Missboro11 years ago

I am currently appealing the ESA decision as i have been put in a work group so im having to claim JSA while going through the appeal. I wasnt going to appeal as i couldnt be bothered with all the stress as ive gone through it all about 4yrs ago, luckily i won that appeal. I made my claim for JSA then she made an appointment for the next day for me to see a job adviser. When i told my job adviser that i wasnt happy about something that was put in my medical report from the health care professional he told me to appeal. She said that i was able to put my bins out and the annoying thing is that was not even mentioned at the medical. I dont even put the bins out as my neighbour does it for me so here i am having to deal with the stress again but as CAB told me i cant let them get away with it as its giving false information. Apparently if you claim JSA they are getting stricter as they are now looking at what you can do and not at what you cant do. The job adviser will ask you what sort of work you think you can do and he might refer you to see someone who deals with people with disabilities and give you help and advice in getting back to work. I get JSA but you have to agree with there terms of agreement of looking for work or you wont get any money. Aswell as the PBC i suffer with chronic pain in my back, osteoarthritis in my knees, pains in my feet and ankles and im in alot of pain now and having physio on my knees and have bad fatigue. I wish you luck in your appeal exy21.

exy21 in reply to Missboro11 years ago

Thank you

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Hidden11 years ago

I work full time with all your symptoms and more. I have PBC, hypothyroidism, Sjogrens, scleroderma, osteoarthritis, anaemia and vit D deficiency. Having a chronic condition does not necessarily mean you cant work, its more of a case of finding something that you can do.

exy21 in reply to Hidden11 years ago

Thanks for the sympathy thought it was only people with no understanding of these illnesses that say such things. I worked hard and sometimes 2 jobs to have the life i enjoyed. I have spent many years fighting these illnesses and not accepting they're limitations, always making myself worse. I retrained/studied when I wasn't as ill as I am now to get a job as previous occupation was never going to be an option to go back too. As I want to work my body won't let me and having to defend myself due to people's inability to understand is very frustrating but I try not to take it heart. How lucky you are to have a job/ income all the things that go with it. I miss that sense of worth a job gives you and the pay packet at the end.

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exy21 in reply to exy2111 years ago

I have pbc/aih/ sjogrens and crest syndrome. Calcification in my joints as well as thinning bones, awaiting results of bone density scan. Also crohns.

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Hidden11 years ago

I,m not quite sure where that came from exy21........ Think you have completely misinterpreted what i was trying to say. i was merely pointing out that there is light at the end of the tunnel for any of us. I couldnt get on any benefits apart from JSA when i was out of work a few months ago, despite the fact that scleroderma is extremely serious and some of my lung function is down to 50%, so actually had no choice but to get back to work. I wouldnt count myself terribly lucky to be honest in a lot of ways.

Neata11 years ago

Hi inked up good luck to you I am envious of those that can work,I to fought with PBC and it's related diseases for over 10 years before I had to give up a career I loved.

To exy21 I sympathise the minefield that's called DWP, ATOS is a really tough road to go,I must have been one of the lucky ones that didn't have to go for a work related interview,although I did speak to the disability team who encouraged me to keep fighting for the support group,I understood it to be once a month contact with an adviser,and remember the best way to get your appeal paperwork and supporting documentation to the person whose dealing with your case is to get the job centre to scan and then email it all to them

Best wishes to you both Neat

exy2111 years ago

Thank you so much for information. My doctor has written an letter in support of my appeal and waiting for specialists letter before i send in as even though I sent a recorded letter it has gone missing thus prolonging the appeal. On bad days I really hate my body that it works so wrong. I have lost my career/ friends/relationship and the chance to have a child but on good days I'm here surviving with my lot and being as positive as I can.

Neata11 years ago

Lost post within the DWP I'm not surprised you can send it by special courier or carrier pigeon but sadly the person in the post room is the one that directs your post after it's been opened!

Remember photo copy what your sending and make a note of date posted and always do a follow up call 5 working days later ( it takes 4 days from post room to recipient within DWP ) to ensure they have received it,which is why I say use technology and the job centre I had to make an appointment but they where all very helpful .

I really miss my regular calls with them,strange ,but some days they where the only ones I would talk to.

I'm about to start com pilling my paperwork for next year and top of the list is the letter from my MP and an apology from ATOS regarding my medical

Remember date, time,persons name

Tessa in reply to Neata11 years ago

Hi Neata, did you actually get an apology from Atos?

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mumofthree11 years ago

Hi exy21

I can but only imagine what you are going through. It makes me really mad why it is made so difficult for the 'genuine people' who really deserve all the help they can get but have to fight all the way to get it. You've got enough to put up with as it is without the added stress and worry. My sister fought for three years before she got any help, welfare rights stepped in to help her. I don't know if it was exactly the same as you though as I don't recall her mentioning support/work groups, she was still employed by the NHS at the time. She doesn't suffer with PBC, she had undergone brain surgery and had to learn to walk again. She still struggles to walk, has to use a walking stick, has to be accompanied every where and is now epileptic. She was turned down because she could turn the kettle on and use a knife to cut up sandwiches her husband prepared for her while he was at work.

I was diagnosed with PBC in Jan 2011. I work part time for a large organisation, office work, where I have been employed since I was 18..I am 52 now. I know exactly how you feel when you say you hate your body. Its so frustrating that your body is ruling you and not the other way around. Before I was diagnosed my symptoms were severe joint and muscle pain and fatigue but I had put it down to possibly having arthritus and feeling tired because I was overweight. To say I was shocked is an understatement when told I had this autoimmune condition.

I don't think people really understand how debilitating fatigue is. I find it so difficult to even function some times. I get so exhausted I just fall asleep. I have a very short concentration span and have to read things over and over again before I can make sense of them and the writing moves all over the page. When at work I really have to fight the fatigue and concentrate really hard. I have noticed that it does take me longer to get things done. Its only a matter of time when this is really going to have an impact on my working life but up to now I am managing. My boss is aware that I have PBC but I don't think she fully understands what it is and as long as it is not causing problems with my output she's happy. A couple of my close work colleagues also know and have learned to read the signs and just say 'not a good day today?'. When you have previously been so active physically and mentally its so alien to feel like this. When the time comes that I may have no choice but to give up work I don't think I would have the energy or could even face having to 'beg' for help, and it shouldn't have to be like that.

I hope everything works out for you but try and keep your chin up. Big hugs sent your way

exy21 in reply to mumofthree11 years ago

Thank you so much mumofthree

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Neata11 years ago

Tessa yes I did get an apology from ATOS it came via a manager at the DWP in a phone call and then in writing from my MP who had asked DWP to look into my case