, too many people and the feeling of not being normal, makes it not as safe and happy as being inside on my own im my comfort zone.

im now left with a choice, which first part the recon letter already sent, but reading between the lines and having a lot read back to me, makes me wonder if i no longer fill the boxes offered, so while i've done the Tribunal once already 12 years ago now and won, is it worth it? or to go down another route, and see if universal credit is more that fit my box? as i was on incapacity until that was replaced, and now i've been on the borderline for ESA in the support group and have now failed the assessment, being honest makes me feel somewhat angry, but already been told at the job centre that i can't sign on for JSA either, as i'm not actively seeking work, as unable to work because of being ill on a day to day basis, so what are now my options? find a employer who will let me come to work on the days i'm well? and then have time off when ever i'm ill? can't see that happening any time soon,. lie and break a habit of a lifetime and say i'm actively seeking work and sign on, just to get something to live on and survive for a while longer, but not hold my head up high any longer in the process? as far as i can see it, i'm borderline at best but unfit at worse, but are being worn down by the fight and stress, which is getting my and my partner down, lack of money, lack of help and support and apart from nice comments on here, feeling somewhat alone atm, friends are all online, don't go out to have a social life, and family has enough of there own problems for me to keep dragging them down and parents are too hold to keep upsetting with asking for hand outs etc and no longer being working able to help either, atm moneys not the issue, that will be a few more months down the line, but not sure the mental health and well being by then i'll be in the right place either to help myself, got a few meetings planned for more advice, but overall the outcome looks like Tribunal is the best chance for now, but surviving the wait, will also take it's toll, as like i've said, been down that route before, and know how it effected me and my relationship last time, so can't honestly say i'm looking forward to it, or getting into dept if it takes too long in the process, so anyone else on the borderline with any other thoughts? universal credit an options maybe if i fail this? as partners already on tax credits for low income, as i'm not sure ESA is fit for my purpose any longer, as the goal posts seem to have moved too much, and i'll hopefully be fit enough for longer so i won't be able to get disability either for a long time, as while i'm unwell, it seems not enough for that, and never want to be worse either tbh, so sorry for the novel and any advice welcome,...

Replies

  • poppy123456poppy123456 Posts: 15,130Community champion Disability Gamechanger
    Hi,

    The world can be a very lonely place for a lot of people, even more so for those that aren't able to go out for various health reasons. Sadly, i'm one of those so i know exactly how you feel.

    To answer your questions about which benefits then here's some thoughts for you.

    JSA is no longer possible to claim because all areas are now a full UC area and have been since mid December 2018. New Style JSA is possible for those that have worked and paid enough NI Contributions in the previous 2 tax years before the claim but as you've been claiming ESA then this won't qualify you for New style JSA.

    UC limited capability for work is exactly the same as the ESA criteria and the descriptors for both LCW (WRAG) and LCWRA (support Group) are identical. UC is also means tested so you will have to claim this as a couple with your partner, as i assume you're living together?  Any tax credits/housing benefit that's being claimed will also transfer to UC and become 1 monthly payment.

    Claiming UC when you're not fit to work isn't the most ideal benefit to claim because of the claimant commitment. You will most likely have to do some work searches/job centre appointments because very few work coaches will turn off your commitments.

    At the moment once the Tribunal accept your appeal you'll be able to go back onto assessment rate of ESA BUT if you're claiming just Contributions based then this is only paid for 365 days then it stops. If you're placed back into the the Support Group then it's paid for as long as you remain in the group.

    You could put all your details into a benefit calculator to see what it comes up with for the UC payment. Believe it or not some are actually better off on UC. It's also means tested so any savings over £6,000 and your money is affected. £16,000 and over and you won't be entitled to any UC.

    Going back to the ESA, do you know the reasons why you were previously placed into the Support Group? The goal posts (descriptors) haven't changed in many years. As it's mental health then is it possibly reg 35? explained here. http://www.cpag.org.uk/content/making-exception


    For the support group you must satisfy at least one of them the majority of the time.

    For the Tribunal, you need to concentrate on the reasons why you think you should be in that group and why. Waiting times for hearings are huge and a lot of areas have backlogs in excess of 1 year. Appearing in person will give you the best chance of a decision in your favour.

    Hope this help a little, at least. Good luck.




  • zakbloodzakblood Posts: 419Member Pioneering
    i was on incapacity for most of my 20 years, then when that changed was moved onto ESA and have always since been in a support group sorry not work group, reason where and still are the same, looked at all of my last 5 forms filled in and tbh nothing has changed regarding boxes or information supplied, its not altered, as i always have said what i can or can't do varies from day to day, some are good days, most are ok days, so are just plane bad, and any activity depends on how i am on a given day, have 7 issues with main one being spondyloarthropathy, spondylarthritis / inflammation of the facets joints with canal stenosis with posterior disc bulges at L2/3 and L3/4, sagittal and axial T1 and T2, degeneration of lumber spine
    and was told at my last assessment i wouldn't need another, only 4 years later, to get one and this time score 0 points, which makes a mockery of the last 4 imo

  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    Been there done that. I had no choice but to go on jobseekers with the minimum job search g activity after losing esa. I got a good jcp advisor who has helped me a lot getting me extra help from schemes like Samh job coaching. A long as I show willing to job search and undertake some activities then they are satisfied. I've done volunteering. Online courses. Adult learning courses. Etc. She understands it depends on my health on the day what I am able to do as extras. Through Samh support I got part time work under the permitted work rules. That works for me. I basically fake it till I make it which was extremely hard at first but gradually eased off. I'm not saying it's ideal but it was all I could do at the time. For now I don't have to go down u c route but we have discussed it. I think it helps to get a decent advisor to support you at your pace if possible. Good luck.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • zakbloodzakblood Posts: 419Member Pioneering
    edited June 17
    seems after this mornings trip to the pain clinic, i'm no longer ill at all, well not with the first issue i had, just a bad back, seems that sorted it self out way back in 2012, first diagnosed back in 1999 after two years of physio, but now don't understand why no body told me or altered my meds or even gave me other options, but now it seems, my backs sorted bone wise, but i'm left with the symptoms of long term meds and acute pain from 20 years of bad posture effecting how i walk, sit, stand and bend, so while someone younger with less time like it may take 3 to 6 months to re train there bodies to strengthen there weekended muscles from so much none use and incorrect posture, my age 52 next and 20 years of not knowing anything about it, has made it worse, while my whole muscle set has gone to a point where now i can no longer support my spine, hips or legs for normal use, so need long term physio of at least 2 to 3 years to re train and strengthen my muscles and learn again how to sit stand and walk correctly, well you learn something every day, the pains the same, told that's because the muscle spasms which is the same pain as the back and sciatica i also had way back such a long time ago, seem i need to re learn everything.
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