In April this year at 49 years old I was diagnosed with severe copd, with an fev1 at 38%. This came as a shock. I also suffer with tachycardia which shows a resting heart rate of between 110 and 146 regularly.
I seem to be invisible when speaking to my doctors as the allocated time of 7 minutes does not give me time to discuss things properly.
I did try to go on statutary sick leave as my job involves with working with children in a confined space which I believe has brought on 3 lung attacks so far this year.
As I do not earn a certain salary, I did not qualify for sick pay from my employer, so tried ESA, again to be told that as I have not paid enough NI over two years I do not qualify for that either. I have worked previously over 25 years paying full stamp, but that does not matter to them now
Four weeks is too much without a wage, so I have reluctantly had to inform my employers that I will be back at work.
My nurse practitioner had sent me to pulmonary rehab course, but I have had to end those sessions as I cannot fit work and rehab in together.
Seems that I am losing battles whichever way I turn.
Pulmonary rehab advised to stay away from people with infections, but my doc who asked when I was diagnosed with copd,(what a cheek) said I would be fine. she seemed to forget all about my diagnosis.
Sorry about the long post at my first visit, but my head is swimming with so many questions.
Carol.
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carolcorby
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benefitsandwork.co.uk/emplo... Hi this might help you. You can also apply for PIP that is not means tested I used to work for an employer who didn't pay sick pay and I received income related ESA
I did have help from CAB filling in ESA forms on the assumption I would qualify.
However they turned it down point blank. I had conversations with their manager saying I had help from Citizens advice but they still turned me down. I also said that because of their decision they were forcing me back into a job which can harm my health further. They would not budge.
My husband only works part time and also does not earn enough wage to pay national insurance contributions, so I have to go back to work. we both work with children and only have a wage in term time only.
I am just finding it hard to cope with my shock diagnosis and lack of help from my doctors.
I have had help from the CAB to fill in forms for PIP, but with no support from my GP, I feel that that will be refused also.
I have never claimed anything in my life, so am new to the benefits system, but was also in despair whilst on the phone to the ESA people and was maybe a little dramatic when I told them they were forcing me to work with this illness and would probably die on the job. (ha ha) As I said, that was a bit dramatic.
I am so sorry for your situation I also had the CAB help to fill in my forms. And why will your dr give you no support. Do you have a consultant you can get to help you. The CAB should beable to help with an appeal for ESA. And also if you get turned down for PIP. They said they would help me I I got turned down.
hi sorry to hear your problems, like your self I was diagnosed with cronic copd and asthma 2 years ago and have had to retire on disablement. you are not being given good advice about your entitlements, you are entitled to either contribution or income based ESA depending on your NI or work record , along with this comes help with rent, mortgage rates etc. you could be entitled to PIP. depending on your circumstances.
I would strongly recommend you go to your local citizens advice, council advice office age concern if appropriate, look for your local breathe easy support group they will advise and support.
does your surgery have a asthma, copd nurse if so make contact as many times as you see fit until you understand your condition, tell your doctor you want him or her to explain fully what you need to understand about your condition, keep asking until you do.
hope this bit of advice helps remember don't take no for an answer change doctors if necessary til you get the support and medical help you are entitled to.
I had advice from the citizens advice about esa. I do not know if I am one of those softies that can be dismissed but they would not give me contribution or income based ESA depending on my NI or work record. Maybe they are just fobbing me off. they did sent me a capability to work questionnaire. I said I was in employment, so could not understand this. They said I had to fill this in so that they would only be able to pay my stamp for the one week I would qualify for national insurance contributions.
I said I need income based esa but was told I am definitely not entitled.
I have had multiple doc appointments but they are too busy and seem to dismiss me on time issues.
I changed docs last june as my previous docs were worse.
Thank you
Most doctors do work for atos like firms so might be worth asking your doctor about do they do work for atos and is there conflict of intrest.
I had all that with my doctor even went as far as threatening me with my driving licance.
Can't remember what else lucky for them BUT if your sick you can resign forthwith but must say you had to given lung diesses could not breath.
And make a claim for esa and pip No one should be made to work when cleaarly ill
I just feel let down by the people who should be helping.
I have learned so much from the internet, but that should not be the way I have to find out about this.
I just feel that when I am asking for help, all they seem to say is that they have supplied my emergency pack of steroids and antibiotics and I will be fine.
At Wednesdays appointment with my GP, she said I am capable of having a long career and a longhappy life.(who is she kidding). I had pneumonia in Jan and 2 lung attacks since then, so how is that a lond happy career and life.
They gave me the sick(fit)note for 4 weeks but I have to return to work before that runs out. I am scared to return to work. I told her that but she said I would be fine.
It seems sad that we all have to be on the breadline as well as having to deal with our illness .we are barely managing to live day to day on our wage without the threat that I may have to resign from my job. That is not on option as we cannot afford to. Maybe PIP assessors will be kind. I have frightened the living daylights out or my family and husband by telling them that I have a lung disease never mind the stress or money. And on top of that ,my nurse at the surgery mentioned a life expectancy of between 2 to 5 years.
After reading many of your posts I believe that she was being harsh and that I should take that with a pinch of salt, but I think that was most disturbing,
Mornings are a nightmare. Breathing takes 90 mins to control with meds.
Sorry to sound like a pain. Usually I am optimistic..
Your fairly recent diagnosis and then having pneumonia and infections too, would make anyone feel depressed and down.
Your Docter is being very dismissive and heartless. You need to go and tell her how low you feel and at the end of your tether. Even better, go see someone new in the practice.
Tell them you just don't feel well enough to work and you need time off as you feel your having an emotional breakdown and that the nurse, telling you 2 to 5 years hasn't helped your low mood. That should shake them up. You have to be insistant that your not coping and you feel, as you put it, in despair.
When you get your sick note go to CAB and get them to help you fill in the capability to work form and the PIP form.
Then, if you are refused, they are obliged to help you appeal because you are now on their books. They won't help you appeal ESA or PIP, if you don't go to them to get the form filled in.
Other's might be along with better advice, but, you need the support of your Docter. They can write you a letter saying you are mentally and physically unable to work for the near future.
Hi...... the remarks your nurse made regarding your life expectancy made me so cross..........Just how can she make predictions as precise as you have got just 2 to 5 years. You could of course walk in front of a bus tomorrow ,there again like many many of our regular members on these pages you could have this illness for 25 plus years. Perhaps as your nurse is so good at future forecasts she could give you this week's lottery numbers........Please go and reassure your family you have a long time left. Maybe reading through some past letters might help a lot.
Hi carolcorby, if you ring or email the BLF helpline on Monday hopefully they can advise you . The contact details are on the main British Lung Foundations website.I found myself in a similar situation , but it was over twenty years ago and the benefit system has changed since then.
Hi if you claimed and got ESA support group then this benefit is not all means tested. If you are put in the ESA WRAG group then I believe it is. Whilst you might not qualify now for contribution based benefit you might on 1st January 2017 as the tax years used to qualify changes then.
If your husband is only working part time and you are on a low income then you might qualify between you for other benefits ie housing benefit, council tax reduction, help with prescription charges, opticians and dentists. Also if you have children under the age of 20 in full time education and living with you then you might be entitled to child tax credits.
Google Govt. UK and the benefits site will come up.
It is worth claiming benefit even if you don't get it because at least your NI's conts will be paid, and a raft of other benefits may become available to you. That is your choice of course. x
hi carol .im fairly new to this fantastic site ....if you go on facebook there is a group called fightback (pic of cartoon with boxing glove ) these people are fantasic will advise help and even represent if needed ..hopefully you get the finacal help your entitled to ..
I hope carol sees this post and acts on it. No useful information about her situation on this site, just anecdote. Much better off on Fightback which is specifically concerned with benefits and entitlement.
I would put a claim in for PIP, but read all the information on the benefitsandwork website and anywhere else you can find it first. Think seriously about how COPD affects you hourly and daily. How many days of the week do you feel fit and healthy, have no breathing g difficulty? I bet the answer is none.Think how COPD restricts your daily !living, and what do you avoid doing, and if you do something, like go upstairs, can you repeat it without getting more breathless, and tired?
The other thing is the DWP said my partner had not paid enough National Insurance. I checked the with the people who manage national insurance, and he had paid enough insurance. So, please check. Soothing thoughts coming your way.
Can I just ask is your work aware that you are classed as disabled? I had lots of time off sick, and eventually had to go for an occupational health assessment, and ended up being medically retired. This helped me with my ESA, now in the Support Group.
I did not find CAB that helpful. My county disability team were more helpful, as they knew more about my condition and gave good advice on the PIP form. There should be one in your country. Just put Disability, then your county, or sometimes district into Google, you should be able to find it.
Just trying to reply to all your posts. Our children have left home a few years ago, so I is only my husband and myself at home. My employers are nor aware that I am too ill, only to keep my job. However as I am not classed as disabled, I don't see why I would go down that route, as I still do not qualify to be given any sickness from the ESA. I have not even being given the option of being on the support group or WRAG. As not receiving these benefits I must go back to work on Monday. I have an appointment with my CAB on Wednesday so may get more advice, but obviously I will have gone back to work then so have regretfully had to let my employers know that I am FIT and WELL to do my job..Hmmm
That's all I can do for now as cannot afford to lose my wage with no other financial help.
Sorry to complain again about finances. Our condition is a worry to all of us without finances taking a toll on us..
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Hi...New Here....Have found your blogs v helpful ... can you COPD experts help me with some info?
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What’s your experience of pulmonary rehabilitation?
