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British Lung Foundation
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PIP awarded until Feb 2019 Taken off me


After being awarded standard rate for daily living mid 2016 until Feb 2019 I was pleased. My husband is my constant carer as I struggle with all daily tasks. Daily living is a struggle to say the least.

Out of the blue earlier this year the DWP sent a form to fill in about changes to my disabilities and whether things had become easier or harder to deal with. I had no choice but to fill it in and explained that my condition had worsened as I have more health issues.

I was expecting my award to stay the same with a hope of receiving mobility help as I cannot get around.

When the award came 2 days ago I was shocked. They scrapped my standard living component but replaced it with the standard rate mobility only.

I have severe copd emphysema, 34% lung function.

Sinus tachycardia, resting pulse 100-140.


bone density loss

emphysema and previous pneumonia and pleurisy on ct scan

I am seeing heart and lung specialists without successful treatment as yet, and this year alone I have been on 5 courses of antibiotics and steroids for infections.

The assessor wrote that "the evidence shows YOU have no functional restrictions either physically or cognitively" and that she cannot award me pip for daily living(even though it was previously awarded).

She said she was a qualified nurse, so I expected that she knew how severe and difficult living with restricted lungs would be, as well as other complications.

I am very angry. And, as my husband has to care for me, what do I do about that?


duoresp spiromax 320. umeclidinium bromide 65. salbutomol100. lisiniprol 20mg. Bendroflumethiazide 2.5mg. artovastatin 20mg. ivabradine 5mg . carbocisteine 375mg. alendronic acid 70mg. lansoprazole 30mg. doxycycline100mg. prednisolone 5mg.

Sorry for long post.

Just asking if anyone has had theirs taken away after award was set.

19 Replies

You must appeal


You should appeal. If I were you I would contact your local citizens advice bureau and they can advise you how to proceed and maybe represent you at the appeal.

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I have contacted them and stated that I am not happy with their decision and emphasised that I cannot be cured. I explained that it was them who had forced the forms on myself to explain if my condition had become worse, and I could not understand how they could reverse the decision after having all the medical evidence. I stated that it is chronic, it is never going to get better, so I have asked them to look at the decision again. The guy seemed sympathetic on the telephone, but, I have been reading posts where people have had all their help taken from them, and have had to battle to get it replaced.

thank you for your replies, I am still angry over their decision.

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Asking them to look at their decision again is not the same as a formal appeal. You do need to contact your local citizens advice bureau for guidance.

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Age concern UK will be able to advise you, they will send someone out to see you who will help you with form filling etc, also advise on any other benefits you may be entitled to. Good luck with this.


You have made me very nervous, i have just had my forms put in the post for the same review. I had such an awful time trying to get it in the first place , i could not cope if i had to start again. Xxx

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I could not believe it. I just hope you have more success.


Hello Carol, I can imagine how very worrying this is for you. You need some expert advice to help you appeal this decision. Please call Biddy, who is our Benefits Advisor, at the BLF Helpline on Monday. I'm sure she will be able to help you. See her post here - healthunlocked.com/blf/post... which includes details of when she is available.

Good luck, :)



my local cab has shut down due to cut backs, and I have tried to ring blf benefits and no one is available until Wednesday due to holidays being taken. I will try then. Thank you.


Appeal. This is an absolute disgrace to treat you in such a manner.


Definitely appeal. It's a war of attrition - they try to cut the amount of money they pay out by giving people so many hoops to jump through they give up in the process.


Appeal and make your case as strong as possible get backup from GP consultant ,RSP team and any one else you can think of.



So sorry to read your post - no wonder you're angry! Hope you appeal and get some satisfaction then. xx Moy


its a disgrace how they are treating people I have been turned down twice and my claim is going to the small courts the citizens advice have arranged for some one to represent me and I have got back up from my GP and consultant

good luck


Thanks for the support.

I will see my respiratory nurse in 3 weeks and try to piece up the medical information again, even though they have already received it.

All I can do now is wait for their decision again before appealing.

I am not informing carers allowance yet as I believe they are wrong in their decision and I will appeal when I can.

If it was them or a member of their family I am sure they would not have cut the benefits.

I need all the luck I can get.

Thanks again.


I was awarded PIP in May from DLA indefinite to PIP for two years. I get the enhanced mobility and the lower rate for care which was what I was getting before and the only thing that has changed is the time limit.

I rang to ask why two years (do they know something that I don't, such as is there a miracle cure or will I be dead in two years time). I have an auto immune disease (lupus) which has damaged my lungs (pulmonary Fibrosis). I was told that because of my condition I could need more care and therefore it is better for me to have the PIP reviewed more often.

I use ambulatory oxygen and this in turn causes problems to be able to cook. I don't need help with my personal needs only when i'm having a flare and is in a lot of pain and fatigued.

I was left feeling shocked that they think I might deteriorate to need more help with my personal needs and if I did between now and May 2020 I bought if I would have the energy to tell my husband to ring to have the PIP reassess.

If you have a social worker or someone who knows you and your needs get them to write a report the next time for you. I can't remember but I think your husband could write a report to say the things he does for you on a daily basis.


Agree you must appeal. Heres a tip. Stress all the problems you have that your husband helps with, the effects of taking drugs in such cocktails, emotional effects of being ill and the added effect of the symptoms of more than one illness intertwining. i.e I have hand tremor plus arthritic hands plus minor visual impairment to the left one on its own causes minor disability but put together it causes more severe disability. Of course theses are not all my problems this is just intended as an example. You do have physical impairment your poor lung function and side effects of drugs you take, plus the impact of loss of normal health on your mental wellbeing. Try and get Cab to help you or BLF helpline to fill in forms ect and put your case to reveiw or appeal. Best Wishes


I know it's easy for me to say Carol, but you must appeal. I don't know how they make these decisions.


More bad news.

As I have asked for my decision to be looked at again, I received a text stating that they would look at the decision again and contact me within 6 weeks.

That was on 5th of July.

Now they have stopped my husbands carers allowance for me altogether without a letter or any communication at all.

Not good at all.


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