Hi All
Wondering if anyone can help. I have been diagnosed with Asbestosis and COPD (in a bit of a mess). DHSS are telling me I am 10% disabled. I know I am worse than that given what I can no longer do. My last SPIROMETRY results were FEV1?FVC 42.23% = Sever. Would anyone know what % of lung capacity I now have and how that is worked out.
I can tell you is disgrace how they calculated disability.
I guess from Medieval % rate it’s done via Iidb
As two lung volumes they will be two issues at play ONE being heart that is conveniently not accounted for AND lesser lung that is.
Is a disgrace really WHAT adovacte’s let go on especially these days
Hi Jeff
I can see where you are coming from, after my diagnosis I had two hart attacks. Was fitted with 3 stents and am working sort of well now.
Hi Jeff; persevere!
I have pleural thickening, caused by short term exposure to asbestos cement dust in 1969 and have a spirometry count around 30-35%. I use portable oxygen (2 litre flow), and also overnight through a face mask and sleep apnea monitor. If I don't use portable oxygen my blood oxy count quickly drops to 80% or less; with it I'm usually around 95-98% and am able to get around quite well, and still able to drive. Luckily we live by the seaside on the Menai Straits, so our air quality is excellent.
I hope you start to get the excellent support which I have had from Bangor hospital here in North Wales; very thorough exploration of my condition (CT, MRI, chamber, lung samples, etc.), considerate clinic staff, and an occasional call from a mobile nurse to take blood samples from my ear lobes. They also allowed me 8 weeks access to a lung gym, which gave me great confidence after the diagnosis. I also get excellent help from my local oxy supplier, Baywater, who deliver cylinders weekly, and other spares as needed.
We've have sold our large Victorian home and garden - too much work - and moved into a retirement apartment 2 miles away, which provides stress-free living.
Sad to need all this, but I am highly delighted with the service and help I have been given.
Drop me a note if I can be of further help
Geoff (the PROPER way to spell it!)
Hi Jeff , one of your favourite subjects again Asbestosis. Good to see theres still some fight left in you besides your heart attacks and caring for relatives. Theres a new approach to NHS care now you can only be treated for one illness at a time even though your disability severity may be the result of more than one illness and therefore more severe than the results of one illness test. Hope you get through the storm without any drastic harm to you,your family or your home.
Hi Katie am not surprised really BUT since when as out like that stoped me.
Have decided am going to ask my lungs doctor about he’s conscience and plaura plaques scam AND dose he not have conscience.
Then I think am going to ask about how many Alzheimer’s Dementia patients has he treated for lung disease asbestos or none asbestos related.
ALL probably get discharged but at least I made him think about he’s conscience
"You can only be treated for one illness at a time". That is nonsense.
That's the impression I get when I go to the hospital or GPs. In fact he told me how many times I had been in a certain period amounting to a grand total of 80 mins for more than one illness and a new one too, plus prescription incorrect prescribing to rectify.
Each time you go to GP you have 10 mins. maximum and can raise one major issue and 2 minor issues. If you have further issues you wish to discuss then more appointments. That is to ensure that appointments do not overlap with others waiting to see the GP. I am being treated for 7 different issues but could not expect to raise them all in one appointment.
I appreciate what you are saying , and some larger practices can give back to back appointments if the matter is more difficult. In my case as a registered disabled person I have more than one illness needing ongoing treatment and management, the nurse deals with lungs, doctors deal with other things like blood pressure, joints and none ongoing unforseen illness . The doctor also has to deal with physio, hospital referrals ect so like you I may need to see the GP far more than another patient. At present I am having walking difficulties while waiting for a major op so my doctor does telephone calls and chemist delivers prescriptions. However I very rarely have to attend hospital clinics last year being the exception, due to accident a deterrioration in Arthritic joints, plus reaction to a changed inhaler. Everyone is different and we all have flares in our illnesses that cause need for extra doctors appointments. GP appointments have to be available with only time restrictions as hospital clinics take so long to materialise and there will always be times when we have to wait longer than we would like for a surgery appointment.Thats why I feel there should be more community services for chronic illness monitoring, a bit like mum & baby clinics.
I did not suggest back to back appointments. That is not fair on other patients who have issues just as important. Further appointments are on other days.
Anyway I think we will never agree on this so I make no further comments.
Yes it is nonsense. I am seen and treated in 3 hospital clinics, Oncology, Cardiology and Respiratory. Granted not simultaneously, that would be rather difficult to be in three different places at the same time.
I only ever see my GP to get a new rescue pack when needed, perhaps once a year and for a medicine review once a year. Plus a one off for a check-up 2 weeks after having Pneumonia and of course my very first appointment, to get a referral to the respiratory Clinic.
Do you know you can make a claim against the companies involved in you being exposed to asbestos.
Hi Kippy when I was diagnosed with advanced pulmonary fibrosis, "probably"related to asbestos exposure, I was told I also could claim against the companies, unfortunately most of them are no longer in existence. However I would rather a healthy set of lungs than the money. I only have months to live, according to my specialist.
I am making the most of my time in the here and now.
I wish everyone with a lung disease, a speedy recovery if possible.
Take Great care and may God bless you all.
Ernie
Could not agree more Oldspark. Brought myself a new Bike last May then got the Asbestos news on June 14th 2019 not even had chance to ride it yet,
Had a go at that and I am told I do not have enough Asbestos poisoning. Wonder how they work that one out.
It’s scan of plaura plaques THATs what loon doctors in England go off YET Scotland it’s accepted you only suffer plaura plaques after life time occupation history exposure.
Hence why in Scotland you can claim IIDB for lung disease copd as asbestos there is accepted as causing such issues as well as pneumoconiosis.
Anyway I put mp straight as he was deluded thinking Asbestos comp already covers lung disease in England
My claim is with a lawyer at present and my dad managed a claim . Its no hassle up here, the work by the lawyer is done for free, so worth a try. My consultant was the one who told me about it. I wonder how they worked that one out too.
Kippy good to hear yours is going ok.
Where are you and who is your Lawyer ????
I'm in Edinburgh and you go through a charity called Clydebank Action Group, it gets passed to Thomsons Solicitors. This is who is dealing with my claim.
You can Google FEV and %
Sorry mate clicked off too soon, I started riding motorbikes back when I was 15 now 73/74, gave up about 4/5 years ago, but still have an interest. I now concentrate on my model railway, as a way of therapy? It helps with my breathing a little by slowing it down and my oxygen demand is also lower, a bit like yoga?
Take care.
Ernie
Sounds good, I started riding at the age of 4 1965 so quite a while ago. Have had lots of bikes over the years but my latest is a Harley Davidson Super Glide 1450. Year 2003 with only 1628 miles on it, it's like brand new love it. Just got it ready to give to my son for his birthday. After COPD/Asbestosis and two hart attacks I have lost a bit of confidence so stopped riding just building now.
Many people that assess disability have no idea of the effects of illness . i.e some people who are quite ill often still lead a normalish life till it starts to deteriorate.Disability is really how the illness affects your ability to do daily tasks. examples: breathlessness when bending, lifting heavy things, running, showering, dressing. If you have more than one illness then this could be twice as bad for instance. Or if you have a disability as well as illness. Other factor is your illness being made worse by activities, as in the pain of arthritis ect. Its not simply that a breathing result defines disabled or not it is merely a guide to how it is today and routine checks help the medics to know if your illness is getting worse. Of course figures of a certain level define the severity of illness and whether it requires specific treatment.
That Fev1/FVC you posted means you can forcibly blow out 42% of your total lung capacity in 1 second(Fev1 = Forced expiry volume in 1 second; FVC= Forced Vital Capacity from a full inspiration). c.70% would be considered 'in the normal range'.
I've got copd, had heart attack and pneumonia twice but I've got to praise my gp surgery in helping me through this, ive also got severe arthritis and taking about 12 different tablets a day but when I go to them about respiratory tests I'm in for about 40 mins because we have a respiratory nurse so you get more time and she is brilliant.
What benefit are you claiming, if you are over 65 then you should be claiming the disability living allowance on top of your state pension. DLA is not based upon a mobility assessment, however if you are under 65 and claiming PIP you need to appeal against the decision. Look at the British Lung Foundation website for info
Very young 58 with 5 kids 16 grand kids and 12 great grand kids Love them all. Yes I do clam DLA but only got 10% I am going to tribunal in March with lots of medical evidence and so on. I was just wondering if any one had been through the same as me with regard to DWP and if so how did it go.
My father had to appeal and won. I'm suprised about the DLA as there are 2 standard rates, higher and lower, which you either get or you don't and which are paid to those over 65 receiving a pension. Anyone of working age should be assessed for PIP, I'd check that out
Because I have Asbestosis and COPD I get DLA it is the amount of DLA I am getting that I am appealing against currently 10% works out at 5% Asbestosis and 5% COPD . When you consider what I can no longer do 10% is very low also my test results say my condition's are sever. Yes some days are worse than others but on the whole I am down around 40/60 % so the DLA is very low. I was so ill on the day of my assessment I went on to have a hart attack two days later. So not having a very good time of it at the moment.
But I am still smiling and alive.
Hi. I suffered from copd and struggled but my consultant completed all the forms for DHSS and less than a month later I received benefits. I had been suffering for a long time before I realised financial help was available. Good luck.
Have read your message and other replies with interest. I was diagnosed with mesothelioma, cancer of the lining of the lungs due to exposure to asbestos, fifteen months ago, and at that time only given six months and here I am still! I was 68 years old and now looking to my 70th in a months time! I was also diagnosed with mild emphysema at that time as well.
I must admit I was given the best treatment possible in North Devon and Cornwall where I was staying with my daughters at the time so have no grumbles there but I am angry now at the the prognosis I was given by the oncologist I saw after diagnosis. Given six months, I saw no reason to chase up blame which would have just been wasting precious time I had been led to believe was all I had even though I was offered this by his team. I suspect this was part of their remit to offer this service even if nothing ever came of it. To me, a waste of time!
I have a pleurex drain which my husband does approx twice a week and took over the duty of, a year ago, from the community nurses. They just supply the bottles and dressing packs. Everyone involved seems to be astounded that I am still alive and kicking and keep offering me the services of the local hospice! Very kind but not for me. I have spent fourteen months wasting my time playing games on my kindle, frightened to put myself out there and almost becoming a recluse except for spending time with my children and grandchildren, but at the same time not giving into this prognosis. I have recently just returned to and picked up my business and resumed my previous life because if I hadn't I was about to give up out of sheer boredom and the futility of what was 'so called ' my life sentence! If I died tomorrow now, I would at least know I tried to come back in spite of what was handed to me! Just a bit too late!
The GP I have now was angered that I was given this time limit and is of the opinion that doctors have no right to give this kind of information because everyone is different and shouldn't generalise. Given my experience I am inclined to agree. Not everyone would I know! This was also unfair to my family especially my children who tried to prepare themselves of the inevitable outcome and give me the best year, so last year was a 'year of lasts' that has now progressed into a second year of lasts!!! They are in fear of planning anything because of this and this now fills me with guilt because I am living longer than expected. Rediculously it puts so much pressure on everyone.
My experience has taught me if nothing else, is follow your gut feeling, do what is right for you at any given time. Chase up the figures you are questioning with the people who should be able to give you the information you need and have an obligation to give you that information. If you dont understand then question!
My very best wishes go with you
Regards Ann
Copd meds 
COPD struggle
Bronchiectasis/COPD
copd sucks 
