British Lung Foundation
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Help please, my sisters ESA benefit has been stopped

Hi, I don’t know if anyone can offer advice but my 38 year old sister has very severe Empysema, she was diagnosed about 10 years ago. She recently went for an Employment support allowance assessment and the health care assessor asked my sister to blow into a peak flow meter and didn’t believe my sister was cooperating as both her blows recorded such low values. It would appear she didn’t believe my sister and decided there was nothing wrong with her so awarded her no points and her benefit has been stopped. She’s been told she needs to look for a full time job.

My sisters Fev1 is 28% and she can do very little without struggling to breathe, she’s also depressed and there’s no way she could work full time. We’ve requested a reconsideration and sent copies of her medical records. Do you know of anything else we can do or any other benefit/help she can claim? We’ve never looked in to this as she doesn’t like to look greedy etc but she’s struggling more and more and can’t go through the stress of losing her benefit and having to get a job. It also seems mad to have to get a bus to miles away for an assessment when she barely leaves the house.

Any advice would be greatly appreciated.

10 Replies
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Dear Laurie - what a horrible situation for your sister. On Tuesday, the British Lung Foundation helpline will be available in office hours - 03000 030 555. They do have people who can advise on benefits and should be able to help your sister.

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I think it's a question of all getting behind her and getting all the medical evidence you can, i.e. Doctor letter, and I assume she's under the care of a specialist. Having severe emphysema isn't something you can make up and they should know that. She'll need some support and help with this, but I'm sure it'll b sorted and contact your local citizens advice would be useful.

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Hi the first thing to do is appeal. She needs also to apply for PIP which is short for Personal Independent Payment. This is a separate benefit to ESA and it based not on what illness she has but how it affects her.

For more details have a look at the Gov.uk site. x

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What they are doing to sick people is absolutely disgusting !!!

Your sister could do with some help from Citizens advice, because it will make it so much less stressful for her. In the meantime, get her Doctor to do her a strong letter and a print out of her FEV1 and get it in with the mandatory reconsideration as soon as possible.

In the mean time, she can ask for a hardship payment. I didn't know this and had to sign on jobseekers to get £73 a week.

Someone will probably ring her to tell you the result of the Mandatory reconsideration. Have your appeal form ready to go, If it's a no, write a short letter, outlining why she wants to appeal and send it off straight away. As soon as they reply, she can phone ESA and tell them she wants paying the ESA assessment rate. It's the same amount as JSA but she doesn't have to jump through their stupid hoops. My JSA adviser actually gave me a form to take to my doctor's to fill in stating some kind of section 35, so, they're not all bad.

Once the appeal is in, she can take her time picking through the lying medical assessment details. That's when she can send any further evidence in and prove the descriptors she qualifies for. Which, with a low Fev1 such as her's, must be most of them.

Tell her not to get herself too upset about them not acknowledging her illness, they are being PAID to do it. I was assessed by a doctor so,I thought he would be fair but no, I had apparently been examined on the bed and had jumped up on it with ease. There wasn't even a bed in there and my son was in there too. I told the judges that and the DWP woman sat squirming in her chair. I honestly, don't know how they can sleep at night. xx

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That is disgusting take it straight to appeal and get advice from CAB .Also see what other benefits can be claimed in relation to ESA good luck xx

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Hi Laurie170, so sorry to read this about your sister, that's really bad and I can't see why on earth they stopped her money. If I were you I would definitely appeal against decision. Good wishes to her and please let us know how she gets on? ✋️😊

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Thank you for your help. I’ll phone the helpline next week and see if she’ll come to citizens advice. Unfortunately, because she’s had to cope for the last 10 years (already severe when she was diagnosed), she’s adapted well and because she’s so young, she can possibly do more with that lung function score than others may be able to? She hides it well and stops when she can’t breathe and regains control and leans on the kitchen worktops while she’s cooking etc. She’s slept propped up for many years as she can’t lie down and falls asleep regularly throughout the day, gets herself dressed but very slowly and it’s exhausting but I’m worried that these things don’t even get asked.

She’s written a letter giving the Doctors and DWP authority for me to act on her behalf. My sister doesn’t want the assessor to think she doesn’t try to do things so doesn’t always answer the questions in her best interest. I ask her to tell me when she has an assessment, so I can take her and help but she doesn’t as she doesn’t want to put me out. I can’t push myself on her too much as I did that a long time ago, when she went through a stage of not going to consultant appointments, and it affected our relationship for some time.

Thank you again and for listening.

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I really hope your sister has some luck. I feel so sorry for the both of you. I would also recommend Citizens Advice Bureau. Unrelated to lung problems but feel I should share this but my husband has chrones disease. When he used to be assessed he was asked twice to explain what was wrong with him as the assessor's didn't know what chrones was and what was the sypmtoms of it. One guy that assessed him was a fitness instructor and had no medical knowledge at all.

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Hi

May I suggest you have a look at a site called benefits and work

benefitsandwork.co.uk/news/...

It offers lots of general advice and help with how to fill in forms for maximum points and has an interesting insight into why so many benefits are stopped after an assessment.

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Hi, I like your sister had my ESA stopped in September of last year. I did not have my diagnosis of COPD at this point. It was for various other ailments. I asked for the mandatory consideration. That failed too. I appealled. It took until November this year to go to appeal. ESA awarded me 0 PTS. After a 3hr tribunal, which I represented myself, there was only going to be one winner. There was a judge, doctor, man from DWP, my husband and myself in that room. I was questioned about my COPD, which had been diagnosed in February of this year. I replied that I thought that it was not to get taken into account. They also questioned me about the 181 page health account my Dr had sent them. I got upset and tearful when they questioned me about my incontinence. To the extent the judge called a recess. I'm not telling you all this to make you wary or afraid to take the DWP on at their game. I won my case. In the appeal document I had received, the judge gave to of the questions as examples for the DWP. One on my mobility the other on my incontinence. I had scored 9 and 15 points for these questions alone. You only need 12 PTS I think to qualify for ESA. It was worth all I endured to put a great big grin on my face. Please, don't let your sister just except what they say. Stand up and be counted, she is worth it.

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