How has/did your lung condition affect your work life?

Did you know that lung conditions are the third biggest cause of ‘sick days’ in the UK? I wonder whether this would still be the case if people were diagnosed more quickly and given more support to managing their conditions at home.

Our policy team is looking into the impact of lung disease on working life and would really appreciate your help.

•How does (or did) your lung condition affect your work life?

•Did you have to leave work because of your lung condition?

•Or were you able to get back into work once you’d started treatment? If so, it would be great to know how you managed that and what support you had.

We’d like to use the information you give us to support our upcoming report about the economic cost of lung disease. If we can add stories and quotes from people living with these conditions, it will have far more impact with the people who can make a difference.

Thank you for your help guys!

137 Replies

  • Do you want us to pm you with stories? Or put it in here? x

  • That's entirely up to you Coughalot - whatever you're more comfortable with. x

  • Ok x

  • I worked for the DWP in their call centre for over 5 years until I was dismissed for going over my allowed sick leave (7 days on a rolling period, any longer would get official written warnings). I did have some time off with depression and bullying and was on a final written warning. I did have the odd chest infection too which necessitated the odd day off.

    I was also diagnosed with copd around a year before I was dismissed. My downfall was getting a severe chest infection which cleared with ab's and steroids then it came back. I had to have another couple of days off because my voice had gone and I was coughing violently and felt really ill.

    I had asked them if I could do admin work until I could cope with the phones but they said no. I asked them if I could do some online work only (which there was loads but it had been allocated to other teams for a couple of weeks), they said no. They were very uncooperative and just told me not to go to work if I was sick, but I and everyone else there had no choice if we wanted to keep our jobs. Those with asthma, copd or any lung conditions still have to go to work regardless, and being a call centre it was a nightmare.

    They had the attitude that if it was a one off illness ie breaking your leg etc. sick absences didn't count but they made no allowance for anyone with a chronic condition as 'this could recur'. They sacked a lot of people for illness. I would have managed to keep my job except for my copd and still feel bitter about how they treated me.

    To make things worse the fact I was sacked has made it impossible to get another job. I passed all the interviews to work on the bank admin staff at my local hospital but when they found I had been dismissed I was blocked. I have not worked since.

    Well that's my story. x

  • Oh and unfortunately as I live by the seaside most of the jobs are manual ie care work, hotel work, and there is no way I could do those jobs with my condition. Suffering with copd even though I am only mild has terminated my working life. x

  • How awful for you - and for everyone else working there with a lung condition. Thank you so much for sharing Coughalot. This is just the sorts of story that more people need to be aware of.

  • Thanks Bethany I am glad my story was some help. I think a lot depends on where you live. I am sure if I still lived in a big city I could find some work I could do. Unfortunately in my area because of high demand for work employers can be very picky whom they take on which means they can treat you like s....t and sack very easily. And they do x

  • Don't know why Im liking your replies Bev - there should be a solidarity option to click on. Hearing all the details - well you must have been devastated.

  • I was and still am O2. Added to this is the rise in the state pension age for women so I am stuck living on small private pensions and have another 2 1/2 years to go before my state pension.

    Mind you I count myself lucky to have the private pensions as otherwise I would be forced to sign on Jobseekers Allowance and be subject to their draconian rules and possible sanctions. They have a thing about forcing older people to go on courses to help them 'retrain' Well retrain as what? A carer? chambermaid? No chance I could do those jobs.

    In my self pitying moments I do feel a little bitter as I have worked full time all my life and am now slung on the scrapheap coz of minor disabilities and age. It's not fair! x

  • living at the seaside is very healthy for copd and you should look at the ways to make yourself stronger if you only have copd mild

  • I do take the dog for long walks so I get exercise. Unfortunately this alone won't help me being able to do a manual job. x

  • Don't you find living by the sea helps ? We go to the coast about 5 times a year and I always feel miles better when I'm there it has to be the salt in the air !

  • if you have mild copd there is no reason you cant do manual work i worked for 5 years with copd and it wasnt mild i also did cleaning and played football so why cant you do manual work the more exercise you do the healthier you are i have lost most of my lung function but still do weights and cycle i have strenthened my lungs with exercise

  • Well on top of the breathlessness I also have a chronic bad back which stops me doing much manual work. If I overdo it it just goes completely. It's more a combination of several disabilities which stops me doing most of the available jobs.

    And like I said once you have been sacked from a job...

  • That's shocking Bev. How did they get away with treating people like that! XXX

  • Because they can Pam. In my experience most employers in areas of high unemployment can and do sink to the lowest level they can.

    I was going to take them to tribunal but as my legal advisor said they would be employing big city lawyers to fight it. I couldn't afford anyone to represent me so I had little chance. Big people bully little people and it goes on all the time. x

  • I'm sorry for the way you were treated really must have been devastated. I find it hard to believe in this day and age, with all it's political correctness and ridiculous health and safety policies etc that any organisation, let alone one as prestigious as the DWP, would even wish to work with such policies. It's downright disgraceful, and they should be made an example of ! Bless you. XXX

  • Employment laws sound good on paper Pam but they often don't have any real bite. I was given' reasonable adjustments' for my depression ie extra breaks and 8 days extra sick leave. But they refused other ones which were the main cause of my depression ie targets, and being able to be with a good team leader, but these are all 'subject to business needs' On paper they looked like they were helping, but in practise they didn't want me coz I dared to take sick leave and they followed their usual format to force those out.

    Once I was told they were considering dismissing me my team leader (who was very GI) started watching me very carefully and when I talked to the deputy team leader about it demanded of her what I had said. The DTL told me this and apologised for what she had to say. She had to safeguard her own job.

    The DWP broke the law all the time and the Union was forever picking them up on it. One example was saying we were only allowed 30 minutes lunch break and having to give them 24 hours notice if we wanted more. It was then changed to the morning of the day instead.

    They had a 'real time' officer whose sole job was to sit in an office and check which code everyone was in. If you were ready for another call you had to be in auxillary code, so if you were taking longer than the allowed 2 minutes for after call work (notes etc.) they would ring down to your team leader asking why. They would also check breaks and on a Monday specially. I was once told off for being back 20 second late. I replied that I didn't have seconds on my computer only minutes. I said I found stairs hard to climb and was told I must make allowances for that in my break times. Awful place x

  • I was considered an 'average' worker and was about middle in my targets etc. To keep that up I had to work at the speed of light and there was no let up ever. God help those who were in the bottom 20% as they would be 'retrained' and 'disciplined' and finally sacked if they didn't improve quickly enough. x

  • There were also lots of long emails which we were expected to read and absorb but usually the phones were so busy we didn't have time. Many against official orders read them in their breaks to keep up. Others would just steal a few seconds when they could, have a quick look and delete them. But sometimes they impacted on the job so we were told off if we didn't know something had changed. x

  • Makes for shocking reading Bev, can't believe you could be treated that way. Seems as though nothing has gone your way including the pension changes.

    I hope and pray that you get a break and something comes along to ease your struggle. x

  • Ha ha Tony well I didn't believe it either until I moved here as have always worked in big cities ie London before. I have heard some real horror stories here.... x

  • Having always lived in the country I always thought that it was the big city jobs that would treat people badly and carry more pressure. Not always the case it seems. x

  • No because there is a much higher demand for workers in big cities and employers tend to try and hang on to staff rather than treat them badly. At least that's been my experience but probably only with big companies.

    Ones like SS worked in, obviously being a much smaller company would feel the impact of staff being off sick a lot more. x

  • Truly an awful place. It's everything that a good working environment shouldn't be. You poor love! XXX

  • Oh I don't really feel sorry for myself Pam. That's just the way it is round here. I have had some jobs I quite enjoyed in the past when I lived in London and I bought my flat out of it when I moved here. I am better off than many people as at least I can still get out and about - and don't have to sign on or claim any benefits! Bev x

  • Pleased to hear it Bev, but you still shouldn't have been subjected to such dreadful treatment! XXX

  • Well they just ignore it here and the locals have never known anything else. It's rarely even mentioned in the local paper which concentrates on garden parties and making the area beautiful for tourists. x

  • That's so sad, and reading some of the other stories, things need to change. Whatever happened to the DDA!!! XXX

  • That is such a sad story Bev but very typical of how people with chronic illnesses are treated. I know you find it hard to manage financially now and that is a disgrace as well. Have there been any updates in your pension situation ? Or must you still wait until you are 70 ?

  • No I will be 65 BJ. That's unless they put it up to 66 which they are talking about now.:( x

  • That's a very moving story, Bev - and shocking. DWP - I'm close to speechless but somehow not surprised. Lots of bullying 😡 xxx

  • Thank goodness for that and hoping you won't have to wait until 66. Did you get a free travel pass when you were 60 ?

  • Christ they shouldn't treat you like that ! Weren't you in a union I would of done them for unfair dismissal

  • I had the same problem as yourself in my past. And to work in a big call centre with air conditioning is Hell with COPD.

    I've been dismissed as well, because I was sick to many times, they even got my doctors report and they never done a think for me to be more comfortable.

    My doctor told me that is no environment for to work in a call centre, because of the airflow of the air conditioning and the air is not really clean of bacteria special in the winter months, where so many come in with a cold and that is not good for us. Our immune system is already weakened and we will be the next to get it.

    In my next position I worked from home for nearly 3 years. And I have been sick once with a cold that I couldn't sit on my desk. The other time I still was able to work, I didn't suffer that much and was ok. I stopped there for other reasons not sickness.

    I work now in a small office only 5 people and no air conditioning and have no problems at all.

    I find that working with lots off people and air con is definitely not suitable for me. Special air con! I never use them when In holiday, Turkey, Spain and so on. Two hours and I start wheezing.

  • Hi Bethany, I worked in the NHS as an art therapist after re-training in my 50's. I loved the work but being based in a large but cramped room with various teams I was always picking up infection, despite being careful with door handles and other germy bits. Every year I would have around 6 weeks off before I could return and my boss was distinctly cool about it and would make snide remarks and the team as a whole, despite generally being kind, didnt understand the difficulty I had being breathless when walking around. I also had time off when I fractured my ankle several years running which didnt help and I had seen the occupational health person who said i was fit for work which made me feel like a malingerer.

    The final year I worked I had two infections and an ankle break and, although they couldn't make me leave as our contracts were good ones, I felt I had no alternative but to go as my absence was putting pressure on the others in my team. I was 60 that year (2006) so I could draw my state pension and had a minute one from the NHS but I would have worked til I was 70 if I'd had the chance as I felt fulfilled working there. But I was pleased not to have to see my bullying manager any more - always a silver lining :D

    I went on to do a three year long arts project based around breathing, cycling and the landscape where we had moved to, so that kept me busy and out of trouble for a while :)

  • How sad that one person's terrible attitude could make you feel like that - and have such a huge impact as making you feel like you had to move on.

    I'm so glad you were able to find a project that worked around you and your health. It sounds like a fantastic piece of work.

  • I was cycling round the coast, photographing and visiting folk with breathing issues (e.g an old mining brass band where there were people with emphysema) and kept a photographic blog. The third year I raised money for BLF for cycling from Hastings to the Isle of Wight (it took a month). It was fun - i never got beyond the Isle of Wight as sadly the coastal gradients became too much. I could have got to Bev's if I'd carried on . . . :)

  • Sounds amazing O2 and an excellent project for harnessing so many of your talents.

  • Ha ha you are welcome anytime chuck! I will even give you my bed and sleep on the sofa :D Bev x

  • Thar sounds fantastic. I'd love to see your blog!


    The site is very neglected now, I need to update it but it feels like another life as it was 10 years ago. The blog is in the list of pages down the left hand side. I reversed it so you can read it from start to finish but its quite fiddly as you have to keep clicking on a new month.

    The project was covered in Breathing Space in 2007 which I don't think the BLF produces any more.

  • sorry, blog is at the top of the home page

  • Your photos are beautiful!

  • Thank you :) I used acompact camera as I had to carry minimum weight on back of bike!

  • Yes well done for retraining in your 50's O2. That can't have been easy and I am sorry you had to give it up because of your illness. x

  • That workplace bullying must have been really hard 02, I'm surprised you managed to put up with it for so long. But at least you continued until you were 60 and I only finally admitted defeat at 63, so we didn't do too badly.

    But sometimes you wonder what you might have achieved, if you didn't have a chronic illness, don't you ?

    I'm sure there are still jobs that you and I and lots of HU members could do from home. Let's brainstorm and see what we come up with :)

  • Loopy Lung Collective Services? :)

  • What services though ?

  • All the ones we've got between us BJ :D So much can be done online or via Skype these days!

  • I had a good contract too O2 but they made me leave. I am sorry your career was cut short by all this but glad you could get your pension at 60. I thought I would get mine at 60 too until they suddenly (and illegally apparently) upped it so rapidly. x

  • I know, disgustingly unfair. And call centres are notoriously vile Bev x

  • I know O2. But there is very little admin work where I live so people have no choice but to put up with it. They also paid well. The only other big employer near me is the hospital. I am still trying to get in there.

    Others who have worked there say morale is very low and they treat their staff badly, but I would take it even if it made my depression and copd worse. I have even thought of taking a more physical job and just telling my doctor to give me very strong painkillers so I could do it. Don't think my lungs could take it though anymore. x

  • How sad BJ. Seems like you found creative solutions to the difficulties for quite a time though. I really sympathise about the stress of deadlines which I had loads of before I re-trained. And constant talking is certainly taxing for those with breathlessness.

  • Well done Bj you are inspiring. That's one reason why I don't feel sorry for myself coz there are so many with worse illnesses than me on here who cope so well.

    I was lucky when young because I was always fit and healthy and never gave it a second thought. I just lived my life at breakneck speed and coped with it all. My depression was always a problem but I managed to work round it then mainly. x

  • Depression is in many ways an even heavier burden to handle and so hard for you to handle both. But you're doing a great job Bev. I have a mental image of you walking your friend's dog along the seafront, playing darts in the pub and working in the shop, with your hair always blown about by the wind. I never think of you as poorly or down in the dumps. :) :)

  • :D Billiejean if it helps carry on thinking of me like that my friend. It's more true than not Bev x

  • It's such a shame that you had to stop working with the language school. But it's also lovely to hear that you were able to find things that worked for you for a long time, even if it wasn't as long as you wanted.

  • My lung condition really did impact on my working life. I worked in bars for many years, and in a Smokey environment. If I had been given the support and information ten year ago I may well still be working now. I could have gone into a job that did not affect my health. Unfortunately now I am unable to work in any job,and for me who has worked all my life it's having a great impact on me.

  • Sorry to hear that Damon. If they'd brought in the no-smoking legislation earlier you'd have been better off. Awful to find you can't work when you want to and you've been used to doing so.

  • I know how you feel Damon. When I lost my job I spent ages feeling useless, unwanted etc. as I have always worked full time too. Now though I work as a volunteer in a charity shop and have discovered my purpose again. It would be nice if it was paid but I feel as though I do a good job.

    It give me a new interest, gets me out of the house and having company and best of all I have made new friends. I also know the job well now and have added extra stills which may help me find a very part time job eventually.

    I have rediscovered that I am a good intelligent worker who can think and take responsibility. That to me is worth a lot. x

  • How awful that the work environment itself has led to/exacerbated the lung condition that has stopped you being able to work. Thank you so much for sharing your experiences with us.

  • That must be hard for you Damon. What a shame you didn't have a chance to train for another line of work.

  • Yes it was,now I am doing a BA honours degree with the open university. Classical art history and humanities. It's very interesting xx😊

  • That's wonderful Damon. Good for you !

  • Brilliant Damon :)

  • Having had bronchiectasis all of my life I can only say that looking back, yes, my lung cpndition definitely blighted my working life and ability to follow a path in life that I would have preferred. However, I was brought up by my Mother to be a 'normal' child. If I had no energy or felt unwell I was not allowed to give up on anything and could only stay in bed if I had what was deemed a proper llness or a full exacerbation when I was left with my antibiotics and library books whilst she went to the family business.

    I felt guilty every time I had to stay off school. The fault was mine, not the lung condition.

    This continued through my education with games teachers belittling me because I coughed or had a chest pain. I did not apply to University because I was afraid that my exacerbations would mean that I would fail to complete the work

    I trained as a beauty therapist, went on to work in various beauty salons and Elizabeth Arden in Bond Street as a consultant .The physical nature of these jobs meant that even when not in an exacerbation I could have days when treatments and standing were too much. I had no support or understanding from any of my employers or fellow workers. After two exacerbations close together the under manager at Elizabeth Arden (miss Tracey-lovely woman-not!) said in front of the whole front of house staff ' one more day off Verity and it's this' whereupon she drew her finger across her throat.

    I went on to be a disc jockey around the world. This suited me because I worked comparatively short hours at night and could sleep when I liked in the day. During my marriage I did not work then when we started a factory I did the PR and the books. My own boss, work could be done to the demands of my body.

    Going back to uni in my forties and volunteer work in history associated activities is a joy and fits around my condition. This is the first time that I received recognition of my needs (I had to ask for it).It does not bring the money in though.

    My overwhelming experience has been of a sense of failure brought on by the fact that bronchiectasis is very capricious and debilitating. We often look very well and there is an almost total lack of appreciation that we can be completely worn out and trying desperately to hide that we need to clear our lungs.

    I never had an employer who took this on board or was willing to accomodate it.

  • What's so heart breaking about these life/work stories is that people feel they're failures. You're all suceeders, who've been trying to find a way to work, achieve and fulfill yourselves despite your lung conditions.

    The people you worked with and for have failed you, and you have achieved so much despite them.

  • Oh how I hate bullying managers stillstanding. That was such a cruel thing to say in front of everyone - and they just don't have a clue what you're dealing with. At least you found the DJ-ing and other things where you had more control. And fulfilling things later on. My sister in law has had bronch most of her life and would recognise what you are saying.

  • That's awful SS. Well done you for finding ways round it. I never had the get up and go that you have. x

  • It would be appalling for your manager to say that to you when you were alone. To say it in front of other people beggars belief!

  • Thank you BJ. I guess that when you are made to feel that you are not up to the mark from an early age it sticks with you. My Mother had no support and she was not going to have an invalid daughter so it was her way of dealing with something nobody knew anything about. It makes you tough though.

    You and I have followed a similar path in our achievements and through being on this site I have learned to be proud of all that I have done. So should you.

    There are many on here who also cause to feel that way. In fact, all of us because we wake up, turn on the computer and interact with everybody else.

    Now that I am an old bird I take no nonsense from anybody and make sure that without labouring the point, people know what I have to overcome and what I need to be part of society. On the whole it is accepted well and funnily enough now that I am a (not so) sweet little old lady I get a lot of kindeness from members of the public.

  • Not quite seeing you as a little old lady, sweet or otherwise :) think you have a way to go yet :)

  • Think that witch coming through the woods in Disney's Snow White......

  • :) :) :)

  • Amen to that BJ x

  • Hi Bethany,

    After working as a motor vehicle mechanic for 37 years I fell ill quite suddenly at the age of 51 with a double pneumonia which turned into ARDS and then left me with Pulmonary Fibrosis. They now tell me this PF is caused by an auto immune disease called (anti jo-1 pos) which I guess was triggered by the pneumonia etc.

    I was hospitalised for 4 months and it was a further 4 months before I attempted to get back to work. Of course with 30% gas transfer, now 23% (DLCO) it was impossible so I had to give up and settle for a life on benefits.

    I had no problem claiming DLA (support group) and ESA (contributions) because of my breathlessness and poor mobility on 24/7 oxygen.

    I also had a private critical illness policy which at first wouldn't pay out due to not having an illness that was covered on their list of criteria for payment. It was only later when getting on the lung transplant list that I became eligible and they paid very quickly.

    I am now 57 and haven't given up on a return to some kind of work but it will take a phone call from the transplant team to make it possible :) .


  • Tony I think you are wonderful in the way in which you constantly overcome problems and find other solutions. I think all of you are great too and humble my experiences. Bev x

  • Its what mechanics do, we solve problems and fix things. Sadly fixing myself is proving to be a tough one :) . Today I've just had another oxygen concentrator fitted upstairs to help solve the problem of getting up and down the stairs to alter the oxygen flow.

    I've also had a permanent concentrator delivered to my Dads today for when I visit so I don't have to carry as much oxygen with me and worry about running out.

    Life's hard these days but it can be made a little easier with a bit of planning, help from my oxygen nurses and Baywater Health. :) . x

    The man from Baywater was a jolly sort, he told me the average life of someone on oxygen was 2 years and how well I was doing as he had been delivering to me for 6 1/2 years now. Not really sure about wanting to know those statistics but he told me anyway. He also told me of people he delivered to, some who survived transplant and others who didn't. Sometimes people can give you just a little too much information :) . x

  • Oh gawd Tony, just what you needed to hear - not!

  • Tony I will keep everything crossed for your phone call!

    I can't imagine what it must have been like to get so ill, so quickly. And then for your insurance not to pay out too! Thank you for telling me about this.

  • Tony, I often wonder ( as I'm sure you do) how a fit, healthy man should suddenly come down with such a severe pneumonia. Did you have any respiratory issues prior to that time ?

  • Hi Bj,

    The only problems I had noticed was sometimes while playing Tennis matches I would get out of breath before others but then I used to charge around more than most. The first thing I noticed was only days after cycling on the Malvern's and thinking how fit I was. It was a feeling as though my lungs had expanded inside my chest and were hitting something before a full breath had been taken. There was still no sign of breathlessness at this point but that soon changed.

    A few days later I tried to cycle the same route and had to get off and push, I felt very breathless, hot, cold and pretty awful.

    I saw the doc on my 51st birthday and he gave me antibiotics. He said come back in 4 days if there's no improvement. I returned as he said but was by then so out of breath I could hardy speak to him. His very words were shall I call an ambulance or can you make your own way in to hospital.

    My brother took me in to MAU where they decided to keep me in for the weekend. That weekend was 4 months long and my life had changed completely. Somehow I never felt to down about it all because I had survived and was very lucky to still be here.

    I had never smoked but had probably breathed in more exhaust fumes and dust than most working as a motor mechanic but how would that cause the sudden onset of the double pneumonia?

    The ICU consultants thought I had just been unlucky and had breathed in something fungal which didn't like me much but they were at a loss to why it got so out of control and did so much damage.

    My big brother was the one who had suffered with lung problems from an early age, I had never had a problem. :) . x

  • That is truly bizarre Tony. The incident on the bike was probably the beginning of the pneumonia but a bit of breathlessness at tennis is to be expected. The fumes and other things you might have inhaled at work do seem the most likely suspect but you'd been working with them for do many years before that, without incident. It's a mystery and a blooming infuriating mystery but as you say, you survived and that was the most important thing at the time. So carry on amazing the O2 delivery man and we're all praying that 2017 will be the year of 'that call.'

  • I had to work around the needs of my three asthmatic daughters , but I don't know if things are different now....there seems to be a benefit for people with children who have health problems.

    But thirty odd years ago I worked as a supply teacher...on a one day contract. It has been known for me to be up all night, take a child to hospital, and then go to work...or be called to A and E in the middle of the day. No work meant no pay.

    Then my breathing problems were switched on after pneumonia, and I went back to work too soon.....but in the end it was impossible to continue although I did can't teach with a chronic cough and breathlessness.

    Dangerous for the pupils as well as me.

    Thankfully I was eligible for my State Pension at 60.

    I guess the situation would be different now, as asthma treatments have improved.....then it was Ventolin only, prednisolone in an daughter was later given Uniphyllin but had to have regular blood tests at the hospital. Only later were steroid inhalers prescribed.

    On the bright side....I gained a degree from the OU afterwards....they were amazingly accommodating about my breathing difficulties .

  • I think benefits for parents of children with health problems are in place, knitter, and you're right that treatments have improved. It's a pity that employment practices and attitudes seem to be becoming more Dickensian.

    They can't interfere with the delights of being a granny, can they? x

  • I do spend time listening for a wheeze from my granddaughter though....and every cough.

    My grandmother, mother, me and my daughters all wheezed and I am keeping my fingers crossed for this new baby, that she will be ok .

  • Hi Watcordgirl, Well things have improved somewhat for people with children who have chronic conditions. My great nephew was diagnosed. with type 1 diabetes and ceoliac this year. His Mother's employers SSE have been wonderful. A state benefit is available but they are making her jump through hoops. Doctors and consultant results, test results and now an assessment on a 12 year old boy! Then it appears some kids with type one get the upper level, some the middle and some the lower. Sheer madness. Of course, there was no help when I was a child.

  • It must have been so stressful, worrying about your daughters, trying to care for the children in your school, worrying about having time off - and all while being sleep deprived!

    Very well done on your OU degree though!

  • The exam nightmare is as terrifying every time and such a relief to wake up from.

  • The side effect of Clenil for me is nightmares.......bad dreams about unruly children and exams I haven't revised for.

  • I'm sitting here so angry and close to tears, but that's probably because I'm cross - not about me but what people in the posts above have had to put up with.

    I've been a nurse all my working life, in different places and different roles. I finished as a community palliative care sister, caring for the terminally I'll at home, but attached to the local hospice. I loved the patients and the work and was really happy and fulfilled.

    Our office was based in the medical centre where I was registered as a patient. I was there for 13 years. All that time, I had a chronic cough. Yes, I should have known but think I had a large paper bag over my head and genuinely didn't see what I didn't want to see. My GP said nothing, despite prescribing frequent antibiotics for chest infections. I worked through each one, and didn't take time off work.

    I retired shortly before my retirement age, 63, partly because of changes in the way we had to practice and partly because I was getting 'burnt out', and probably more ill. Still nothing said about having COPD.

    I wanted to do some sort of voluntary work and for 4 years helped in a small village school, working with 6 and 7 year olds. Much of it was one-to-one with pupils needing extra help. Most had colds and coughs and couldn't grasp that coughing in someones' face wasn't a good idea. I was picking things up on a weekly basis, and began to get a bit breathless. In the end, my GP gave me an inhaler and sent me to the respiratory nurse to be shown how to use it. She did a spirometry test and told me I had moderate to severe COPD.

    This isn't what you were asking for, Bethany, but it feels right for me to talk about it. And it's a different example of people not being looked after appropriately in the workplace - to the detriment of their health!!!

  • It does seem very strange that working as you were, surrounded by doctors, nurses and medical personnel, that nobody ever suspected or suggested, it might need looking into. And IMO, neglectful of your place of work to allow you to always work during chest infections instead of taking time off. They probably didn't want to lose you but in doing so almost made losing you inevitable. It's not surprising that you burned out.

    The school probably didn't want to lose a valued volunteer either but surely, at that stage, you must have been showing signs of sob and exhaustion.

    And your doctor finally gave you an inhaler when you were already heading for severe COPD ? Someone should give him a medal.

    Of all the stories, yours has made me the angriest Sue. It's a very eye-opening account of the different ways employers can do things that are detrimental to the health of their employees.

  • Like Billiejean I am sitting here gnashing my teeth! How unprofessional of your practice to allow these things to happen and progressright under their noses when you were a patient too!

    Disgusting. I can't find any more words, I'm speechless!

  • Wow. It's hard to know what to say - I hear similar diagnosis stories all the time and even similar work stories occasionally but never both rolled into one. I'm not surprised that you're so angry. I'm glad you did share this now.

  • For BJ, SS and Bethany ,

    Thank you. I'd decided to delete my post because it wasn't answering the question about time off work due to lung disease. But I'll leave it.

    Btw, Bethany, my cross/angry feelings were about the posts before mine and the disgraceful way people can be treated. I'm not angry about myself. I was stupid and the fact that doctors looked the other way seemed to suggest I was right not to be concerned.

    If anything I can't understand why no-one suggested working all day with coughing children might be a bit silly. Loved it though!

  • Hi Watford girl, I was going to delete my post and replies too as I thought later that my case would have no bearing today, as there are better treatments for asthma now .

    It was a difficult time but we just got on with it as best we could.

    But deleting it would mess up the thread.

  • Just because the situation has changed, it doesn't invalidate your experience. And on one level, it's reassuring to know that some things are changing, even if they haven't changed enough!

  • Sue I can't believe either that being surrounded by medic etc. and your own health was ignored. Is that common within the NHS? Is it like healer heal thyself? If so that's disgraceful.

    I am full of admiration for nurses of all grades who work incredibly hard and in such a demanding and unforgiving environment. To literally take responsibility for lives as you did is amazing and it's a job I certainly could never do. You are a star. x

  • How sad and ironic Sue that you were in exactly the place where it should have been picked up. How great that you loved the hospice work so much and how sad that you had to leave it. Your story sounds exactly what Bethany was asking for. :)

  • Only left 3 months early, and that was because things were changing., and in a way that I didn't much like. 😕

  • Pete worked for a bus Company and had to start the buses up each morning. He rarely had time off but l don't know how he could breathe with all the fumes.

    After seeing a consultant at our hospital Pete was advised to retire early from work (49) which plunged him into depression for a little while as he really missed work.

    I did get the impression that the hospital doctor didn't have much hope for Pete as he told him to go and enjoy life while he could. Xxxxxx

  • It must have been so awful standing in those fumes each morning. I'm not surprised he found it so hard - 49 is so young.

  • Terrible about breathing those fumes and becoming so ill, but I ticked like, sassy, because I'm so pleased he's still enjoying his life. The hospital doctor obviously didn't realize what sort of lady Mrs.Pete was! xxx

  • Thank you Sue. Things have changed a lot over the years but Pete is still here thank goodness. Xxxxx

  • I second that Sue. Mrs S is like a force of nature when it comes to looking after her husband.

  • I didn't realise Pete had been sick since age 49, Sassy. No wonder he was plunged into depression. But you've both coped so well and you are such an amazing carer.

  • And always finds time for a caring word to us.

  • Absolutely ! She's a star.

  • I belive if you look after your lungs the look after you.

    Shame it took me to be dieased sick and ill to discover that nugut.

    But on subject of work i had to stop working driving when arms went numb and i was falling asleep.

    I put blood round mouth threw bad teeth BUT now i look back and think was prob granuloma or the pneumonea That turned to sepsis THAT my gp put down to anxiety.

    Might not be long story BUT with any lung dieases is just as devastating

  • I think I'd have found that really frightening as well. How frustrating that your GP didn't find the real cause of it all. Have you had a proper diagnosis now?

  • I worked for local government. My experience was a 100% better than coughalot2. I was struggling with chest infections almost every other week. Diagnosed with copd colonised with pseudmonas and aspergillosis. My line manager was a star she supported me and tried to understand what I was copying with. I was diagnosed shortly after this with Osteoporosis and found out I was a coeliac. Phew! I also have extensive diverticulitis. I missed so many weeks in work that eventually something had to give. ME. I was referred to occupational health on the grounds that I was no longer able to carryout my job. They were great and ask lots of questions about breathlessness and the impact of my job on my health. I agreed to try a desk job for a few months to see how I went. They even moved my desk down stairs. Unfortunately I had another bad infection and was on sick leave again. Occupational health recommended me for Ill health early retirement with supporting documents from my consultant and an independent Doctors report paid for by them. I was given early retirement. I am grateful to them as my condition has continued to decline but I no longer have the stress of my job or the travel everyday it was a real struggle. Money is tight as the small pension does not go far and I do not claim benefits. I also have to say I struggled with the thought of being on the scrap heap at 52. Thought my life was over, what would I do to pass the days? But it has been a godsend (not that I believe in god) lol. I struggle everyday to breathe, but live for the one day you get occasionally where you can take a deep breath. My time is my own to manage this illness the best I can. Hope this helps. My experience has been positive and I believe that is down to a brilliant line manager.

  • It's wonderful to know that in some places people are helped and supported when they start having health problems. Your line manager sounds absolutely fantastic!

    It must have been so hard to retire so young, but I think your attitude towards all this is fantastic.

    Thank you so much for sharing!

  • Big impact on working life. I have Bronchiectasis and Asthma as some of you know. I have had 7 weeks off sick - different periods of time. Have been trying reduced hours - difficult - doesn't pay the bills. Fortunately manager is understanding to a degree - everyone wants reliable staff. Have now got liver problems - maybe the medication but hospital investigating, but again off sick waiting for GP appointment having tried going to work yesterday and had to come home. Real possibility I will have to stop work - how long do you keep trying - no financial relief for loss of earnings.

  • Hi hoping2improveveryone I was over a year on and of work before they decided I needed to see occupational health. And a further 3 months before they decided it was time for me to go. I have had lung problems for over 20 years but only in the last 3 years did it significantly impact my working life. Hope you improve soon.

  • Thank you was occupational health through work or doctors?

  • Work. They sort of insisted as part of my on going employment. 😷

  • Thank you

  • I'm so sorry to hear that you are having so many problems and may have to stop work soon. It must be a relief to have a (fairly) understanding manager though. I'm glad you aren't having to battle your employer for your rights as well as going through all of this.

  • Thank you I would agree I am fortunate in my manager

  • Really pleased to contribute to this goes:

    Used to work a university in the north-west and made them aware on the OH form I had asthma, as thought it was important to be upfront, which they said was classed under the DDA (as it was then). However the GP they made me see disagreed for reasons I never got to the bottom of.

    About 5 years after I started work there, I had a major asthma attack in 2011 and saw OH, who was the weirdest nurse I've ever met, she spent the first 5 minutes implying I wasn't as ill and berating me as I said I was as I hadn't spent time in ICU at hospital, which she seemed to think meant I was swinging the lead. She then apologised later and said "sometimes people at work play on these conditions to get what they want at work and if you repeat that outside here I'll deny it." As I say, a very odd person but she did agree to my request to be considered under the Equality Act.

    I then had a meeting with HR and my boss and I said to HR I thought it was unfair my asthma was treated as if I'd been off with a cold or a stomach bug as they'd put me right up to Level 4 on the absence levels. The HR woman just didn't care. I later had another meeting with my new boss who pressured me to sign a form with "targets" not be off ill for another 12 months! I told her I couldn't make any guarantees as asthma is a chronic condition and although I do my best to take care of it, sometimes you just get ill. She said I'd be disciplined if I didn't sign the form and if I breached the 12 month target. She said HR had got her to make me sign this form, I later found out they hadn't so it was probably her idea. I spent the next year going into work at times when I was ill, in fact I had an asthma attack in the toilets once which was pretty frightening, thank God I had my inhaler, but i kept quiet about it because of the form.

    I then had another asthma attack in 2013 and took time off as I was also fed up of going into work ill and having snarky comments made about my asthma by my supervisor. During this absence a senior manager rang me and basically said she wanted me to come back in for a meeting to do with my work even though I had a sick note. I refused and told HR what she'd done. Next thing I had another OH meeting with the same nurse as before who told me HR were looking at me as being too expensive to keep on (her actual words), then saw the OH doc, who told me I didn't have asthma at all but a heart condition and her and the nurse tried to force me to go for an ECG there and then! I've had asthma 30+ years and she told me my Ventolin was just a placebo. It was horrible.

    So I lodged a grievance about all this and not only was none of it upheld despite all the evidence, notes and diary entries etc (and they denied the form with the targets on even exists) but I was then put through a disciplinary hearing for something that was made up, it seems in retaliation for the grievance. They dragged me in for the hearing while I was recovering from the asthma attack which took months to settle due to the stress of it all. They made up so many lies and tried to sack me for gross misconduct but I escaped with a final written warning cos I had so much evidence to dispute their lies. I had two jobs there, one I resigned from as they were still being horrible to me, one I was made redundant from shortly after because they just wanted rid of me. My GP was very helpful throughout, couldn't believe it all, the consultant did a report for the employer which was incorrect that they used against me, it took me 9 months to get an apology from the hospital, by which time I'd already left the job. The union did nothing, HR colluded with the bullying. Horrendous experience, just for having asthma.

  • Truly horrendous experience.

  • That is disgraceful! I'm so sorry you had such a terrible time. Are you working elsewhere now?

  • Thanks, no, I've been unable to get another job in my sector, I think word has got round about what happened. I've been unemployed for a while and my asthma has recently got worse again so seeing another consultant now and trying to claim ESA, which is another story...!

  • I'm so sorry to hear that. I really hope your consultant can help you get it under control. And good luck with your ESA. If you are having difficulties with it, someone on our helpline might be able to give you a hand. (03000 030 555)

  • thanks, just glad to be able to tell my story as a lot of people aren't aware of these issues with workplace discrimination and benefits until you go through them, the Equality Act is all very well but unless you're able to pay for a solicitor to take your employer to a tribunal and hold people to account or get the service you expect off the NHS then it's very difficult to have a 'normal' life when other people won't let you. If other people have a problem with me having asthma, that's exactly it, it's THEIR problem and not mine!

  • Well said!

  • Fortunately I did not suffer when I was at work. Can anyone let me know if a dehumidifier is beneficial to anyone with COPD. Thank you

  • It is unlikely others will see this here. You would be better clicking on 'Write a post' (top right) and making a new post to ask about a dehumidifier. Alternatively, try putting dehumidifier into the search box to bring up any other posts relating to the subject.

  • Yes I left work because of my lung condition ..I am a social worker and couldn't speak to people without coughing my guts out.

    I reduced my days at work but still couldn't manage to carry out my dutoes as I have constant dizziness and fatigue.. really debilitating.

    As soon as I am on treatment I will be looking to go back to some kind of employment. .I'd be devastated if I couldn't job, as for other people, is a.major part of my life and my identity.

  • Hi Minsha, that must have been so hard. I really hope your treatment does get your condition under control so you can go back. Has your doctor told you when that will start?

  • When I was with a multinational telco I ended up in hospital and ICU for 32 days. My Manager was asked to see me and ask when I will be back to work? But would not accept that he was unable to as I was in a coma at the time? I was off work for a total of 5.5 months and was threatened with a written warning for being off so long. I did speak to the equality commission who said if they do they will take the to court. I had informed them of my lung and heart conditions in my application.

    My last employer sent an email to all staff telling us not to use the disabled car park as they need it for the van for loading! Even though I explained I have great difficulty walking far they insisted I most not use it. They then moaned because I was late as it took me too long to walk from where I had parked my car.

    My health has worsened to a level now I cannot work.

  • It takes a lot to shock me Offcut, but that has done it! Not only is that horribly cruel, but als unbelievably stupid. I'm so sorry you had to go through all of that.

  • They said that as long as my broadband is high enough I could work from home but as soon as this was looked into my same company broadband speed dropped below the minimum ? There was a few dirty tricks they did but in the end they made me redundant.

    My last company just had an attitude of, if you do not like we will find someone else.

    I cannnot leave out my conditions on the forms as I need regular blood and health checks, I have now found unless they get 100% minimum you are not wanted? If you do take them to court then that will red flag you for future job hopes.

  • That's just awful. And really highly how urgently something needs to happen to help people in that situation.

  • I think having read the stories so far I've been incredibly lucky.

    I've been a civil servant for 20 years and been diagnosed for the last 6 years. As soon as I was diagnosed (because of the transplant issue) I went to see my union rep and together we went to see HR.

    They have so far been excellent. They've adjusted my sick leave levels so that I can have a more days off without receiving the letter. I was given a laptop so I could work from home if I wasn't feeling great or more importantly my colleagues were all coughing and spluttering.

    I also work from home for a say each week ao I don't have to travel. They've given me all the time I've needed for hospital appointments and even special paid leave to attend the think tank event in London. I was even asked to speak at an executive team meeting about living with an 'invisible disability' along side 3 other colleagues suffering from other invisible disability. So I think I've been lucky.

    That said - I haven't breached my sick leave yet in anyone year so it may all change. It seems my little patch of the civil service is more enlightened than others.


  • Hi Marie,

    It really does! It's so refreshing to hear about an employer who's getting it right. I'm really glad you shared this as it's really helpful not only to show what best practice looks like but also that it's already happening in some places. I really hope that they keep working with you to make this work.

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