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COPD diagnosis: Carenity members tell their story

Published 11 Mar 2019 • Updated 17 Jan 2020 • By Josephine O'Brien

Carenity members tell us about their long journey before they got a diagnosis for chronic obstructive pulmonary disease.

COPD diagnosis: Carenity members tell their story

Our members affected by chronic obstructive pulmonary disease (COPD) have told the story of their diagnosis! Symptoms, emotions, examinations, relationships with their doctors.

Carenity survey of 115 COPD patients in the United Kingdom. 

diagnostic-cancer
On average, patients waited 2 years to be diagnosed and the majority consulted 2 doctors before reaching their diagnosis.

The journey to being diagnosed with COPD can be long, with the average journey to diagnosis being 2 years after showing symptoms. During this period, respondents said that they experienced different symptoms. These ranged from different severities but the majority of patients complained of the following:

Breathlessness | Chronic cough  | Wheeziness | Chest infections | Asthma| Tight chest | Pneumonia | Fatigue| Lazy eye | Loss of voice

Before the diagnosis: the impact of COPD

We asked our members what aspects of their daily life had been affected by these symptoms caused by COPD?

loisirs-cancer Hobbies and activities - 80%

vie-intime-cancer Love life - 63%

fatigue-chronique Chronic fatigue - 57%

vie-sociale-cancer Social life - 56%

vie-familiale-cancer Family life - 49%

impact-cancer-vie-pro Professional life - 40%

douleurs-cancer Chronic pain - 20%

The majority of respondents reported that their hobbies and activities was the biggest impact on their daily life before the diagnosis, followed by their love lives. Luckily for COPD patients, chronic pain was the least reported symptom. 

Before diagnosis, only 16% of patients did their own research on the Internet concerning their symptoms and they reported using websites such as the NHS and just inserting symptoms into Google. However, several respondents sought advice from loved ones who were in the healthcare profession or they had family members who were previously diagnosed with COPD and they recognised the symptoms.

Respondents to our survey are not very interested in trying alternative medicines for their COPD, with only 14% having responded positively. However, those who did try alternative therapies used homeopathyacupunctureChinese medicineinhalersreiki and meditation.

Being diagnosed with COPD: what you had to say

For many diseases, the road to be diagnosed is hindered with misdiagnosis. However, with COPD, only 21% of patients experienced a misdiagnosis before concluding they had COPD.

According to Carenity members, they were most frequently misdiagnosed with having asthma, stress, brittle asthma, bronchitis, respiratory allergies, emphysema and infections.  

The shock of the diagnosis  

For some people after years of searching for a diagnosis and not being able to properly label their condition, being diagnosed came a massive relief. For others, it was a shock and a traumatic event. How did Carenity patients react to their diagnosis?

choc-annonce-cancer It wasn’t a shock, I was expecting it - 34%

diagnostic-cancer-reaction It was a relief - 21%

soulagement-cancerI didn’t feel anything in particular - 19%

choc-annonce-cancer It was brutal - 17%

peur-cancerIt was horrifying - 12%

Finding out that you have COPD can be a frightening event but surprisingly, 34% said they were expecting it while 9% of patients can’t remember how they felt at all. Fortunately, most members felt relieved and not particularly traumatised by the diagnosis.

The role of doctors and healthcare professionals

The role of the healthcare professional making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. The good news is that the majority of Carenity members felt that their doctor took their time telling about their diagnosis whilst also being calm and emphatic. The main problem members found with their doctor was the feeling that they didn’t care and they were cold and distant delivering the diagnosis. However, the positives far outweighed the negatives for COPD and their healthcare providers.

 One member said, "They explained what medication I would be taking and I felt reassured" while another echoed this sentiment with, “I was really too ill at the time to worry, but my doctor was brilliant at explaining and helping me”.

Another member mentioned the lack of being formally told they had COPD and they learned about their diagnosis through reading the “receptionist’s screen” but thankfully, the bulk of respondents reported good things about receiving their diagnosis, such as “My GP was considerate and caring” and “I found my doctor very skilled at giving the diagnosis”.

The following statistics show how members felt their doctors handled the situation of relaying their diagnosis to them:

le médecin 

54%The doctor took the time to explain

47%The doctor was very calm

31%The doctor was very emphatic 

9%The doctor offered offered psychological support

ressenti négatif

10% They were cold and distant

8%  They looked like they didn’t care 

6%    -  They used cold and scientific language

3%    -  They were too fast explaining

The patient's struggle when facing COPD

We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now they had a name for their condition or despair for their future medical journey. Many members responded having felt several emotions at once and this is what they had to say:

53% of patients felt relieved by the diagnosis but this was coupled with 41% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise, according to 20% of respondents. 11% reported feeling lost, confused and alone, 10% felt anger about their diagnosis, 10% of patients had the sensation of being misunderstood whilst only 10% felt discouraged. 

Unfortunately, only 27% felt determined to fight the disease and 11% had confidence for the future while 5% felt despair. 

How can diagnosing COPD be improved?

The above statistics demonstrate that many patients feel very relieved after receiving their diagnosis, even if this feeling of relief is also coupled with the anxiety, stress and feeling of uncertainty that partners with most chronic illness diagnoses. Carenity members were mostly happy with their doctor and how they received their diagnosis, but we asked them how they think the process could be improved and this is what they said.

Several members expressed that they had no problem with their doctor’s bedside manner, but they felt anger, confusion and frustration about how long the journey to being diagnosed was:

It was okay. I was just angry at having being misdiagnosed in the first place” They felt they suffered for longer than necessary because of this delay in being diagnosed, “The amount of time I suffered before being diagnosed”.

More support and information

The most resounding call for improvement concerning the diagnosis of COPD was the lack of explanation about the future and medication. Although the bulk of members were satisfied with their doctors, there was a resounding call from members for, “Further explanation would have been a great help”, “should be given more information” and “The fullest explanation should have been given and the progression of the disease anticipated”.

Many patients wanted more information about the time scale of the disease and what patients can expect as their disease advances, “Even after I found out more about the disease no one talked about the time scale.”

Others mentioned that they fully regret smoking and wish they had been warned about the dangers of COPD, not just lung cancer, “I think people should be made much more aware about COPD especially smokers.”

In brief

To conclude, it appears that most members were happy with their doctor’s support during diagnosis but more information and support should be offered after the diagnosis, concerning alternative therapies, disease development and management.

And what is your story?
Let's share our experiences and that of our loved ones in the comments on this article to improve diagnosis and help raise awareness of COPD!

Carenity

avatar Josephine O'Brien

Author: Josephine O'Brien, Community Manager UK

Josephine is the Community Manager of the UK with a Master’s in Publishing. She is a strong believer in the power of words and strives to make Carenity UK a comforting, vibrant and informative community for both... >> Learn more

13 comments


Scotty 2
on 22/03/2019

I can not believe how many people just accept their diagnosis and do nothing to help themselves. I have been fighting this disease for over 20 years. Yes it makes you tired and often depressed. You get frustrated because you can not do the things you want, but that is no excuse to just give up. I have just finished a 6 week NHS rehabilitation course and it improved my stamina. If you are willing to help yourself people in the health service will help too.


Suliju
on 02/04/2019

The NHS rehab course is brilliant - I only wish they would make provision to attend annually - top up needed!


TrudyE
on 20/04/2019

I received my diagnosis the first time I went to the doctors. It was an emergency appointment and I saw the nurse. She listened to my chest and said she suspected copd. She gave me antibiotics and steroids, arranged for me to have some breathing test. Went back to see her a month later and she said it was copd. Gave me a inhaler and talked a bit about it, not a lot though. I went home and looked it up on the internet. Each month I went back to see her, she gave me another inhaler and told me to do gentle exercises. 


TrudyE
on 20/04/2019

I am on 3 inhalers at the moment, I’m not seeing the nurse at the moment because I have just been diagnosed with lung cancer. The nurse told me she would see me again after my cancer doctors had finished with me.


happyhippygirl
on 05/06/2019

I never new I had it,I have astma,and AF,about 5 years ago New Year's Eve,I hadent been well week before,went to Doctors,he gave me steroids antebiotics,but it did not help,my AF was playing up,pulpertaions,so my daughter rang for amburlance,when the came did some test,my heart was beating fast,rushed me to AE,gave me injection to get my heart beat,to slow down,had a nasty cought to,told my Daughter they was keeping me in for the night,see how I went,got worse of cause ,X-rays etc,week later in Hospital,gave me somethink to sleep,when the young doctor came round told me I could go home now,she also said I had ( can not spell it try my best ) umonea,the sister could no belive I was sent home with that,I stayed in bed at home,felt week could hardley eat ,on the form it said I also have COPD,no one told use had to read it,was not well for 3 months,Now I have a Enmergency pack at home of steroids and anitbiotics,3 weeks ago I took these has I had a chest infection,got another pack,went on Hoilday still had it took the pack,I still have a bad cought bring stuff up,rang for another pack which will be picked up tomorrow,I won't take it again just hope this cought will go on its own,sometimes when I cought I can not get my breath it is very scarey,I do get out breath a lot,if bending down,I get out breath I can not talk,I have to hold on to somethink,to get my breath back,walking up stairs I get out breath,which is a few times aday,has no loo down stairs,ok it excises,sorry went on to much,

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