I think it’s now widely accepted that self-management is vitally important to being able to live well with a lung condition. From keeping active in your day to day life, to using good inhaler technique, to recognising the symptoms of an exacerbation and what to do about it. And much more besides.
It’s much easier to do this well if you have a good dialogue with your healthcare professionals. That way they can tailor their advice to your needs and you can work out, together, what the best course of action is going to be.
Next week I’m going to a meeting where we will discuss communication between healthcare professionals and patients. We’ll discuss the experiences of both patients and healthcare professionals, and this will be the start of a larger piece of market research looking into this.
I am going to take a couple of people with lung disease with me to the meeting and there will also be some healthcare professionals there. I’d also like to know your thoughts so that I can try to make sure that more of your views can be represented.
What are your experiences of talking to healthcare professionals? You might have examples from:
•When you were first diagnosed
•Your appointments with your GP or consultant
•Conversations with other healthcare professionals, like nurses, pharmacists or physiotherapists
•If you have used leaflets or tools such as our COPD passport to support what you are saying
If you’re happy to share them, I’d love to hear both good and bad examples of the conversations you’ve had.
Thank you so much!
Bethany
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BethanyBateman
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I don't have good dialogue ... I go to doctors suffering antibiotic resistance infection and they say something daft about O it's only a virus you will be ok.
Then it results in A&E job with major copd exabration or how ever it's spelt .. and I am apost to have good dialog WHEN a doctor can't grasp concept of those like us are at risk from a simple viruses
Gp's need to stop listening to TV propaganda and listen more to there patient
Hi Bethany,
I do hope that your post was not aimed solely at those with COPD,which most, sadly are.
I have had bronchiectasis since I was three and am now 65. The only good advice which I have had came from the consultant who saved my life when I was six by teaching my parents how to do my physio to clear my lungs and insisting that I get marched up cliff paths and thrown into swimming pools. I have encountered a tremendous amount of ignorance regarding my condition from GPs. This has ranged from a refusal to accept that I have it through to a willingness to follow consultant's advice, cooperate with me when I ask for antibiotics but very little knowledge of bronchiectasis, how to recognise an exacerbation and how it affects me. I find that there has been such an emphasis on training health professionals in COPD that they either presume that bronchiectasis is the same, which it most definitely is not, or they are not interested and not encouraged to learn more. I always get the impression (sometimes expressed verbally) from my consultants and GPs that the treatment of lung conditions is highly political with COPD getting the big slice at the expense of the others. They are unable to publicly complain about this because they worry about their jobs and career prospects.
I have never had or been offered a respiratory nurse. My experience of hospital nurses has been that they do not like my condition, being repulsed by the sputum. On my last admission earlier this year the doctor requested that I give a sample. All of the nurses refused to take the closed pot, wrongly believing that I could infect them. I had to take the pot and search the wards for the doctor, putting myself at risk of catching the community aquired lung diseases which were being treated there.
For years physios insisted that I should empty my lungs first thing in the morning by lying almost upside down and being heartily beaten on the back. They laughed at me when I told them that in the absence of a person to help me I had developed a system of breathing and 'squeezing' the fluid out. Also that it was no use doing it first thing in the morning as it won't move until around lunchtime. Now we have a breathing routine and 'huffing' to remove the fluid at the time of day which is best for us.
The technicians who carry out my respiratory assessments seem to be better informed as to the condition. Probably because they see the evidence on the computer. However, I was angry and embarrassed at my last assessment. The effort of the test loosened some sputum which I had to cough into a tissue. This can happen often with bronchiectasis and most technicians are cool with it. However, this one snapped 'I hope that isn't infective!'
This seems to be a misconception about bronchiectasis which is beginning to pervade society. A pharmacist came up to me in Tescos and in front of other customers told me that she also had bronchiectasis and as I was taking antibiotics I could infect her. I was mortified and wrote to the manager of the store. I have not had the courtesy of a reply.
So no! My conversations with health professionals on every level have not been satisfactory and I don't see that anything is improving.
I've heard a lot of awful stories about the way people with different lung conditions have been treated. So maybe it shouldn't have, but reading your story has still shocked me. I'm so sorry that you have met with such ignorance and such callous attitudes, time and time again.
To answer your question, no, it's not just people with COPD that I want to hear from. I think all of your experiences are important and can add to the conversation we have next week. Thank you so much for taking the time to share this with me.
Thank you Bethany. Having spent many hours on this site, reading the experiences of others and trying to help those whom I can, I think that you probably have more shocks to come. I can honestly say that some of my best, most informative and supportive conversations have taken place on this site with other members, whatever their lung condition.
I totally agree with your comments Stillstanding, although we are all different and my preferred method of lung clearance is pd wih percussion which I do myself.
I was dx with ncfbe at the age of 5 months old and I am now 67. I have met excellent, good, bad and indiferent consultants during that time, but as SS states knowledge or lack of it re bronchiectasis is patchy and can sometimes be harmful.
Lack of funding and knowledge are a huge probelem.
There has been lots of funding, quite rightly in my opinion for CF and Government money has gone to COPD. We have no wish to dilute their funding but some equality would be fair. It seems to me we are constantly seeing medics and nurses who are well versed in COPD but some know very little about NCFBE. I have been offered Amoxillin 250mgm for 5 days in the past! Then you have to diplomatically deal with that. I am one of the 2% at my surgery and so had a Matron. I say had because she knew very little about bronch and decided that I managed so well, even during the bad times that she decided she would 'phone me. So the better you manage the less support you are likely to get. There are a number of specialist CF nurses in the UK and lots of specialist COPD nurses. I believe you can count on one hand the number of specialist NCFBE nurses.
I forgot a needle and syringe for my last dose of a 28 day cycle. A doc in A & E was going to stay with me whilst I was nebulising an ab. I had to inform him that as there was no filter on my neb it might not be a good idea! When I had finished he asked me if I had to do this every day. I told him before I had done this I had nebulised a bronchodilator, hypertonic saline, done my physio and I actually do it twice a day. As least this was one 'baby doctor' willing to learn, but why aren't they taught this stuff. It is the everyday life of many bronchs.
I find it very exciting the renewed interest in NCFBE, not to mention the funding for research because let's admit we have been the orphans of the respiratory world for decades.
I am hoping general funding will follow. We shouldn't have to waste precious treatment time going through A&E and then onto an assessment ward before we can get the correct treatment on the respiratory ward. Not to mention the cross contamination.
Physio used to be the mainstay treatment whilst in hospital. It seems to be the case now that you might get a 'chat' from a physio, when in fact what you need if your temp is so high you are finding it difficult to do your own, is a little help for a day or two. I was once told by a young physio who was observing (I never have anyone there when I am doing my physio) after asking for a little help with the back, 'that could make you dependant'. Words fail me!
The medics are, quite rightly, trying to deal with prescribing abs in a measured way to the normally 'fit and well'. It is a concern that they appreciate we cannot wait for our MC&S results to come back before starting an ab, which can be changed if the bugs are not sensitive to it, as stated in the guidelines. Personally I would end up in hospital for sure, along with many other bronchs.
Good luck with the meeting Bethany. Perhaps you might be able to let us know how worthwhile the meeting was. It would be interesting to see things from the medics point of view and their reactions to comments.
Thanks for your feedback cofdrop - you raise some really interesting points. You're right, the increased interesting in Bronchiectasis at the moment is really exciting and I hope, as you do, that it will lead to more research and funding in this area.
In the meantime I've put Bronchiectasis on the agenda for all of our healthcare professional study days until June, so hopefully there will be more people out there with an understanding of what you need.
I'll try to write something up after the meeting and let you know how it went.
Stillstanding I am shocked and so sorry you have been treated in this way. One can perhaps expect ignorance from members of the public but medical personnel - never! Keep well, Sheila x
Yes Sheila, a lifetime of medical ignorance. It would be nice if I could say that from the experience of patients on this site GPs are at least now better informed about COPD., if not bronchiectasis. Unfortunately that doesn't seem to be the case with many GPs reluctant to refer patients to consultants when they are obviously failing to manage the condition satisfactorally. Also, they are still misdiagnosing conditions such as bronchiectasis as COPD or asthma because they are too arrogant to send the patient for the proper hospital tests. The fact that COPD patients are managed for years simply by GPs and practice nurses with no specialist help horrifies me. Bethany's question was a very good exercise and opened a can of worms. It seems to show very strongly that we have to learn about our conditions ourselves and from experienced patients and then badger our health professionals into giving us the treatment that we need.
Hi there Bethany, I've read your post about communicating with healthcare professionals. I will write down some relevant points later on today and post them on the site.
I have been lucky in having good support from my GP practice and from my consultant. What has stayed in my mind following the first meeting with the consultant some years ago now was that at the end she said "are you happy to follow the plan of action that I am suggesting to you?". I thought that was a really helpful thing to say - she had already asked if I had any further questions or need for clarification. Also my GP practice has always found an appointment for me on the same day if I think I am brewing up a chest infection and they encourage me to go asap and not to worry if nothing is going on.
Thank you Pentreath. It's really valuable to know when things are going well and what exactly it is that makes the difference. It's the only way we can teach others to communicate better.
Its great you are having this meeting - id be interested to hear more about who it is with, who is funding it etc.
Generally Ive only had good experiences. At my last visit to my new consultant (who i insisted i see rather than the alternate locum one available) he showed me in detail on the screen the ct scan which had recently diagnosed bronchiectasis - the widened airways where the mucus was pooling and the bullae from the emphysema. He asked what i knew about bronch and whether i had looked up stuff on the net, which he seemed to feel was positive without thinking that i SHOULD have done so. He checked i have a respiratory nurse (i do) and talked over options such as 3 times a week azithromycin. He sent me away with a detailed printout about bronchiectasis and its management and I will see him again in 6 months, unless there is an emergency in which case i can call his secretary.
My respiratory nurse had already given me details about bronch like mucus samples needing to be labled CF protocol; the possibility of the profilactic ABs; and that for bronch infections you need two weeks AB treatment. I can call her any time i want, besides having regular check-ups twice a year.
All the practitioners seem to communicate with each other to the benefit of the patient. At the end of my recent PR, when despite getting much stronger, I had become very panicky about mortality issues following the bronch diagnosis and a spell in hospital with pneumonia. She thought i probably had a bit of post-traumatic stress and referred me to the team's respiratory counsellors one of whom i duly saw. As there was a wait, my resp nurse got in touch and pushed her to see me sooner.
The respiratory physios also run a £3 weekly maintenance session for PR "graduates" which keeps me motivated.
I have severe copd, moderate bronch and asthma. I've also been an expert patients programme tutor so have taught self management to many people with long term conditions (strangely never once to anyone with copd!). Which is by way of saying that I approach healthcare practitioners with the assumption that they will partner me in the management of my conditions, not talk down to me.
Ive gone into some detail as I think the multi-displinary respiratory team is amazing. They seem able to interact with their patients at the level of self-management that each patient can deal with. Their communication is brilliant. They have a respiratory education network which meets maybe a couple of times in the year - my GP always goes - where they invite patients to give presentations and to be part of panels. I am in East Kent, in case anyone is wondering where this is all happening.
There may be things i've left out but this gives you a picture. All in all, the healthcare staff i come into contact with automatically work in partnership with me. I can't fault them. I get so angry when I read accounts from Stillstanding and others; there is no need for the medical profession to be so ignorant and no excuse for that kind of behaviour.
Hi 02 I think I'm moving to E Kent! It just shows you how patchy and disjointed our treatment is.I do think that the multi disciplinary approach with the respiratory nurse as the pivot should be adopted nationwide.
Hi 02 - I have long thought that it would be great to have a COPD/Respiratory specific Expert Patients Programme - preferably tutored by someone like yourself with first hand experience.
Yes, I might heave myself out of "retirement" for that Parvati.
My EPP region does run occasional specific groups, they've done them for people with MS, and those with Parkinsons i think. One of the main things the courses do is to give people the confidence to work as an equal with their healthcare team. We've been brought up to be so deferential to doctors etc. Every long term condition presents so differently for each person so we are the people who know how our condition affects. But there is still resistance about understanding that.
Thanks 02 - yes I did recover but have been 'grounded' with oedema this past few weeks - started out pretty mild after returning from a trip and thought it would sort itself out but unfortunately my legs and feet ballooned and don't seem to be in any hurry to go down. On ever increasing doses of Lasix so hopefully will deflate sometime soon (though have used it as excuse to snack and sit watching TV which I know is stupid. but then I'm feeling so fed up and I'm only human!). Hope you are in fine fettle xx
Yes, thanks Parvati, Im good so far this winter. I had what they call "pitting oedema" when i was ill in March so I know that feeling, its like heaving blocks of wood around.
You don't mention an infection so you know what brought it on?
I just assumed when I got home from Paris that it was from the strains of a long journey and would clear up - and it was just a mild puffiness for a few days that I didn't really pay any attention to - but then one morning I got up and the moment my feet touched the floor I had that horrible sensation and looked down to see massive legs and feet - can't get any shoes on It does seem to be going down a little now but still very swollen. Back to Doc's after the weekend if it isn't gone - got three bunches of asparagus to nibble my way through this evening in addition to the tablets LOL
It's so lovely to hear about good care, and how things can be when everyone gets it right. This is going to be really useful, thank you so much for taking the time to share.
PS: 15 years ago in London, when copd was first diagnosed, like others it took a while to get the hang of it with neither my consultant or the GP telling me what i had - i thought it was a development of my asthma. I had to educate myself on the internet. But that was then, luckily things have improved hugely as you can see above.
The pulmonary rehab staff are wonderful and very supportive (but I had to ask my GP for a referral and he didn't know where the courses were run in my area), my Respiratory Expert Practitioner Nurse is very nice but a bit slow and rather difficult to see (took me 11 months to get her diagnosis of moderate COPD), and my GP refers me back to the Respiratory Nurse - he thinks I am coping well enough not to need a referral to a consultant.
My care running up to and following diagnosis was diabolical enough for me to learn to look after myself - I now consider the GP as a 'prescribing tool' or 'sign -poster' and nothing more. Moving home gave me access to better GP's but still I go first to my Respiratory Specialist Nurse for anything to do with COPD. GP's generally have little understanding of COPD and haven't a clue re oxygen. Of course there are some that are OK - I am aware of the PCRS and the good work they do. Stigma is very much alive and kicking in the NHS too - I have learned to always seek out those who have chosen to work in respiratory as they are now the only one's I trust and feel i can relax with. There are many good general doc's and nurses out there of course - but I would never again automatically assume I was going to get best care or a sympathetic ear. If you remember 'that' letter in Pulse recently - that GP was by no means the exception - there are plenty of them around with the same attitude to COPD'ers. It's one of the reasons why I think we should be allowed to self refer to Pulmonary Rehab - you can't just assume your GP will do it for you. In fact learn all you can and never assume that everyone's doing their best for you - YOU need to do that for yourself.
It's really interesting to see how your bad experiences pre diagnosis have affected both the way you look after yourself and the way that you use your GP. I think you're giving good advice too.
Hi I like Parvati have learned to look after myself, fortunately I have a fantastic Respiratory Team I can phone with any problems and I always go to them before the Doctor, they saved my life last year after the Doctor did not prescribe the right antibiotics for Pseudomonas.
Over 20 years ago I was told by a Consultant that I had Emphysema he said I would not be offered a lung transplant because I caused it myself because I smoked, I was distraught.
I have since found that not all Consultants are like him and I have refused to ever see him again (Yes he is still around).
Wow. What an awful thing to say to someone. I'm so sorry you've been spoken to so badly Polly. I'm glad you have the option of seeing better consultants now.
I was misdiagnosed for 2 years by all the GPs in my practice except one (they kept saying late onset asthma, apparently very common with older people) included being told to take 12 puffs of Ventolin!!!) Finally CT scan confirmed Bronchiectasis. The general consultant then took me off my purple inhaler (Seretide) and boy was I back to being poorly again. It was my very good GP who put me back on it. It took the hospital ages for me to have a physio appointment -vital to the mucous up. I prefer to manage for as long as possible with GPs help. The practice clinic does not even cover Bronchiectasis - it is a Cinderella. I think GPs should have training to listen t that elusive crackle. Actually, a new GP wanted me to always go back to the one I see (didn't want to know) Kaye
I completely agree Kaye, listening to chest sounds should be something that should be done far more often than it is. I'm glad you at least have one GP who understands Bronchiectasis and can give you the help you need. But how sad that others don't want to know.
Defo agree about breath sounds .. When i was at my gp's talking about stuff i have posted early on
He would not give me nout A few hours later i was A&E seeing out of hours doc at hospital who did me letter for A&E re my breathing
Out of hours doc was tottaly disgusted i got nout of my GP given all lung crackles crepations he could hear HE even said every sound in he's txt books i have and he's never meet anyone displaying them all.
Anyway A&E put me on vetolin nebuliser give me new antibiotics and steriods.
They was going to keep me in but as i have to care for my dad surport my mum i could not.
I'm not surprised I'm not surprised the out of hours doctor was disgusted. Do you mind me asking what condition you have? (Sorry, I'm sure you've told me before!)
Thanks Denis. I wondered if you had a less common condition, that a doctor might not be familiar with the sounds. But then as we said earlier, so often people don't listen to your chest to begin with.
Pete was diagnosed with sarcoidosis in 1991 and not much was known about it then. He had a high dose of steroids and ended up with osteoporosis which was discovered through a bone density scan at the Royal Brompton. On the whole Pete has done well with treatment via the GP and the Consultants at the Brompton so has no complains.
He was diagnosed with COPD in 2010 (bronchitis) and had a heart attack in 2007 which meant having 3 stents put in. He now has back problems and is due to have a 2nd operation at Southampton General on Wednesday 2nd December. We hope this works for him as he is in chronic pain.
Pete has a good attitude to life but his back pain has really pulled him down. Still, there are lots worse off than him and he has me by his side at all times which is good.
Wishing everyone on this great site good breathing and wellness.
Hi Bethany. I can't contribute a lot to this discussion because I felt like saying "What health professionals?" For six years I have been trying to get some understanding about what has happened to my lungs. I had extensive, multiple, bilateral PEs after surgery. And never recovered. I realised very early on that I had chronic thromboembolic disease, but it took doctors four years to catch up that diagnosis. It is also clear that very unusually the clots caused an obstructive disease, but not COPD or asthma. It is looking like Obliterative Bronchiolitis. There is no treatment that has worked or will be effective in the future. For three years in the middle of this saga, I did not have a consultant, and my GP just kept saying it did not matter what I had, it was of "intellectual" interest only to know what it was, that I would never know what it was. All I could do was describe my worsening symptoms. He accused me of wasting GP time. Finally under pressure he did refer me and things improved after that. But the two conditions: one vascular, the other in the airways, are so unusual that I can access no specialist nurse. I should be starting pulmonary rehabilitation soon, and maybe I will be able to get some help through that.
Luckily I am very well supported by friends and family. But there was a horrible time when I felt that I was in a wilderness, no maps, no paths, no sign posts, and no one, no one, I could talk to with the slightest idea about what I was going through.
So what health professionals? Even now my lovely consultant is obviously at loss and if it is OB then I know more about the condition than he does.
Anyone able to wave a small flag for OB patients?
Thanks for the lovely site and all who work on and, of course, the patients.
I can only begin to imagine how you must have felt being told that finding out what was wrong was just an "intellectual exercise". I'm glad that you kept fighting and got your referral but it's wrong that you had to fight in the first place. Not everyone would be able to.
I'm sure lots of people on here have already told you how wonderful pulmonary rehab is. It's a great place to learn about ways to live well with a lung condition so hopefully you'll feel the benefits even if the healthcare professionals there aren't as familiar with obliterative bronchiolitis.
Best wishes,
Bethany
Hi Bethany, I can truthfully say that virtually all I know about lungs has been learnt on here. Because I only have mild/mod copd doctors don't want to know.
I used to get a twice yearly review with a respiratory nurse, but it got cut back to annually due to lack of nurses (they said this). I was diagnosed by a nurse and not by a doctor. I asked for an an X-Ray on diagnosis (according to the NICE guidelines) and this was refused by both the nurse and the doctor on several occasions, on the grounds that 'They know the damage'. I eventually had to plead health anxiety to get it 4 years later.
A few of my symptoms ie sob and low sats (often 90-92) are not typical of stage 1, but when I mentioned that to the nurses they dismiss it, with 'Everyone is different'.
I feel they have put down copd because of smoking, and never even considered anything else. I have been refused a CT scan, and a referral to a consultant, on the grounds they are not necessary. They said referral to a consultant is only made when the surgery could no longer handle my care.
I am constantly asking whether I have primarily Emphysema or Chronic Bronchitis and they always refuse saying angrily 'It all comes under copd' and it doesn't matter. Excuse me it does matter and I want to know. Mind you I don't think they know either.
On my annual reviews I usually only get a peak and flow test which is mainly for my asthma, and is not a reliable indicator of copd, though I did have only have my 2nd spirometry test last January since diagnosis 5/6 years ago. The nurses I find better than the doctors ie I asked one doctor whether I should have a pneumonia jab - her reply? 'We only give it to patients who have suffered with pneuomina several times'. The nurse asked me whether I have had one and when I told her what the doctor had said she said I definitely need one and gave me one there and then. It was also her who suggested the rescue pack.
Finally because I get a rescue pack on repeat prescriptions, I never even see a doctor for exacerbations.
I would like to see all lung patients automatically referred to a consultant and all relevant tests given ie CT scan. Isn't this done automatically with cancer and heart patients? Not with lung patients though....we are the forgotten ones.
I would like the nurses and doctors to interact with me properly and to form an action plan between us. I would like them to have the time to talk to me, and give me the information I ask for. I think doctors should take all lung patients seriously and not fob us off like they do now. It seems that we have to be proactive and assertive to get the treatment we need, and deserve. Not easy when you are ill.
That's it folks x
Oh 1 more thing - I had a very bad exacerbation once which came on very suddenly when I was out. I went straight to the doctors as I felt so ill. The 2 receptionists, when I said I hadn't got an appointment, looked at me as though I had crawled out from under a stone, even though I told them I had copd. They then said reluctantly that I could wait to see the emergency doctor but she was out and they didn't know what time she would be back. I told them again I had copd and needed to see someone and wasn't going away until I did! They then said 'Oh she has just come back in'....
When I saw the doctor and told her this she said they would have called me an ambulance if no one was available to see me. It's a cardinal sin to go to my doctors without an appointment
I know I come across as angry now but I am always very polite and respectful to medics, so it isn't my attitude which is a problem. x
I can only begin to imagine your frustration when doctors keep shutting down any conversation about what is going on in your lungs. I'm glad to hear that your nurse seems happy to listen and better informed about what you need.
It's very interesting that you raise the issue of communication with receptionists as well. While they may not be healthcare professionals, they can have a massive impact on your experience of healthcare when you are ill.
Have to admit my experience many years ago was a consultant who wrote in medical jargon suggesting I did not have the intelligence to understand what he was talking about, so how did I know what he mean't when he wrote those big words.However in my case and following many grumbles the doctors now work with me to manage my health. Many of the younger doctors are taking notice and using a new approach to the patients care. I also experienced the stigmatization of treating patients with mental health issues as being over anxious about the physical health and being told they were well when in fact they were not. I am just glad to see the changes progressing, but do not be complacent as some doctors still use old approaches especially in larger environments like hospitals. My theory is you have to have the knowledge to manage your illness, doctors are there to reach a correct diagnosis, monitor your treatment and assist in crisis situations like flare ups, accidents and acute illness. A regular named doctor who knows your history is far better to supervise your care, which most of us now have.
Hi Bethany, although I self manage with medical help, I still feel some doctors don't listen to the patient. Do not have a set care plan too spite more than one chronic illness, but usually get prompt treatment in a crisis. Care levels vary from practice to practice due to size of practices. Personally I feel a service that is not available every day is not going to meet the service users need. Illness is not a nine to five weekday only situation. Care services for illness need to have more coverage at weekends in the community to service patient need especially long term chronic illness patients.
It's interesting to hear your distinction between what happens when you need emergency care and the communication you experience when you need to talk about general management of your condition. Thanks Katie.
I attended my Gp yesterday for another round of a continuing battle. I have once again got a UTI, my 7th this year. I asked him to take me off Spiriva and he again said no. I explained that I had been to hospital to my urologist last monday, and he was very surprised that I was still on Spiriva, given the prostrate problems I have. From that hospital appointment, I went straight to Kings Mill Hospital as part of the vetting process to take part in EPV trials. The consultant, when going through my medical history, was absolutely astounded that I was on Spiriva still. Between then and my GP appointment, I went through my records. I was put on Spiriva Mar 2013. July 2013, I was continence clinic for wetting and then next month I was referred to Hospital due to a high PSA reading. I also had two UTI that year, something I had never had in my entire life...I'm now 66. 2014.....7 UTI's including two emergency admissions to Hospital.
2015. 8 UTI's so far. I took the print out from Spiriva to my GP and showed it to him reference UTI's and prostrate problems. He dismissed it but finally said "If you insist on coming off spiriva, so be it"...he went to his screen and said there, thats done. I asked what he was going to give me as an alternative and he said " Nothing...Looks like you may struggle for the next three or four months". I went on to explain that I felt so ill and suicidal, I felt all I wanted to do was go down a country lane and never come back. He just said, " do you think that will help?" End of consultation.
Brian that is appalling, I'm so sorry to hear you're being spoken to like this and I really hope you're feeling better since your appointment. Thank you so much for sharing this with me - I think it will be a very strong message in Wednesday's meeting. If ever you want to talk to someone about what you're experiencing then our helpline may be able to offer some advice about what your options are.
The other GP in the practice, treated me for exzcema on my back for 15 years. Every time I went I said it was spreading but he dismissed it as the nature of the thing. Luckily, a locum saw it and I then spent three years having cancer treatment on my back. The GP hasn't even had the guts to appologise.
I went to see my gp about 25 years ago because I noticed I was always coughing in school assembly and it became embarrassing. At the hospital they first insisted on treating me for asthma even though I knew it wasn't asthma and the inhaler I was given made no difference to my cough. After a month a registrar who was leavingtold me tthat the hospital treat for asthma first because it was cheaper but that he was going to recommend a ct scan. It was discovered I had bronchiectasis. I think consultants should listen to their patients and not assume we are stupid. I believe that self reliance is important but I have a stock of antibiotics to take when I think I have an infection and after so many years I have realised that it is unfair to expect me to always know when I should start to take them. I haven't seen anyone at the hospital for nearly 10 years and I don't feel that is right there should be occasional follow up appointments even if it's only once a year.
I couldn't agree more - consultants, and all healthcare professionals, need to listen to their patients. 10 years does seem like a really long time to go without an appointment. It might be worth talking to someone on our helpline and asking them whether there are any guidelines on how often you should have your bronchiectasis checked. Their number, if you need it, is 03000 030 555.
Thank you. I went to see a different gp a few weeks ago mainly because my own always seems to be fully booked and he has referred me back to the hospital so we shall see how that goes.
Hi Bethany when I was diagnosed 11 years ago I was given a blue inhaler and told to go home and stop smoking.
If I had been sent on a pr course I would of managed my condition much better for years I had panic attacks when I was breathless, I had a chest infection for 3 weeks without meds because my old GP would not give me a script to have at home and had to wait 3 weeks to see him.
I would also like to know why nurses do the lung function test different from others normally you blow 3 times in to the tube and the average is taken and then some get you to take 4 puffs of your blue inhaler through a spacer then blow in the tube I feel this does not give a true reading.
I would also like to point out I saw a locum I thought I had a chest infection it turned out it was not but because my sats were normal he refused to give any meds for home I and many other sufferers sats stay at 96 and this does not mean you are well.
In different places the level of training that nurses have had in specific areas (like spirometry) can vary hugely. Before I started working for the BLF I thought I knew what postcode lottery meant. But I didn't have a clue how significant the differences could be until I started talking to people with lung conditions every day.
Hi Bethany I understand the difference between training but to maintain that level of lung function I would use a blue inhaler every day, I just think it is best the other way that gives a better reading and most important we can manage our condition better.
I felt threatened and upset by a copd professional who rang me this morning asking me why I'd missed by 6 monthly check up. I didn't realize I'd had an appointment,. She went on to say that I had and that I must of got the appointment by letter they had sent. Which I disagree. Her actual words nest were ,The government are cutting down and if you miss an appointment we can stop your oxygen prescription.
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It does seem to be going down a little now but still very swollen. Back to Doc's after the weekend if it isn't gone - got three bunches of asparagus to nibble my way through this evening in addition to the tablets LOL 
Update for all interested 
Big thank you (bottle update)
lung pain with blood clots 
Hay fever season 🌸🌻
Severe COPD and cataracts.
