UK Benefit System: Hello Peeps, any one... - British Liver Trust

British Liver Trust

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UK Benefit System

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Hello Peeps, any one find the UK benefit system extremely degrading?

I have just gone through two big assessments, as I have Lymphedema and severe Osteoporosis, on top of tiredness and not being able to concentrate for long, having to re read things as they just wont stick, I have no outwardly visible disabilities except extreme swelling of my limbs, nothing works as it should, even holding a phone to my ear ends in aches and pins and needles, and no strength? what's that all about?

The first assessment was for ESA with an exceptionally nice lady Doctor, she had taken the time to read my notes, I have a large hole in them from 2010 to 2016 when we lived in France, however I explained this and she was quite happy, this was an ESA assessment, in June 2018 went through the usual things, she saw I could hardly keep upright let alone do the things they ask, as I said she was very understanding, she gave me advice on a couple of things, Two weeks later I was told I had been excepted, and as I was not lightly to recover !!!!!!! I had been put in the total not fit for anything category, bit miffed as I can still breath and annoy people !!!! Again in May I was told I needed to be reassessed for PIP, now this I have only had once before, although the interviewer was very pleasant the people that make the decisions were quite nasty, this time as I could not walk at all due to Inflammation and Cellulitis in both legs due to the Lymphoedema I asked for a home appointment, whilst on the phone the chap I spoke to was and I mean this a right Jobsworth, put me through bloody torture, and said he would see if there could be a home visit arranged, now this was June 2018, I finally had my assessment 5 weeks ago, the woman who carried it out again was extremely understanding, but after all the pressure I broke down, now for a 57 year old chap to do this I was quite ashamed, when I finally calmed down I explained how long I have had to wait, she was horrified. all questions asked, she didn't ask me to do yoga or anything else as she could see I was genuine, I still await the decision, is it no wonder people think about taking their own lives over this Benefit system?

On Monday my ESA payment missed the Bank, I phoned in and it took over 45 mins for them to answer, I was on hold, then a further 55 mins to sort out which I thought was so stupid, I have moved house, I had sent in a letter with proof of my address for them to change it, because I did this and not followed their routine which is unknown to man or beast they decided to stop my money, to make me contact them, which meant a couple of Direct Debts were stopped and the Bank has given me a black mark, surely if they wanted to make things Oh so easy they could of sent a letter to both addresses? asking me to Phone? The reason the chap kept me on hold whilst he changed the address on four systems???? I have not a clue, perhaps some one could explain this? he made an awful fuss about making the payment to me, in the end I felt guilty for even phoning, it seems that Project Fear and lets make everyone afraid of the system is alive and kicking!!!!!

Am I right to feel as if I am banging my head against a very large solid Brick Wall that is not interested one jot?

26 Replies
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Sadly due to so much benefit fraud , it has become extremely difficult for genuine cases such as yours to apply for and receive. I am sure you will get what you are entitled to eventually, and be back dated (nice lump sum)

Very very frustrating but keep fighting, my mum went to court in a wheelchair in the end and won.

Good luck x

I feel its the goverment who are to blame they were employing people specifically to get a person off benefits who were already on them.There were people with actual obvious illness's and limbs missing who had been on the DLA benefit and when they changed it to PIP thats when they started taking people of the Benefits . Some of the people who were paid to ascess clients were boasting of how much money they were making if they got through the applications as quickly as possible. thats why they are now starting to record the interviews and even film them as far a i know. Have a read of this benefitsandwork.co.uk/news/... i hope it comes out so that you can just click on it.

Ignore if u don't want to hear this. Or blast me with a negative reply. But I really don't want to turn this into a political convo. Britain, national health care. US, Obamaçare (which u still have to pay for at a "controlled" rate...and covers pre-exisintg conditions) as well as disability which pays 600-1500 a month from my talks with ppl. And u get medicaid which helps greatly with medical costs covered (90% I believe) if u can prove u can no longer work. I posted a question about accepting "at risk" livers for transplant and there were helpful answers, but also discussion about how everyone in Britain is covered w/healthcare and how that that was so much better than US system. Started complaining how could I be so callous? "U get the liver u get the docs know best. I don't understand why u're even asking this question" (although tho I find it hard to believe that it's any harder than a transplant in US...we'll see when all the young heavy drinkers that seem to populate England works out in 20 years). Devolved into rants about Trump which I wasn't looking for...I guess a Yank knows how to stir up sh**. Was told I didn't understand the British organ transplant system. So I STFU (stiff upper lip as u guys say).

I DO NOT WANT THIS TO TURN INTO A POLITCAL/US vs UK ARGUMENT. Me mum was born in Folkestone. Met my dad during WW2. Told me stories about running to air raid shelters/blackout curtains/her Mum raising 7 kids w/o father who left to join merchant marines...never met him myself...no one no what happened to him. I love England (and Scotland...went there for a trip when dad was later stationed at Mildenhall). I am not 4 social medicine...at least not the way we're solving it here. u're either in or u're out unless ur on disability. But even that sometimes u have to fight for benefits u deserve. Luckily I have insurance thru work and have kept very good insurance. But if not then it sounds like I would be headed down the same road as you.

Not sure why I wrote all that. But the the thing is push thru this obstacle. As much as it takes. Then it seems that doctors get better based on what I've read on this boards. Appreciate the hand u'r dealt and do what u have to. The application process in US for disability (much fraud as I saw in another response I saw to ur post is much the same as ur's. But we have very few home visits..good that u have those.

Regardless of the system u'r dealt appreciate the hand u've been dealt. Many parts of the UK system of health coverage I'm envious of. Stay strong and complain until u get what u need! And good luck with u'r medical issues.

in not really sure what your point is, maybe you dont have one and are saying things. as you can see imnomensaeither. i cant even spell. i picked up on one or two things like appreciate the hand you'v been dealt. i dont know about appreciate it but i try to make the best of it. its no good saying others are worse of as what does the person who is the worst of compare himself/herself too? although these "worse off people are an inspiration to me they way they get through suffering and help thier wifes/husbands/families through it all. there may be people who we dont gel with but we love them all because the suffering we share brings us together. I believe that goods and purchases are much cheaper in America that britain. Im still glad i live in this country though at the end of the day. have a good day. love grace xoxo

Awww grace. No offense intended. Simply put I was trying to say that we, to, suffer from the same frustrations and to give encouragement...sometimes we all just have to push on...we're ALL in this together. Sorry u had trouble understanding my post. But I knew the minute I started reading your reply that this was going to be a knee jerk "bad" response (Clue? Making fun of my forum handle which u can't even spell. It's short for "I ain't no Mensa, but"...both a play on the stereotypes of ppl who live in SE US where I live, but, more so, means "I'm not a member of Mensa, but..) so I don't claim to be smart but here is my opinion for what it's worth). Huh, never had to explain my handle here or in other help groups. Aren't we all here too old for first grade level of "making fun of a name" shenanigans? Bad form I say. Anyway, this man is suffering. And my questions and answers seem to stir up trouble/take attention away from the issue at hand which is not my intention at all. I've gotten good info from reading others posts...every one helping everyone. But I think best I keep my mouth shut from here out and just stick to reading. Thank u 4 pointing that out to me. I wish u well and God bless u'r ultimate outcome is/was successful. And Merry Christmas!!!

I was joking along with you i think you'v taken it the wrong way. please dont keep your mouth shut. I wasnt offended in the least. i thought you were making a joke yourself when you said you ain no member of mensa thats why i said i wasnt either and i cant even spell, that was me making a joke. if i was annoyed i wouldnt be saying have a good day. I'm not sarcastic. i feel that would be sarcastic epecially if i was annoyed. i even put kisses at the end. i wouldnt be doing that either if i was annoyed. xoxo

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Hidden in reply to grace111

People, here we have a classic meeting of two different cultures within the same language, American and English, ENGLISH are two different languages, hence why politicians have such a difficult time negotiating, especially when both sides have their heads firmly up their collective arses. To the person in the street it causes confusion, which an open mind will overcome, as you have done, but to a Politician.......................................who knows??

grace111
grace111 in reply to Hidden

I was over friendly and it doesnt help when people are in pain. i should make sure i know the person well before i joke. I will be more careful in future. im on a high for now with my mood as things are going great. im not over the top or mental but its a long time since things have been good for me. i must not forget its not the same for others.

Hidden
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The system is not pleasant but at least you got through the medical assessments with sympathetic people, the admin system is another matter and seems to take no awareness of impaired cognitive function. My ESA claim was back dated to one week after my transplant, the not fit for work note 📝 was dated. They gave me a rational sounding reason, which went right over my head.

The incapacity system was a political smoke mirror exercise introduced by Mrs Thatcher’s government. Having got elected on the back of the Labour isn’t working campaign, one million out of work. Within two years this had gone up to three million. Massage the figures and invent incapacity benefits. Falklands war and the rest is History.

grace111
grace111 in reply to Hidden

i never got through the medical assessment with sympathetic people they are the liars,the ones who medically assesed me and people i know.. they also make the decisions on wether you get paid or not. I still have my medical assesment by a physiotherapist none the less who knows absolutely nothing. her posture was terrible infact.

Hidden
Hidden in reply to grace111

Grace,

Bad news and I am sorry to hear that. I made the point to Jumbot about having been lucky to have had a sympathetic ear. I have plenty of experience having been to three, as my wife’s carer. One of them fell asleep during the assessment. My wife was appalled but I calmed her down and said this could be good, let’s wait for the assessment decision, all positive. Funnily enough, I was putting the rubbish out the other day and a young lady pulled up in a smart car, asking for directions to the assessment centre. Hair nicely done and make up fully applied, umm.

grace111
grace111 in reply to Hidden

cant believe one of them actaully fell asleep. unreal.

grace111
grace111 in reply to Hidden

that lady in the smart car was probably helping someone there or meeting someone as people who go to those appeals dont usually go themselfs and certainly not all made up in smart cars. By the time appellants get to the appeals they'r usually run down with all the worry and stress that they'v been put through. dark eyed through lack of sleep too. did you see that thing about 1000s of carers being made to pay back thousands of pounds because they were getting a bit to much and didnt notify the systems. some were only getting £1 over and shouldnt have got carers allowance. its a disgrace its in that link i put on the other day.

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Hidden in reply to grace111

Grace, your probably correct, I did think about it after she drove off. Possible Doctor, nah too young and would have been better prepared.

Caspiana
Caspiana in reply to Hidden

Hi Hidden .

Sorry to be rude and chime in, but I have a lung condition and unless you see me wheezing away or catch a glimpse of my oxygen tank, I look totally fit and healthy. I always have my hair up and usually have make-up on. My point being that not all disabilities are visible. Have a lovely weekend! xx ☕🍰

Hidden
Hidden in reply to Caspiana

Caspiana,

Thanks you for that and I completely agree, prejudices are shocking. I have a blue badge and if you looked at me, especially post transplant, there is no visible problem. I see people looking at me when I pull up in a disabled bay.

My wife is bi-polar and takes pride in her appearance. Having to get her to ‘dress down’ for medical assessments are a struggle. If only ‘never judge a book by it’s cover’ was true. Enjoy your ‘rather wet’ weekend as well.

Mark 🌸

Caspiana
Caspiana in reply to Hidden

I got that very same "look" awhile ago when pulling into the disabled space at the market. The woman made a point of looking meaningfully at the ♿ sign and then a cold glare at me!!! Till she saw the O2 cannula. 😐 It's sunny here 🌞 in Japan, but I hope you have a lovely weekend too. ⛄

Hidden
Hidden in reply to Caspiana

It brings a smile to my face😬, the number of times I would pull up open the door and then be unable to swing my legs out due to the severe oedema, now mercifully resolved and Frankenstein shoes 👞 binned. Strange but mostly elderly ladies where then the ones who offered assistance. Glad it’s sunny in Japan. ☀️

very much so mate they are meant to help us and all they try and do is not pay out any money normally with out any good reason

keep plugging away mate took ages but my wife now does get a PIP payment

keep strong

Hidden
Hidden

Well it seems I have been victim of project confusion or fear, well it had me worried, re my original post, I received a communication as expected to sign and return, it was form ESA3 around 50 odd pages long, very intimidating, it looked as if I was about to reapply and start the begging process over again, as I have been recently accessed and pronounced fit for nowt, another phone call to the ESA Team, after being on hold for ever I was cut off, my anxiety level went through the roof, sheer panic, I tried again, now actually with Lymphedema holding an arm full of a couple of ltrs of fluid with a phone to your ear is nigh on impossible, hands free phone on order!! phoned again and after almost the same wait to the second I got through, explained what had happened and I must of got hold of an honest person, he said all you wanted to do was change address, I replied yes, he went off and on his return he said, he could see no reason why my money had been stopped, as they will except change of address in writing if accompanied by a utility bill or by phone, he confirmed my payments had been reinstated, and as for the form he said he would put a note on the system that he had told me to throw it away, it should never of been sent, he also gave me his section and number in case some other numpty had not finished with me!! apparently its a fishing form to find out if all the info you had given them back to 2012 has been correct. If you will excuse me I have been shitting bricks due to someone playing weird games!!! Don't they realise most applicants are genuine?

Hidden
Hidden in reply to Hidden

They are an Orwellian nightmare to the ‘uninitiated’. I know several people who are, shall we say ‘well practised in navigating’ the system. Incidentally and by no means a criticism, did you keep up your contributions whilst you were in France? 🇳🇱

Yes they are a joke husband was declared fit to work twice even though suffering badly with HE & being on transplant list all because he could pick up an empty cardboard bo, can't work as a chef when like that die to health and safety they didn't care. He gets what they call virtual money which is just his NI nothing else

Hi jumbot,

Sorry to hear you are having issues, I hope they are resolved soon.

Mary

I know exactly how you feel. I have been on esa for 8 years due to fibromyalgia and OA. I had to attend a medical with a woman who was quite unpleasant. She had moved the chair a distance away from the desk and just casually said oh move the chair closer. I didn't...I was wise to her antics! I explained that on rare occasions my husband would drive me to the top of the road...quite a long walk and i could sometimes walk round our tiny Tesco express. I got my letter saying I had scored no points so I had to go to tribunal. It was in a court in Chester which was about an hours drive away. I won my tribunal because I explained that she (the assessor) had written that I could walk to Tesco and do my shopping. These people lie!!

A friend of a friend who was a nurse started working for ATOS but had to leave after 2 weeks as she couldn't cope with having to lie about the patients..it's shameful that we're treated like criminals. I loved my job and certainly made a lot more money than we're grudgingly given. There will always be people who abuse the system but I suspect that there are far more who have to have benefits. I applied once for pip and the young physiotherapist who assessed me made me feel so unworthy that I can't face applying again. The form filling makes me feel anxious and exhausted.

Take care all. Deb

I am really sad to read your post Hidden . I don't live in the U.K. but I have many friends and family that do. I am sorry it's so hard.

Sending warm wishes,

Cas xx🍎🐛

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Wow,after I was transplanted I took advice from the support worker at the Hospital. She talked me through the process. Made the initial phone call, uploaded the sick note and the basic payment of ESA arrived. The same support worker helped me fill the pink form. After a five week wait without having to go to the assessment centre, the one I went passed the other day with an ambulance and police car outside, lights flashing. I am now in the support group with the extra payment. Anyone starting this journey my tip, take advice. Preferably from the hospital, if they have one.

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