Let down by services

[Marcel-wave]

I have recently discovered I have COPD and have had it for 18 months . Practise nurse informed me when I went feeling so ill tired cough etc. I am upset as feel should have been told before when I have been to see Dr when cough has been awful. Any ideas what I should do about this regarding my Gp handling of this .Any information greatly appreciated .

[Toci]

Hi, it's terrible isn't it? I also found out from a nurse who told me I had been diagnosed with COPD 'ages ago'. I had been for a lung xray and the hospital had informed the GP of emphysema and it had gone in my records but nobody told me. I complained and was told I was told and must have forgotten. As if I would forget! I did not even know what COPD was! But, coming on here, I learned a lot. If your GPs are usually good then you can help by knowing as much as you can so that you can monitor your treatment. If they are not very good you have the option of changing GPs. Either way, ask for a referral to your local hospital to be seen by a lung consultant. Good luck.

[sassy59]

Doctors do need to learn that patients are actually entitled to know what is wrong with them as early as possible. Not good practice otherwise.

I hope you can get to the bottom of it all and wishing you well. Xxxx

[Greatbanks in reply to sassy59]

I agree but sadly as this lady was never informed properly first told its asthma then COPD and bronchitis suffered for years with bad chests I'm now 57 yrs old and still have to rely on these type of web sites to learn anything about condition ! Most GP's don't have enough knowledge on subject u only see specialist now and then cut backs I guess

[Mandy6513]

Like you and Toci i wasn't told until months later when i was taken into hospital and the staff there told me because it was on my notes. My sister was with me at the time and said "i didn't know you had COPD , why didn't you tell me ?" well thats because i was not told !!!

I did ask for a letter explaining why i had not been given this information and also like Toci they said they had told me !!! I would certainly have remembered that as i clearly remember the nurse telling me my results where fine from the spirometry test. To say i was angry and upset was an understatement and i did consider suing them .

Ive lost all my faith in my surgery now and rarely go there but go to see my consultant instead because she is fabulous and the only person i trust if im honest

[rogerw117]

Many years ago when first diagnosed, my GP said that people are often told it's asthma as "that's kinder" (asthma being reversible, COPD not).

[O2Trees in reply to rogerw117]

That's really irresponsible - and somewhat patronising.

[rogerw117 in reply to O2Trees]

Indeed!

[Greatbanks in reply to rogerw117]

Kinder ha not really I wish I was told sooner it's a cop out on there part , my uncle had Cancer getting on in years and he didn't want to know about that told them this but told they have to inform patients now "really " lol ? It was horrid they just blurted it out to him no regard and walked away ! There is no continuity with what we are told ! I had one GP grumpy sod gone see him with bad chest again and depression not been clear of bad chest for months told me go home coz ( I was smoking at that point ) told me another chest infection not make it to Xmas this was last year I think ? He was never wrong I was mortified 😟😤 sure was depressed after that , to go from not knowing to nasty GP who had had a bad day talk to me like that not good . I'm angry that I was not told sooner or even had things explained GPs are a rule to themselves .

[Marcel-wave]

Thank you everyone for feedback, so sad we have been let down.Feel like taking this further any ideas please ?

[rogerw117 in reply to Marcel-wave]

Effectively, you've been denied the right treatment for 18 months. Complain. which.co.uk/consumer-rights... . I've reluctantly reached the conclusion that there are a lot of GPs out there who aren't that good. I'm much happier seeing the nurses in my local Respiratory Team than I am seeing most of the GPs at my local practice.

[Marcel-wave in reply to rogerw117]

Thank you for link .Hope it helps this happenings to someone else .

[Scottiedottie]

Feel sorry you weren't told but would it have made any difference to your treatment?

[Marcel-wave in reply to Scottiedottie]

Yes surely treatment would have been given sooner. Result would have I could have stayed healthier and taken some measures to help myself .

[Greatbanks in reply to Marcel-wave]

I agree feel the same if I was informed sooner could of made sure I was healthier ect no idea of what was going on . In 70's most families had smokers in them mine had mum dad and 2 uncles that lived with us ! No warning on cig packets the government pushed them knowing addictive to boost revenue at time now treated as lepers & burden to health system resources yet it was government who in initially played a part in encouraging the public to smoke back in the day ! It's so annoying also smokers paid national insurance to cover health h care to they forget this , sorry rant over .

[Carnival567]

I utterly agree with you. I found out last week that I had COPD as well as bronchiectasis. I was diagnosed with bronchiectasis 4 years ago and letter to GP also said chronic obstructive airways disease but I just thought that it referred to bronchiectasis. New GP mentioned it and was surprised I didn't know. Probably caused by parents heavy smoking as I have never smoked. Also had echocardiogram and sonographer commented on enlarged right heart probably caused by pulmonary hypertension. What fun it all is. Wonder if I shall be called back by cardiologist. See resp consultant in 3 weeks. I do wish they would all talk to us properly and explain things, it all seems that they keep secrets from us and are surprised when we get upset.

[Marcel-wave in reply to Carnival567]

Oh so sorry to hear this . This should never be allowed to happen .

[Pietba in reply to Carnival567]

Hey they kept me in the dark as well for quite a while till I had to go for a big operation. However do not blame your parents for 2 reasons. 1) Way back nobody knew that smoking will cause this and my Dr says that nowadays at least 30 to 35% of people that gets it never smoked. 2) We did not know about co2, fumes of spray painting, asbestos, diesel fumes, paints that we previously used and insecticides all of which can cause Emphysema. My mom had it - she never smoked nor did anyone one in her family. She was on oxygen the last 2 years of her life and passed away at 83 due to heart failure.

Life happens and we must make the most of any situation I discovered after my diagnosis - it was a process to get where I am now. Denial, anger, blaming yourself depression and then acceptance. I live life to the fullest now and got a huge sign on the back of my Nissan Patrol - Everyone must die - Some people never lived.

God Bless all you good people

[Carnival567 in reply to Pietba]

I don't blame my parents at all. It is as it is, but I would like doctors to explain more.

[Greatbanks in reply to Pietba]

Hi that's a great attitude not blaming parents just think we had right to know what we have .

[Greatbanks in reply to Greatbanks]

Ditto

[Greatbanks in reply to Carnival567]

Ditto same as you

[katieoxo60]

Sorry to hear you are another one who feels let down by their doctor. This has happened to me on many occassions, so understand how you feel. I have even been through the system to address these things but it only makes you more unhappy. I have just had a similar experience in the last month, so don't know what to suggest you do.COPD is generally treated/managed at the local GP practice nowadays unless it is severe or flares up. You do need a doctor who is open with you like the nurse. Take care and I wish you every best wish in getting your illness managed correctly.

[Marcel-wave in reply to katieoxo60]

Thanks. I am sorry this is going to happen to again .

[Carnival567 in reply to katieoxo60]

I think my new GP is very good as was my last. I think the problem was with the consultant, he was Czech and very pleasant in many ways, but I suspect that his different culture was more of this is it. He never asked how I was and I had to tell him of my heart condition, but the actual treatment he gave me was spot on.

[Hidden]

I had a persistent cough two years ago which my gp just said it wasn't my chest-listening-no xray-but not consider anything else.in end was put down to acid reflux.my cough has now returned.practice nurses are better at diagnosing than gp's-who seem to put everything down to mental/psychological issues.

never had a chest xray until last week by endo-not had results yet

[katieoxo60 in reply to Hidden]

Oh how I agree with you.

[hufferpuffer]

I am not surprised you are feeling let down, my local surgery is atrocious. These days we all need to take responsibility for looking after our own health because they certainly aren't worried! This is a great site for advice on your ailments , I've learnt a lot from folk here who understand and that counts for such a lot. Make sure you get your Flu shot ask to be referred to a Consultant and please get your name down for Pulmonary Rehab it's not just about exercise, you'll learn a lot about keeping as well as possible, huff xxx

[Hidden in reply to hufferpuffer]

i totally agree huffer puffer.been to my the gp 5 times since june with various problems -2 serious -and not one of them taken seriously-not even an acknowledgement.he didnt even feel my head for swelling.

[Greatbanks in reply to hufferpuffer]

I've not been rehab thing asked to go but always seem to get another infection b4 go !

[Hidden]

Hufferpuffer is right. Flu can be, and frequently is, fatal to someone with significant lung illness. It can also lead to pneumonia and permanent lung damage. You may choose to ignore NHS advice but most of us would not take that risk.

[hufferpuffer in reply to Hidden]

I haven't had the flu since I've been having the jab, over a decade... had the Pneumonia shot as well but my daughter who suffers from Asthma has stopped getting her flu jab because of something she read.😕I think pollution is more of a danger than what's in a flu jab.

[Hidden in reply to hufferpuffer]

Oh dear that's not wise, if her asthma's bad. There are websites like the mercola.com one, full of alarmist stuff & conspiracy theories, with the aim of selling his own products to gullible people. I doubt the NHS would spend £millions on something to poison us, what would be the point?

[Hidden in reply to Hidden]

I agree with you and huff completely. I can't understand why the medical profession would want to cause us damage or even death. Doctors aren't perfect but it would take a paranoid mind to think they deliberately cause us harm! x

[O2Trees in reply to Hidden]

Agree Cough and Hanne x

[Nottobad in reply to hufferpuffer]

I agree with you all. It would be interesting to know we're your daughter got this information from huff. The flu jag is a must for someone with lung problems. Hope your daughter is okay with not having the flu jag . X

[robdonn]

I am really pleased to be one of the ones who was tested and told asap. I have had asthma for nearly 30 years and was a smoker. My Drs surgery done the relevant tests with xray, spirometery etc and now am on medication. Have been through the worst part of depression and on the way up the other side now, I think there is always something or someone that can be blamed but it wont change it so I personally think its not worth blaming anything. I wish all medical staff would explain things to their patients clearly. I have been lucky that mine has been really good. Take care, I personally have learnt a lot from this website and thank everyone for that

[velvet55]

Hello Chris

If you have a serious chronic lung Disease and you come into contact with influenza your salt pipe is going to be absolutely useless at preventing you from catching it....and it will be useless at helping you survive influenza.

A flu jab is Vital.

[Hidden]

Doctors have a duty of care to inform you if there is something wrong with you. You should have been told. x

[Hidden in reply to Hidden]

I agree but they always cover their own backside don't they. I remember having this 'argument' with the practice manager who said there was no record of some things I said to my doctors, eg I said I had asked to be referred to a consultant at least twice in the past but there was nothing in my records. Either she was lying or the doctor didn't put it in my notes. I decided that next time I go I will make sure everything I say is noted and I will keep my own records.

Having said that I understand doctors are under increasingly enormous pressure these days with the NHS changes and they are run off their feet. I know they get very well paid but it must be a very stressful job and I wouldn't like to do it. x

[Jublianna]

I think maybe now you have a diagnosis make sure they keep on top of it and you get the right medication, possibly a referral. It has taken nearly 10 years for my diagnosis it's asthma then it's COPD I have recently had the works bloods heart scans CT scans more lung function tests and its COPD its the consultants with the answers. Good luck

[Hidden]

I work in a GP surgery and it is a really really busy surgery. I make appointments, do prescription, liaise with chemists, hospitals, GP's, district nurses,care homes that our patients are in, plus admin work and am paid £7.50 an hour. It's hard work and patients can be very demanding. Every time a patient visits the surgery it's documented and Dr's have a duty of care. They cannot keep illnesses from you. If they have, I should think you can take it further if you wished. If your GP referred you to a specialist though, he has transfered your care to the specialists and its down to the specialist to inform you as you are now under his care for that particular illness. Every surgery is different some are run better than others. I'm not a patient in the surgery I work in. I had to wait for an hour outside in the rain, in a queue for my surgery to open while I had pneumonia. I would not have been guaranteed an appt otherwise. It's first come, first served. 😩 I will be changing surgeries. x

[Marcel-wave]

You have all been so helpful can not thank you enough xx

[Jans1964]

I think there is another issue with this - I have also been diagnosed with mild emphysema recently, but having also got copies of my GP notes it seems I've had this for years and not been made aware. During that time I have happily told my travel insurance company I have mild asthma, so if I'd had to make a claim I would not have been insured as that was not accurate!

[Greatbanks in reply to Jans1964]

Your right never thought of that ! It's a knock on effect thanks for pointing that out .

[Marcel-wave]

I have just had a print out from my nurse of the result of my x ray in May 2015 saying I have COPD and my GP has written Tell Clear ! Nightmare 😬