Hi I have very bad Bronchiectsis and Im seriously struggling with it. I cant keep a job this year as Im coughing and forgetful and stupidly tired. Ive had 5 part time jobs this year and I got the sack for most of them. My confidence is at rock bottom.
I worked in the NHS for 16 years with no problems as it wasn't as bad then. My latest manager is making noises about letting me go again, Ive only been there 5 days!!
Does anyone know what to do if someone isn't well enough to work. Will the GP sign me off longterm? If so how do people manage financially?
It would be great to hear back from you guys!
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poshpilly
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Hi poshpilly, welcome to our forum. I have bronchiectasis too, which for various reasons is classed as "severe", & slowly deteriorating, but I don't feel it so. I have other medical problems too, but from a lung point of view I actually feel well most of the time! This is because I see an excellent bronch specialist, a really good GP, I have a tailored drug regime which suits me well, and I am very conscientious about doing chest physio daily to get rid of all the rubbish clogging up my lungs, so although I do a lot of coughing when doing my physo, I don't cough much during the day. I am scrupulous about hand hygiene etc so usually manage to avoid chest infections. I do get tired, and at 64 I'm no longer able to work, but I don't think of myself as ill. I'm out & about every day and walk a lot.
I feel you should be able to get ESA without much trouble, & possibly PIP. I worked p/t until I was 60 but then I just ran out of steam & couldn't do it any longer. I was still 2.5 years off getting my State Pension, so my GP signed me off (for 3 months at a time.) I applied for ESA & got put in the "support" group. I found the DWP staff to be extremely helpful actually. I only received ESA for 12 months but that was because my husband's modest pension got taken into account after that & we were deemed too "rich", haha. I never applied for PIP (stupidly) and now am too old but I get the State Pension now, so we manage ok.
Phone the BLF & speak to an adviser, as others have suggested. Your GP knows your lungs are in a bad way, your consultant will have reported to him on the CT scan. It's a poor GP who doesn't realise a person can look well & be really quite ill! A bit of a tan and some make-up can work wonders can't it? Once your benefits are sorted you must start getting better treatment for your bronchiectasis. You need a really pro-active consultant who specialises in bronchiectasis and is prepared to put some effort in & come up with a treatment plan which will improve your condition, or at the very least stabilise it. There's no need for you to feel this exhausted.
I have also been diagnosed as having severe bronchiectasis. Is there a specific criterion for being diagnosed as having a mild moderate or severe diagnosis or does it depend on the opinion of individual consultants. I should have asked my consultant when she told me but I was so traumatised by the word severe I couldn't bring myself to ask what that actually meant. Susan
Hi phoenix! Assessment of severity in bronchiectasis has been clarified by EMBARC, the European Bronchiectasis Registry (a relatively new organisation.) You can find the index here, & there's a way of calculating your own level of severity, if you want to
bronchiectasis.eu/severity-... As you'll see, "severity" is significantly increased by factors such as recent hospital admission, number of lobes affected, whether or not you're colonised with pseudomonas etc.
But in my view, the severity assessment needs to be viewed in context! Using me as an example - I have a score of 12 (definitely severe.) This is despite my having very good lung function, and very few exacerbations. My score is pushed up because 3 lobes are affected & I'm colonised with pseudomonas (even though it's well controlled). So this is why I wouldn't count myself as "severe", even if that's the category I fall into. There's more to it than that, I feel.
Patches2 I've found it, for some reason there's a severity index on another part of the site, which includes it. I like to provide a link if I can, so people know it's correct, so here it is bronchiectasisseverity.com/...
Hi again Patches2 & RibvanRey ! I've been looking at this again & think the only index you should use is the one with the MRC Dyspnoea scale set out in it, here bronchiectasisseverity.com/... It's a little more detailed in places, so must be more accurate.
Amazingly, I'm now 7, not 12, using this one! The first one I posted asked "Hospital admissions in last 2yrs?", so I ticked "yes". But the 2nd one asks if you've had any admissions "for a severe exacerbation". Well I was hospitalised for worsening breathing, but I wouldn't call it a severe exacerbation, so this time I've ticked "no", and that's brought my score down to 7! I'm surprised answering one question differently reduces the score so much, it makes you wonder. Though it's been designed by Dundee Uni, who are leading a lot of research in bronch. 7 makes me moderate, not severe, which is definitely a better reflection of how I feel.
In any event, I think we must view all of this in context. And as Beth1949 says, we must not let our illness, and definitely not these labels, define us! It's only a small part of who we are.
Many thanks Hanne. I did the assessment again and managed to get down to 10. At least it is not as bad as 13. I suppose in the long run one is as bad as they feel. On a scale of 1 to 10, 10 being very bad, I suppose my scale is 5 which is ok (I think!)
Thank you for that Hanne62. I am going to look now. Interesting what you say as all my lobes are affected but my lung function is good and most of the time I feel fine. I do try to look after myself. I suppose we shouldn't allow ourselves to be defined by a word. Thanks again😊
It was quite awhile back that I saw on my specialist's report the word "severe' and it really took me by shock. But going back to what Hanne62 said, it has to do with history. I have gone a whole year now without being in the hospital. I have gone a 1 1/2 yr without having a bronchoscopy. Prior, I have had numerous hospital stays and bronchoscopies (5 in one year). So personally, I don't feel 'severe' anymore. It's just a label.
A lot of my 'improvement' is due to this forum. I have learned a lot about taking better care of myself.
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but I get the State Pension now, so we manage ok.
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