Worried sick about PIP/DLA hearing

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Worried sick about PIP/DLA hearing

Postby cocobella » Mon Nov 10, 2014 2:16 pm

Hi everyone,

Warning: Stressful, ranty, disillusioned post below. I am literally ripping my hair out just now. Some of the stuff written below probably won't shock the majority of you, and it is sad that this is happening to so many of us.

I am worried sick and at my wits end now about my PIP/DLA appeal hearing. It is in exactly 2 weeks and there are some days I think to myself I cannot believe I am enduring this stress when I am genuinely in need. The 2 main things they seem to be using against me is a. I work part time and b. I look "normal" and was clean!!!!! WTF lol. :evil: :twisted: I have contacted legal aid and have a solicitor now, contacted welfare rights, citizens advice, local MP, GP, hospital consultants etc etc........received lots of evidence from them. Yet I STILL have to attend a tribunal. This was after ATOS apparently lost my first assessment report, then told me 5 months later. I then had to attend a second assessment and the assessor did not focus on all the factual evidence, she picked and chose what she wanted and constructed it in a way that I was disallowed by 2 points. I feel that my next avenue is the media!!

I honestly feel I am surrounded by incompetency everywhere, I asked my GP in writing 10 weeks ago for a letter or summary summarising all of my health conditions and how much they have affected me. I have other issues on top of fibro such as ....no thyroid....unstable tsh for 19 months....raynauds......and severe depression ( not sure if it social or chemical causes, or the fact that my physical illness has robbed me of normalilty). Anyway, GP has still yet to provide me with this letter and I just keep being told there are 2 GP's off sick in the practice and they are over streched. Thing is, this directly affects my health, because if I lose my appeal I am literally up sh** creek with no paddle! :oops: :oops: It is now 2 weeks before the tribunal hearing therefore no further evidence I send in will be accepted. So if my GP does provide the goods, it is now irrelevant. I also paid for hospital record copies over the past year, still not received them as the person dealing with it (who is within the NHS healthboard I WORK IN) sent them out late!!!! So again, another waste of time and money as the tribunals are no longer accepting evidence. I can take it along with me on the day but the chances are they will refuse to look at it.

On top of that I contacted my local MP 3 months ago, he wrote a big letter to Iain Duncan Smith addressing all of the systematic failings I have dealt with since applying for PIP in June 2013. About them losing my report, having to attend 2 assessments, and the ATOS report that seems to be written about someone else (definitely not me). Still no response. I chased this up last week and was told they are so sorry that this has been missed and should have been followed up 2 months ago!!!! What good is that? I am still having to attend this horrid tribunal.

I have a solicitor assisting me via legal aid and all I can say about him is that he is a dragon!! He told me it will be VERY difficult for me to obtain the 2 points I was dissallowed by. I asked why? since I have HOARDS of evidence, and you can clearly see that at 28 I am not faking it, I couldn't. On top of my fibro I have lots of test results in black and white that can be shown. Also the fact that after I finish work at 1.30 each day, I am in my bed for the rest of the day. (you guys all know the score if you work and have fibro, it is a general nightmare).
He said it would be difficult because I work part-time, I then provided him with a document from work showing how many days I was actually in the office in 2013, 15 days!!!!!!! out of the whole year. Yet the ATOS assessor stated I work 5 days per week 18 hours. When I had even told her I had barely been at work and ended up on ESA as my contractual sick pay ran out. I have fought to keep my job too as it is my only shred of being normal, plus I couldn't live without having a wage. Sometimes it is good forcing myself out of bed each day too, because when I have been off sick I end up severely depressed and have on many occasions took far too many prescription drugs out of being so depressed.

I then contacted welfare rights last week after feeling deflated due to my legal aid solicitor being very negative. I was told by the guy at welfare rights "going to the appeal tribunal is like sitting your driving test, it all depends who it is on the day" WHAT ON EARTH?? I then said, well that seems illegal and corrupt, if it depends on whos sitting on the panel and what mood they are in, surely that can't be true? This was an ADVISER from welfare rights telling me that? He then said he feels my case is genuine nightmare as I work. Again, I had to point out that the period the panel are looking at (19 months) I was BARELY at work, and still have a really high absence rate. I Think because my work isn't a really busy, demanding place I have managed to hold on to my job. I am lucky in that respect.

Anyway everyone, I am sorry for moaning but if any of you have suggestions I would be greatful.

Thanks

Coco x
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Re: Worried sick about PIP/DLA hearing

Postby bouncer0304 » Mon Nov 10, 2014 3:45 pm

I do feel for you. I was in that position a few weeks ago with my ESA hearing. With the right advice, i went from 0 to 15 points and support group all after a 30 minute hearing :O I found these tips helped me so hopefully it'll help you too:

*Have you visited fightback on facebook? They have a forum with handy tips there. However, as they're in demand, you'll have to be patient. They helped me win my case and gave me loads of useful advice.
*Have someone you know go with you. They won't be able to answer questions for you but they can add to what you've said or clarify it. My sister was a massive help on my appeal :-)
*DO NOT SAY YOU'VE GOTTEN WORSE! This is a trap many fall into and they will only compare you on the day to when you were assessed (so if you broke your leg the next day due to your conditions that wouldn't be counted). Say you're just as bad as you were then.
*Don't be afraid to get up if you need to. I was about to ask and got offered as they could.see how uncomfortable i was with the chair (or any chair for that matter!) i was sitting on. I think this actually helped me in some way!
*Any extra evidence can be submitted on the day and will be considered. I handed over some extra items. Also if you had your assessment recorded, take it with you. Most places won't be able to play it but that extra evidence will show that you're not lying. Usually it'll be decided on the day but in some cases, if they're running behind they'll send the decision by post and you should have it within 48 hours.
*They usually have cameras outside so if you say you walk slowly, do so.
*Always imagine the worst day/case sinario. If they say about shopping, stress it's in a place you know well. If you say you rest, say how often and if you need to sit down. Don't be afraid to say if something really bad happened before the assessment date as this will help your case. If you do something, stress how much of a struggle it is.
*Finally keep an eye on the clerk. When you've finished answering a question, wait for them to finish writing or typing or until you're asked the next question. Don't waffle if you can help it as it could go against you.

On the day, i went with my sister who helped me out quite a lot. She dealt with all my paperwork and i kept getting up and moving around. I wobble when i stand as sadly my balance is knackered and i'm gathering they saw that on the cameras as they do say any video evidence will be used. I went in there and literally they asked questions about my mobility. The doctor in there stated that she knew my conditions well so no explination was needed. I actually spoke to Fightback the night before and as they predicted, they didn't go beyond mobility with me. They also said that in a lot of cases, they've pretty much decided but just want to see if what you say and how you are tally up with what they think. It's scary to think about it but to be honest, i've seen only a handful of people fail their appeal. Majority win theirs and it'll continue to be like that for most. Considering it's two points, you should stand a very good chance of winning. After all,

I really hop you do well and wish you the very best of luck. When i won my case, it hit me only when i was outside and i couldn't stop crying for ages. As long as you have enough evidence they should be on your side. They are completely independant from DWP so don't worry about that. I thought i'd made a pigs ear of it and it ended well for me. I'm now using fightback to apply for PIP so hopefully i'll get it and when my date is up in two years time i'll use them again should they still be going then (i really hopes so). Please don't lose hope and please let us know what happens. We're all behind you :-)
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Re: Worried sick about PIP/DLA hearing

Postby denys » Mon Nov 10, 2014 6:32 pm

So sorry to hear you are suffering all of this it seems so unjust that because you are trying your hardest to keep working however small the amount you manage, that you are being penalised :!: :!: :!: :!:

I cant offer any advice but wanted to wish you all the best and I hope you are awarded those 2 lousy points :shock: :shock: :shock: :shock:
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Re: Worried sick about PIP/DLA hearing

Postby migrembe » Tue Nov 11, 2014 3:45 pm

I don't think the advisor is being negative at all, i think they are being realistic - if you can get out of bed every morning and go to work, stay awake and upright for 'x' amount of hours and then travel home you are doing far better than many of us on here. I don't think many win their claim for DLA/PIP due to the conditions you have mentioned if they are also able to work and if you can work then why do you need disability payments?
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Re: Worried sick about PIP/DLA hearing

Postby whoami » Tue Nov 11, 2014 4:45 pm

Coco......I am sorry you are being stressed with all of this. It does not help with the fibro symptoms.

I do not know about the procedures and requirements for benefits back home , as you know I am in Canada. I can only offer a couple of comments. I went through 10 years with no income getting benefits but I finally received them with full back pay. I was offered this advice from an agency that dealt with claims.

.......submit only medical information that is relevant to your case. Too much that has no bearings tend to make the person reading lose interest and then skip and move on.

....... Try not to concentrate only on the " I can't". I was told that decision makers get tired guickly of hearing the I can't. Instead of the I can, however I have a lot of trouble doing so. Try wording things differently. Example.. Instead of saying, I can't go to work. Maybe say..On the days I work, the degree of symptoms that I get make it very hard to do my job and then the rest of the day I suffer. If you said...I can't work, then they would question you because you do work, little as it is, you do.

....... I don't think having no thyroid would be considered a medical issue. As you know I have no thyroid (cancer) .
I think they would look at it this way....your levels are fine enough that you can get out of bed and get to work. As you likely know, when your levels get low the ability to function, even get out of bed and walk would be impossible and your organs start to shut down. If a person is working then they would possibly consider your levels to be within a functional level. Has your Dr put you off due to your thyroid and would he support the medical evidence to back up the reason?

...... I don't think Raynauds would cause enough of a medical concern to deem a person unable to work. Again, has your Dr suggested it would and would he provide medical info to prove it. I mention the thyroid and Raynauds because if they do not have enough evid nce to support your claim then they are mute to the claim.

I hope you get some answers that can help and guide you through the process in the UK.
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Re: Worried sick about PIP/DLA hearing

Postby Helhit » Tue Nov 11, 2014 4:47 pm

I'm applying for PIP and I'm on a phased return to work. I'm currently working 5 hours a day and the 5 minute walk to and from work is so much for me that I have had to buy a mobility scooter.

I come home and go to bed for up to 5 hours some days to recover. But I have to work to keep my house that I've work damned hard to keep. I am having to increase my pain medication and have had many workplace adjustments to help me stay in employment.

To receive a personal independence payment so that I can get a scooter that will get me to work during the winter months instead of having to pay for taxis is not a luxury of someone who is lucky enough to be able to work - in my case it is a necessity.

So yes I've applied and I've also applied via access to work. And I would say to anyone else - whatever condition they may have is claim whatever you are entitled to.
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: Worried sick about PIP/DLA hearing

Postby migrembe » Tue Nov 11, 2014 11:18 pm

Today was an extra good day i had 5 hours out of bed and that was only because a friend took me to see a movie, which i was sat down for, then we walked the 2 minutes to pizza hut and we were sat down and then walked 2 mins to his car which he then brought me home i took off my jeans and sweater and went back to bed.

i had to retire from my staff nurse job because i was too physically exhausted and in too much pain to function and the fibrofog was so bad i would forget what i was doing and what i was talking about.

On an extra bad day i can managed to get across the landing to the bathroom and back to my bedroom and back to bed.

On an average day i may spend 2 hours out of bed - spend a five minutes doing dishes and then have to rest, 5 minutes putting the washer on or unloading it. My daughter has to come over and clean and cook.

If i could work 5 hours a day i would count myself lucky. As for my house which is mine and the banks if they take it there is absolutely nothing i can do to stop them.

I have a couple of friends who work part time, one just 5 hours a day and although they have tried to get DLA they have been refused on the grounds that they can work.
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Re: Worried sick about PIP/DLA hearing

Postby Helhit » Wed Nov 12, 2014 12:08 am

I finished at 2.30 today and went straight to bed and didn't get up again until 8pm.

My hubby has cooked and done the washing for me. I can sometimes manage to hoover.

I have gone from being a bank manager to a cashier who due to fibro fog cannot work with cash. So now I welcome people to the bank and that's it.

I have to cancel going out as I am too tired in the evenings and it takes me all Saturday and most of Sunday to recover. I am letting friends down all the time as I can't get out.

I write this in support of others who want to and are able to go to work. But do not for a minute think we are the lucky ones.

At first I couldn't read as the words meant nothing, watch tv as it was too loud and spent a month getting out of bed to just lie on settee. So I count myself incredibly lucky to have improved so much. This includes reading children's books to help read again.

Fibro hits us all differently. And I have not mentioned my work in here before as I find it extremely hard to come to terms with where I have ended up. I wrote to say just apply for whatever is available, as PIP is for working people too. Please do not take this the wrong way as a competition as to who is the most ill or has the worst life as we all are in different situations. I want to help and support any other sufferer if I can.
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: Worried sick about PIP/DLA hearing

Postby whoami » Wed Nov 12, 2014 1:20 am

Helhit wrote:I finished at 2.30 today and went straight to bed and didn't get up again until 8pm.

My hubby has cooked and done the washing for me. I can sometimes manage to hoover.

I have gone from being a bank manager to a cashier who due to fibro fog cannot work with cash. So now I welcome people to the bank and that's it.

I have to cancel going out as I am too tired in the evenings and it takes me all Saturday and most of Sunday to recover. I am letting friends down all the time as I can't get out.

I write this in support of others who want to and are able to go to work. But do not for a minute think we are the lucky ones.

At first I couldn't read as the words meant nothing, watch tv as it was too loud and spent a month getting out of bed to just lie on settee. So I count myself incredibly lucky to have improved so much. This includes reading children's books to help read again.

Fibro hits us all differently. And I have not mentioned my work in here before as I find it extremely hard to come to terms with where I have ended up. I wrote to say just apply for whatever is available, as PIP is for working people too. Please do not take this the wrong way as a competition as to who is the most ill or has the worst life as we all are in different situations. I want to help and support any other sufferer if I can.



The last paragraph of your post speaks very loudly. I have always said that we all have fibro, nobody has it any worse or less than others. It would be an insult to all fibro patients if I said I had the worse case or my Dr said so. As you said we are all different, we are not affected in the same way. Our personal lives are different and therefore that part of our illness is not the same. You are right, we all need to support each other, offering whatever knowledge we have even though the same outcome may not be reached by all. I have 2 Dr's that have fibro. They say however they have had to change their ways and ability to practice due to their condition. Just because they are able to help treat me in some way does not mean that they do not suffer.

Thanks for your post.
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Re: Worried sick about PIP/DLA hearing

Postby migrembe » Wed Nov 12, 2014 10:40 am

I was a staff nurse and i loved my job and i worked for 7 years with increasing symptoms of fibro and in the end i fell down the stairs at home and that was it, the fibro had to retire.

I not saying those who work shouldn't get PIP/DLA i am saying that if you are turned down for it on the grounds that you can work then accept the outcome and be grateful that you can go to work - for now.

Living off benefits suck!!!
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Re: Worried sick about PIP/DLA hearing

Postby zappa20 » Thu Nov 13, 2014 3:05 am

Coco bella,

From reading your initial post, I think you might be approaching PIP from the wrong angle. It isn't given to people because of their conditions, but because of either their personal care needs, or mobility needs. And then only if these needs match the legal descriptors. So accumulating a huge file of medical evidence proving your medical conditions won't really help, unless they confirm your care or mobility needs. Eg they confirm you need assistance with showering etc etc.

Most medical notes don't contain this information as GPs tend not to be much aware of a patients day to life or limitations. And if they are because the patient has told them, will normally write something like ' patient states they can't walk more than 30 yards due to fatigue etc'. Which isn't quite the same thing as they're only repeating what you've said.

Neither is the fact of you working relevant. PIP and DLA are both paid to people who are in work. Unless in performing your work it contradicts any of the information you've put down on the form or stated at the assessment. An obvious example would be someone saying they can only walk 50 yards and working as a postman. So you need to consider if the work you do is contradictory to your claim or relevant to your case or not first. Next look for the descriptors you feel you've missed out on point wise or have scored less points , than you feel your needs fit, and start to build your case from that, possibly using examples from your day to day life. To meet PIP descriptors they only have to be relevant to you , for more than 50% of the time to be awarded.

To be only short of 2 points and yet your legal aid solicitor saying it will be very difficult for you to gain these points at a Tribunal doesn't inspire a lot of confidence .Is he/she familiar with this type of legal work. If they are and are stating this, I would assume that the info you've provided means you don't fit the PIP descriptors in their opinion. I'm not meaning to be unkind, but sometimes people misinterpret these descriptors , thinking they mean something else altogether which fits them , when it unfortunately doesn't.

If your solicitor isn't well versed in dealing with these cases, then would advise you to get someone who is. Not every solicitor who deals with legal aid cases is very familiar with these type of claims, which can be quite tricky. They need to fully understand the legal application of the PIP descriptors.

I appreciate the frustration of your GPs delay in writing your letter, but despite public opinion on the subject, it isn't part of his NHS contract to provide these letters of support, so if they're 2 doctors down, from his point of view , your letter isn't a top priority. I' know my Vascular consultant wouldn't get involved in writing any letter for a patient , not even if paid a high fee, as he doesn't feel it is his remit. As I overheard him telling the duty nurse to tell someone who'd asked for a letter.

If you are unable to work due to your symptoms, or can only work very few hours, with earnings less than a certain amount and sickness pay isn't payable due to previous time off, you should consider applying for ESA, which is the benfit paid to those unfit to work. Also if your earnings are on the low side and your rent is high you may be eligible for help with housing costs if you live alone.

Good Luck
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Re: Worried sick about PIP/DLA hearing

Postby dazzleship » Thu Nov 13, 2014 1:29 pm

whoami wrote:I have always said that we all have fibro, nobody has it any worse or less than others. It would be an insult to all fibro patients if I said I had the worse case or my Dr said so. As you said we are all different, we are not affected in the same way. Our personal lives are different and therefore that part of our illness is not the same. You are right, we all need to support each other, offering whatever knowledge we have even though the same outcome may not be reached by all.

well said :-)

I haven't commented on this thread before now because I don't know much about the ins and outs of claiming benefits.

what I will say, is that yes, some of us are lucky enough to still be able to work (either full time or part time) but that doesn't mean we don't struggle. it also depends upon the nature of the work - for example, a builder who got fibro would find it difficult to continue their job, but someone who works in an office would find it easier as is is physically less demanding.

I am fortunate that my 'line of work' is computing and therefore I have a sit-down job. had I been in a much more physical/active profession I doubt very much that I would still be working full time.

and I'm sure the same goes for a lot of you, and will be at least part of the reason why you are either no longer able to work or still able to work.


tldr; if there were two people, one a builder and one a secretary, and they both got fibro, the builder may find they can no longer work but the secretary still can. that doesn't mean the builder has 'worse' fibro than the secretary.

:mrgreen:


good luck Cocobella, I hope things work out for you eventually. :hugs:
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