Breathlessness and early diagnosis – can you help?

Hi guys,

I was wondering whether you could help me with something. The Department of Health are going to be running a campaign on breathlessness. They want to ensure that people don’t wait until it’s too late to get their breathlessness checked by a doctor and have asked for help to find case studies for their awareness materials.

I am looking for stories of someone who went to their GP with breathlessness and this helped them to get an early diagnosis of either COPD or lung cancer. I know this is a tall order as too many people are still incorrectly diagnosed at first, but if you think that your story fits this bill then I would love to hear from you.

Unfortunately time is a bit tight as we need to find someone this week. If you decide to take part then we will only need a paragraph or two about your story and a picture of you. If you would like to know more then please email me on PatientVoice@blf.org.uk.

Thanks for reading!

Bethany

10 Replies

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  • As breathlessness often doesn't make itself apparant until we are around or even well below fev1 50% (ie already severe) it is already 'too late' in terms of impacting our lives. Most people 'picked up on' earlier than that are seeing their GP for a chest infection, pneumonia or are already under their eagle eye for another LTC such as Heart disease or Diabetes. The DoH should be starting a screening process for lung health - it should not be too hard or too difficult to work it into the new NHS health screening that is now to be done routinely from age 40 for just about everything other than lung disease - Heart, Diabetes, Alzheimers, High BP etc. The fact that they are not willing or capable to do this is tanatamount to negligence consideing the availability of pretty reliable, quick use hand held spirometers and pulse ox's. These could be used during the general 'health chek', and if any doubt arises as to the patients results they can then be referred on for full screening - spirometry, chest xray as found nesessary. This would likely pick up not just COPD, but interstitial diseases such as IPF and Sarcoidosis. I have just commented on this issue on another site and posited the question ; "How may of us, now dead, dying or seriously disabled by COPD (or other restrictive/ obstructive diseases) would have been here relatively healthy today, if we had known about our condition when we were 40 - or even 45?

    We have the means and capability to put such early warning screening in place, within Primary Care, right now. Waiting until we are noticeably breathless enough to go and see a GP is like having to wait until after your first heart attack before a a doctor will put a stethoscope to your chest.

  • Thank you so much for your feedback Parvati. Your comments about the majority of people being diagnosed due to a chest infection etc. rather than breathlessness do match my own experience of talking to Breathe Easy members. I had to ask just in case though.

    I think you raise some very interesting points so I will pass your comments on to our contacts at the department of health. Part of the campaign is going to focus on training and education for GPs as well as awareness for the public, so hopefully this will address some of the issues you've mentioned.

  • I totally agree with your response. I have wated a year of my life from being previously referred to a consultant who did no further investigations he gave me an inhaler and tablet montekulast explained nothing to me . Baring in mind my history is four (now five) years of winter being felled with reacurrent chest infections. He saw me first in may gave above then again in aug in nov saw him he said hed discharge me in may!!! Made no arrangements to see me during my worst time. This year i have been ill since beginning dec. I asked gp for second opinion and via her tests i have heart problem ....my point is if the screening existed surely we would be picked up sooner and cost less in long run. I was 44 when my lungs started being naughty eachbyear has been worse than before i am angry i have never smoked and all i wantbis to have my life back all be it with a plan and access to treatment when i need it ...dont think its much to ask . Judith

  • My college was on the top of a hill too, and I would be gasping for breath while my friends walked and chatted

  • Are you interested in people with Pulmonary Fibrosis? Popplewell

  • For this particular piece of work we have been asked to find people who were diagnosed with either COPD or lung cancer. Pulmonary fibrosis is one of our new priority areas though and so we're always looking for case studies to use in our campaigns, literature, press releases and fund raising bids. If you would like to help us with any of these then it would be great to hear from you. You can email me on PatientVoice@blf.org.uk if you like.

  • As a smoker I expected I would be gasping for a cigarette which would change my breathless state I did not expect having breathing problems when I had stopped smoking. A smokers cough was no reason for calling the doctor I already blamed a weak chest and aging for what was happening.

  • now thats going to be tricki

  • Well that me out .. but i will say i noticed in early days that i would be bushed going up stairs

    Example a was carrying a tool box up old victorian house flight of stairs .. and was bushed when i got to the top as could not breath thus had to sit down.

    I just put it down to being out of shape .. then later that year started feeling sleepy all the time when out trying work

    But experts gp's are put it down to panic attacks anxiety

  • Thank you all so much for your replies. We're going to let the DoH know what you've all said as I think it will be valuable for them to see this feedback.

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