I have just recently been diagnosed with emphysema at the age of 43, after 5 years of being diagnosed with copd, i had my atos medical examination before being fully diagnosed with emphysema and the medical review scored me 0 of 15 points saying "His lungs were clear and he was not short of breath during the assessment. Therefore the healthcare professional felt that significant functional restriction is unlikely". Can this really be correct?.. The spirometry the doctor used was a small plastic tube, not like the digital spirometry my doctors have been using to test my lung function for years now. My troubles breathing are at the stage where if i do any Physical activity, even getting dressed, i get breathless and wheeze, getting shopping home and carrying it up the single flight of stairs to my flat has me gasping for air, wheezing, dizzy and feeling like i will pass out. I don't drive and have to use public transport, taxi's or i can walk on the flat for about 10 minutes as long as i am not carrying any extra weight, shopping etc and walk at a slow and steady pace but as soon as i hit a slight hill i begin to have great difficulty breathing. All my benefits have now been stopped, I will be filling out an appeal as all the work i have ever done has been physical. I have no formal qualifications and really am at a loss as to what type of work i could do. My main concern is why don't they take into account all my medical history? This is the first medical review i have been to and had no idea what i should take with me and thought that if they needed further information they would ask for it and i could get my doctors to supply them with said info. (Moral.... Take as much medical history information with you as you can)
The thought of a long drawn out appeal and struggling on a low benefit is worrying me sick, as is trying to find work ... my emphysema will keep getting worse all the time and i don't even know how to prepare for the future, how to stay well, how cold and wet weather can affect my condition. I really do not know who to turn to for advice and help...
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DaveZ
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It really sounds like you need some real advice about this, I know Gordon will be able to help you with some of this.
There are only a couple of things I can say, firstly, I wanted to make sure you know emphysema is COPD, COPD is the 'umbrella' term used for obstructive lung disease including emphysema and chronic bronchitis.
The only other thing I can really say is that if you have been diagnosed with COPD and you clearly have symptoms, no matter what the official stage your COPD is, the functional effect it has on each individual is going to be different.
So from a personal perspective, I don't understand how anyone can say what the ATOS Dr said (but I am not a professional).
I do know BLF helpline will be able to help you with the benefit side of it too and I hear they are very very good with these things
There is nothing more upsetting when this sort of thing happens, it makes you question yourself and the anxiety of the financial implications makes everything hard to deal with
I wish you every bit of luck in getting this sorted out quickly
> ...my emphysema will keep getting worse all the time...
Well, having that sort of outlook on your life isn't going to help. Sorry to start off like that but a bit of a sharp shock is what you need to get you to realise that we're going to try and help you if we can and you need to be more positive of the outcome
It is worrying when they withdraw benefits and suggest you go get a job. Of course, I don't know you or how bad your condition is either. COPD can be at many stages, it is possible you're still early stage and the doctor who assessed you is right that there isn't much restriction. That's not to say the diagnosis of emphysema was incorrect, but has an effect on what you may be able to apply for. As long as you're considered fit for work they'll keep knocking you back, more on that later.
You can go for years and years at the early stages and not get any worse, not even slowly. Once you know there's something wrong you take steps to stop it getting worse. Medication will help if it's needed, I've no idea of your test results or what your own GP has said so can't really help in working out where you are in the grand scale of things, but don't stop doing the shopping - you'll be with us for some time yet.
Health issues: Emphysema is included in the umbrella term COPD, as has been mentioned. They are one and the same as far as doctors and benefits go. Stick to one or the other and save yourself some confusion. You need to be gathering your evidence, doctors and consultants reports especially. If you don't have them, ask. Most consultants will happily send copies of letters they send to your GP but you need to ask for them in the first place. Many appointment letters mention this.
Next, get help - there are many organisations who can assist in your appeal. The BLF helpline can advise, but they'll not be able to fill in forms or write appeal letters. I gave links and info about many organisations in this topic :- blf.healthunlocked.com/blog... - have a read of what I put there, the 6th reply after the question. That's to save me re-typing or cut/pasting it all here as the same information applies really. I know that was for DLA and you're looking at ESA but it's the same department and still ATOS involved.
It sounds like you need to be referred to a consultant, if you have not already seen one, who can do the full tests, using a bigger machine at the hospital for the spirometry. It can be a long process to get them to say for certain, if they ever do, what stage they feel you are at. Be warned that you will not qualify for benefits if you are able to walk for 10 minutes on the flat, that will be way beyond the accepted limits. And, those limits are to be reduced for the new PIP system.
You can ask for copies of the reports they have taken into consideration, that would be anything from your GP and the ATOS assessor, you can't really appeal against a decision if you don't know what's been said.
You need to find more information on what it is you are applying for, and check to see what the criteria is. Start at gov.uk/browse/benefits and work your way through. I guess you've already done the ESA ‘Limited capability for work’ questionnaire and been assessed and that's where you are now. In which case read this leaflet - goo.gl/H3JS1 - you only get one month in which to appeal, so do that but PLEASE get advice before going into detail. The appeal letter needs to be quite simple, you want to appeal the decision taken and will be forwarding a fuller letter with your reasons shortly.
The harsh reality is that many people like yourself will not qualify for benefits, the limits are so tight that you will not be assessed as qualifying. Being diagnosed with COPD isn't a magic key that opens to door to benefits, as many here have already found out.
Call the BLF helpline on Monday and have a chat with them for some much needed reassurance. Then contact an organisation like the CAB or Welfare Rights and see if they can help you with your appeal, much easier on a one-to-one basis than any of us trying to do it via these forums.
I'll not try and tell you it's easy and it will soon be sorted, the system does not work that way. You need to shake yourself, look to the future and be determined to do something for yourself. Don't discount getting a job, there are specialist disability advisors at the JobCentre who can usually give you some pointers if you can no longer manage physical work.
TY Gordon .. lots of usefull info there which i shall spend the rest of the weekend looking through .. i was referred to the chest clinic where they did a full spirometry and the letter from them is at my doctors, they also have a ct scan showing the holes in my lungs and confirmed it was emphysema .. my copd was diagnosed as moderate/severe a year and a half ago and since then my spirometry at the docs has shown it getting worse .. i have no idea how much worse as they have never told me any of the figures .. Going back to work i think would do me a vast amount of good, i just have no clue what i would do .. the disability advisers i will certainly speak to.
Paperwork, evidence, proof, call it what you will - if you've been diagnosed as severe then you need something in writing from your GP or consultant that say's so, which needs to be part of your appeal. Anything that backs up your claims is vital.
Then get help to do the appeal and paperwork, it's amazing how many people are successful when they get the CAB or similar involved. Time is very important too, make sure whoever you speak to is aware how long you have to get an appeal in.
First off if you are appealing be sure to ask that you are paid the basic rate until the appeal is heard. Next you should head off to your local CAB. I have every sympathy for you, Having just had my appeal rejected, but gaining 6 points that ATOS & DWP were reluctant to give. It seems that the Tribunal Judge's and Doctors have a new directive which is not to take into account any pain either physical or mental. If your Doctor thinks that you are unfit to do any work at all then you should try using section 29 . Basically a section 29 is where your doctor signs a letter to say that if you are found fit for work it will harm you. Or section 35. A section 35 is where somebody else will be harmed if you are found fit for work. Only you & your Doctor will know if either of these are applicable to your condition. I have heard that if you present evidence supporting the case for either section 29 or 35 then the likelihood of the "DWP" taking the claim to tribunal is pretty much zero due to the fact that if either section 29 or 35 became a reality then the potential of being sued would outweigh any savings made.
Remember don't lay down and die you have a right to life.
Thnx Preshous .. Yes i had heard you need to ask for the esa basic rate if you appeal .. not sure on the process of asking though .. regulation 29 and 35 are very interesting indeed..
Hello Dave, ask your GP, consultant, respiratory nurse to give you copies of any tests, Consultant letters to GP, etc. My respiratory nurse was wonderful and wrote an "update" letter to my GP specifically for it to be copied for me to give to ATOS. It is disgraceful that people who are too ill to work have to fight like this, but we do. Good luck.
If you can get the membership fee together Dave, it's worth it for the help and advice,Having to 'prove' you have an incurable progressive disease is a downer because it makes you focus on what you can't do and not what you 'can' do.Whatever happens keep focused on staying positive in your day-to-day,All the best to you,Huff x
i am starting to feel like i need to be a solicitor rather than just a normal everyday joe with a health issue.. it is all very daunting .. overwhelming .. i guess that is their intention .. thanks for all the responses .. great source of information .. now i just have to see if my brain can absorb it all lol..
Get help! Ring the BLF on Monday (03000 030 555). People who have the help are much more likely to be able to present things as they are. Good luck.
If you are appealing the ESA claim you can apply for income support but it will only be at the level of Job Seekers Allowance ie 71.70 per week. Not much but a lot better than nothing. If you live with a partner you probably won't get it if they are working.
I agree with the others - appeal and keep appealing and get all the evidence you can. It can be a real fight to get your rights. Its not how it should be but unfortunately its how it is.
Yes i certainly am going to appeal, if only to get the points i feel i should have been awarded as a 0 score is crazy.
Then i am going to sign onto jsa and not ask for esa, i am sure the appeal will fail and don't want to fall behind with my national insurance stamp.
As i can walk for 10 mins, albeit at a slow pace before discomfort on a flat surface at the moment i am pretty sure Gorden is right and it will be a fail anyways.
I just want them to acknowledge now the effect my health condition has on what i can physically do and it does affect my day to day activities greatly.
So Tuesday is the earliest i can speak to my doctor and ask for all the relevant information and on Monday i will head straight to the cab and then make phone calls.
Thnx to all of you for the information provided.. i feel better equipped to deal with this now.
It does amaze me that these people to whom you have to virtually beg to for financial support, don't differentiate between the flat, and hills or inclines.
Like most people with emphysema, I, too, struggle with hills and inclines, but can manage reasonably well on the flat. That would be fine if I lived on the Fens or around Lincoln, but I live on the South Downs. I live on top of a hill, and struggle to work outdoors on another hill.
I feel as if I'm about to have a heart attack if I try and walk up a hill. Or maybe that is what these people want to happen?
yeah their whole system seems odd... seems that if i can lift my arms above my head i am fit for work .. but i can say that f you added just a small amount of weight to those arms as i lifted them you would see how breathless i would quickly become .. i am sure atos are not fit for purpose but also i was not prepared for the atos (so called) medical .. i was only diagnosed fully at the beginning of the year and my medical was december last year so now i have a lot more medical proof to take next time.. I appealed and was added to the work related group.. Went for the interview at the job centre for work related activity and the guy there was very nice... added some notes to my file and sent me home..
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I certainly will call the BLF helpline first thing monday.
New and terrified
28 yrs old and has emphysema.
Medical Records
Back to work with emphysema 
Annual COPD review
