I am new here...

[poshpilly]

Hi Im new here! I have severe Bronchiectasis. I got diagnosed 15 years ago, it was border line back then and the only symptom I had was a dry cough.

No health professional reviewed me at all in 15 years. In the end I asked my GP for CT scan. The consultant put his head in his hands as my scan was horrendous!! Both lungs were covered in scars! And I had a huge patch of Pnemonia too.

I worked with the consultant in endoscopy.

Since then I have had good days and bad days. To start with the antibiotics helped. Then I got forgotten again for some years, no GP knew how to treat me...

Ive managed to hold down a job until this year. I kept getting the sack for coughing, extreme tiredness, Confusion and forgetfulness. Im off again now, but the manager is heading towards sacking me and Ive only been there 5 days!! All this has knocked my confidence completely! No one believes that Im ill as I look perfectly well.

I can now only do one job at home such as cleaning the bathroom, then I have to sleep. Does anyone know if the GP can sign someone off forever with Bronchiectasis?? If so so how do people live financially? Its the worst Ive ever been...

[Banksy70]

You can be signed off as unfit for work continuously, I should know, I had to retire from my job and claimed Sickness benefit/Invalidity Benefit and then DLA. Go to the Disability Rights foundation and get their help regarding how to word your claim. Your health doctor at work should help with this.

[poshpilly in reply to Banksy70]

Thank you Banksy70 for getting back to me. Because I look ok most of the time people don't believe I'm Ill!!

I stuggle at home to do things and especially at work as they keep sacking me as I get ill. Do you know what happens if my GP wont sign me off for good? As GPs don't know much about Bronchiectasis!

[Hidden in reply to poshpilly]

A GP should give you a sick not but no doctor can sign you off ill for life unless you have a terminal illness and have 6 months or less to live. After 13 weeks on sickness benefit (ESA) you will have to attend an assessment. You will then be either kicked off ESA, put in the ESA work group (where you are seen as able to do some work), or the support group where you won't have to look for work. You are usually reassessed again after 18 months.

As well as ESA you can also claim PIP (personal independence payment). This is a separate benefit which has 2 aspects - care and mobility. It is not usually taxable and is extra money to help you deal with your illness. You will have to attend assessments regularly for this too.

You might also quality for housing benefit, mortgage help or council tax rebate depending on your circumstances and whether there is other income coming into your home. If for example you live with someone who is working then their income would be taken into account too. x

[RibvanRey]

Have you been given a CT scan? I ask as this is the only way that Bronchiectasis can be diagnosed. It is utterly impossible to diagnose by using a stethoscope and equally impossible to diagnose by using Xray.

So all those years that you believed that you had Bronchiectasis you should have been under the care of a Consultant in Chest Medicine.

Only you and a lawyer can determine if you are a victim of medical negligence and might successfully claim damages.

I have severe Bronchiectasis and am on oxygen 24/7 but I do know younger people with lesser levels of the disease and have been signed off 6 mths at a time until permanently.

Keep up you meds. Keep up the exercises and keep a good diet.

Very best regards, Rib

[poshpilly in reply to RibvanRey]

Hi yes I had one ct scan years ago, my lungs are completely covered in scars!

But had no intervention since, no appointments no nothing. GPs did nothing. And consultant discharged me from his clinic

No I'm truly struggling can keep a job because of it, constantly tired etc, I've slipped through the net completely

I have a mortgage and bills to pay, will I get benefits that will cover it?

[annienell]

Hi Poshpilly, I'm sorry to hear you are feeling so unwell. I suggest you phone the BLF Helpline (03000 030 555) on Monday. They have experience of your condition and will also be able to advise you on how to proceed with a claim for financial help.

Best wishes, Annie

[poshpilly in reply to annienell]

Thanks for that Annie I will try that

[poshpilly in reply to annienell]

Thanks Annie I will ring them on monday

[Hidden]

Bronchiectasis is a terminal illness and also comes under the rare illness catergory. You should apply to go on long term incapacity benefits or whatever it is called these days. I finally gave up fighting my illness Alpha1 in 2008 and applied for the long term incap: I took my gp's sicknote and my consultants reports laid them on the interviewers desk and answered a few questions about my worst days oh and I made sure I was using my o2 that day.

I also have people frown at me when they see me parking in a disabled bay because I look well but they don't know the half of it. So don't let that get to you.

Has for Disabled Living Allowance it is not means tested and you should have applied for that when you were diagnosed with Bronchiectasis and started struggling. But you cannot get it back dated so that is a loss you will have to bare, but apply for it asap even if you are working.

Also you should never worry about all this talk on going for interviews to prove you are unwell. I have had the odd letter here and there and each time they say I may need to go and see one of their officers and be interviewed. I send back a reply saying that I need a disabled carpark space close by and if the office is not on the ground floor then there as to be a lift because I cannot do stairs and if the weather is damp or windy there is a strong possibility that I may cancell at short notice. I also send them a A4 envelope filled with all my consultants past reports .

I put the ball in their court and let them sort it all out so I do not have any worry or pressure.

Nobody ever gets back to me and I always recieved my benefits on time.

Good luck

[Hidden in reply to Hidden]

Hello dnamisshap! Can I just say, bronchiectasis most definitely isn't a terminal illness, I don't know where you got that idea from. It's a chronic illness but is very treatable. It isn't really rare either, but historically has been woefully under-diagnosed. Thanks to improvements in medical education, that's now changing.

Also, it's not possible to apply for Disabled Living Allowance anymore, as it has been replaced by Personal Independence Payment

I hope you don't mind me mentioning these points, but I wouldn't want poshpilly to get wrong information

[Hidden in reply to Hidden]

You maybe right about it not being a terminal illness, but it cannot be cured

I only go by the 2 friends I know one is still alive but needed a double lung transplant because of Alpha1 and Bronchiectasis he was managing his A1AD like myself until he also got Bronchiectasis and that was to much for his already weak lungs he needed o2 24/7, needed the use of a wheelchair and was producing mucus by the cup load, but even then it was not cured because as you know it originates from the airways and they don't transplant the tubes but he is out and about now walking everywhere got a job and uses the gym most days. His new lungs are coping well with the mucus.

My other friends sadly passed he also had A1AD so perhaps its not such a killer like you say providing you don't have weak lungs in the first place.

Has for me saying DLA instead of this new name they have given it PIP well I have been claiming this since 2006 to me it is still disability living allowance.

I hate change..

[Hidden in reply to Hidden]

I'm really sorry about your friends, Hidden , but my concern is the same as inhaler1 A newly-diagnosed person with bronchiectasis could be very frightened to see it described as a terminal illness. It's no more terminal than is asthma, or diabetes, or epilepsy. Some people do, sadly, die of those conditions, but that doesn't make them terminal, even if they're not curable. I hope you don't mind me pressing this point, but I think it's very important to be careful with the terminology we use so as not to cause unnecessary alarm.

[clematis5932 in reply to Hidden]

Thank you very much Hanne 62 for your replies regarding bronchiectasis, you speak for a lot of us I certainly do not consider myself as terminal.

[steveeboy21 in reply to Hidden]

Can I ask what is Alpha 1

[inhaler1 in reply to Hidden]

Sorry, but I do not think this is a terminal illness, there are people on the site who have had Bronchiectasis since babyhood due mainly to whooping cough Many are now over 70 and still going strong, I am 62' and hope I am not terminal to be classed as terminal Dr has to prove you can only have a certain amount of time to live. We are all terminal as we all have to die somtime but I certainly don't want to go just yet, as my illness has been well controlled.

Sorry I had o reply but your answer could worry a lot of people.

[poshpilly in reply to Hidden]

Thank you for your kind words it's really appreciated!!

I will follow what you have said re appointments etc as so far I've found it all very stressful!!

No one believes how I'm feeling as I look"normal"

Do you ever get stressed and a bit forgetful which doesn't help keeping a job at all. I'm at the stage now where no one keeps me in a job and I feel I'm forgetting every thing and struggle to stand all day !

I also have scollosis of my spine which also very painful.

If I stop work is it enough to live on? I'm applying for pip but not heard anything

Before all you get is jobseekers but it's not enough to live on and I'm not fit to work now

Will the GP sign me off long term do you think?

Poshpillu

[Why19 in reply to poshpilly]

Did you end up giving up work?

[moodygirl]

Dear dnamisshap

No there is no cure but it can be managed. I've had it since childhood; I'm 66 now and live a normal life. I worked full time until I could retire at 61. I might not have the lung capacity of a healthy person but I play golf three times a week.

Please don't worry people unnecessarily without knowing the facts.

[Hidden]

Dear all yes I may have made a mistake by saying it was a terminal illness.

After all the only two people I have had aquaintance with that have had this illness have obviously had it more severe than you all, perhaps on top of emphysema it becomes more severe that you have it.

I suppose there are people like yourself that are living proof that this illness can be managed easily with meds but in my defence I have never met any of them.

So I appologise to Posh Philly for alarming her (if I did because I never meant to.)

Obviously infuture (now I know the facts) when some one says they have Bronchiectasis I will assume that all they need to remedy this is a couple of tablets or inhalers.

[poshpilly in reply to Hidden]

Don't worry as I know it's not terminal, I've been reading about bronchiectasis for years. The problem is I've never been managed in 15 years, which I assume has made my health worse. I got the sack again yesterday for being sick and coughing and tiredness

[Why19 in reply to Hidden]

A couple of tablets and inhalers?!

I would suggest that maybe it would be better for you to not comment on things that you do not have good knowledge, or 1st hand experience of really

[Hidden]

Thanks for that poshpilly but I am sorry to read that you were sacked over health problems .

I thought there were laws against that .

I know in 2008 I was moved from a night security officers job because they were going to demolish Hampton House on the Albert Embankment it was a one man job. They moved me to a day security officers job at Millbank Tower after I had been there a week I was informed by the building manager that I will be expected to use the stairwell on patrols, there are 33 floors in the Tower and I told my boss I could not do that he said that there was no other openings so I left and took redundancy.Because I was under so much pressure and became depressed for a few years I never realised that I could have had them for Constructive Dismissal.

Good luck in whatever you plan to do now.