Next week, we’re going to a meeting with the people who are organising the next COPD and asthma audit. Someone with COPD will be coming with us to share his experiences, but we want more people’s voices to be heard.
Can you give me one sentence about your experience of care from your GPs and practice nurses? You can tell us about the good, the bad, or the ugly. Then we can try to share these messages at the meeting.
Although this piece of work is about COPD and asthma, we’d like to hear about your experiences if you have other conditions too. We won’t be able to share it at the meeting but it’s still useful for us at the BLF to know what’s happening.
I’ll be back on here tomorrow with more questions for you, so thank you in advance!
Written by
BethanyBateman
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61 Replies
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I have bronchiectasis. All of my GPs have had very little knowledge of it. My present GPs work closely with my consultant and myself and are very cooperative. The practice nurse cannot even say bronchiectasis. I have no respiratory nurse and was unable to get PR.
It's so frustrating that there is so little understanding of conditions like bronchiectasis. It's great that your GP is happy to work so closely with you and your consultant though.
I'm really sorry that you can't get access to pulmonary rehab. It's so unfair that it's not available to everyone who needs it.
My hospital team excellent. No respiratory nurse at GPs....Care from GPs is a lucky dip some good some bad. Spirometry nurse is not a nurse but nursing assistant.No understanding of process nor able to advise.
There is a lot of help out there if you know where to luck, However my mother in law was diagnosed 3 months ago, told you have copd given inhaler and told see you next year. She does not know what stage or what type of copd...nothing!
That's awful! She might find it helpful to chat to someone on the helpline about what to ask for from her GP.
Our COPD passport can also be quite a good tool to take to a GP as it highlights those things she has a right to expect. If she goes to this website passport.blf.org.uk/ (you may want to help her if she's not on line herself) then she can fill it in and get a personalised print out of the things she needs to investigate with her GP.
I hope that's helpful, and I really hope she gets some proper support from her healthcare professionals soon.
I would say that Pete goes to the GP on an as and when basis but one lady doctor, who has emigrated to Australia, called Pete an ambulance because his SOB became so bad. He spent 8 days in hospital and was diagnosed with COPD. I don't feel that any GP really knows about COPD or sarcoidosis.
Pete was told he wasn't suitable for PR and we have no respiratory nurse unless you need an asthma check but Pete doesn't have asthma.
I am very fortunate with my GP practice. All the GPs seem to work on the basis that they are on my side and we are a team. They encourage me to go to the surgery with a sputum sample as soon as anything kicks off and listen to my chest and decide on the best course of action. I have always been seen on the same day. My consultant sent clear guidelines (bronchiectasis) for treatment, for example needing two weeks of antibiotics, not one. No respiratory nurse at the practice but an excellent receptionist who offered me an appointment a few days after the start of an exacerbation 'in case you need it' when I was not well - saying that I could cancel it if I did not need it. Consultant arranged for me to go to a PR course - not all do this for bronchiectasis.
Hi there BethanyBateman and my local doctors are learning from me! I am learning from the BLF forum and I pass as much on to my Doctor as possible. We have no dedicated COPD nurse unless we go to Hospital where I am seen by a regular consultant who only has one Respiratory Nurse and she has to deal with all the LTOT's also. Very understaffed in Surrey area on the COPD front.
I have Obliterative Bronchiolitis , in a CTD setting.
Rare, very little information available, Rheumatology and Respiratory consultants work together and so far my treatment has been excellent, GP and Nurses, as much in the dark as me, same with community respiratory team, they had to go away and look this up. Bronchiectasis also apparent on CT Scan.
My GP is similar. I try to manage it myself now. Yes I could change my GP practice but I should not have to. There is no set standard of care for copd as far as I can tell. I have witnessed this within this very forum.
Here is an example post I made a while ago regarding Spirometry.
Some get full Spirometry once a year to monitor progression while others are only monitored for fev1 & pef with a simple hand held device, I can do that at home myself. Some are referred to a consultant early on with copd yet I have moderate/severe and doctor just wont refer me. Many have rescue packs available yet when I asked my GP he insists I have to come in to see him. I asked about pulmonary rehabilitation and was told I would be the fittest one there. I requested he refer me anyway but I am still waiting. My GP also lost some previous medical records of mine when they switched to a new system. Really I have got to the point I can not be bothered going to see my GP anymore as it turns into a hassle and can get me down. I am lucky to even get an appointment and sometimes have to wait half the day just to speak to a GP on the phone. Luckily I eat healthy and exercising regularly and have learnt to manage on my own. I am doing OK but it would be much better if all GP's followed the same standard. If you mention GOLD guidelines or the NICE Guidance to my GP it is like you have just insulted him.
I'm so sorry to hear you're both having such a bad time with your GPs. Hopefully, this is the kind of situation that the audit will help in the long run.
My practice nurse knows not a lot. She gave the lung function test that I asked for told me I had copd gave me an inhaler. Nothing else that was it .when I asked questions I was told Google has a great search engine. I have requested and now been referred to PR I have no emergency pack had no advice...What knowledge I have I've used to the best of my ability....it's not quite good enough to be honest but have a list of questions for my GP at my next appointment
GP's are generalists. It is unrealistic to expect them to know a lot about a specific problem, they have to deal with a huge range of illnesses. Mine spent time in the cardiac department in Chichester so she is pretty good at heart stuff. I rarely see a gp, I get looked after by a consultant in Chichester and another in the Brompton. This seems a perfectly sensible to me. The NHS is full of specialists, don't expect a gp to be one.
I'm like you lucky to see a consultant and have been going to addenbrooks , but there are a lot of members who gps haven't referred them to a consultant and don't know much about copd them selfs , some patients /members have been waiting and trying to get referrals for several years , only reson i got to see one was because my lung collapsed other wise she wasn't going to refer me and only gave me a Ventolin inhaler when i said its not helping she said don't take it then , didn't offer anything else
I didn't realise, that is awful. I first saw the consultant when I was admitted to hospital after being taken to a&e because of not being able to breathe. My gp would certainly have referred me, important part of the job is knowing when to refer up.
I had my annual test re COPD last week by a respiratory nurse who was fantastic. I changed from the surgery I had attended for 55 years after a bad consultation in November with an ill manneredGP and days later being told by a receptionist my request for emergency meds had been declined. The change was for the better.
I don't expect my GP to understand my conditions as they are rare, congenital heart disease, bronchiectasis, obliterative bronchiolitis but he is helpful. I have more problems with the receptionists even though my name is flagged. After my problems with atrial fibrillation last week I recognised that he is as frustrated with the English/Welsh cross border restrictions as I am, which need to be sorted out. Respiratory nurse doesn't seem to understand situation at all even though she is hospital based in Newport. Very frustrating for everyone, so it is not the medical care but the politics which need to be sorted out.
My GP treats me as an equal and discusses issues with respect for my own knowledge, listening to any research Ive discovered on the net. Her understanding of copd and bronchiectasis are excellent so I listen carefully to what she recommends.
My GP sent me of to the Respiratory Nurse who was nice but dim; however, she has been promoted to practice manager and replaced by a nice and well-informed new Respiratory Nurse who I'm looking forward to meeting again at my next review. Still don't know what component of COPD I have, but maybe I'll be able to find out from her.
I am a staunch supporter of the NHS anyway, and always allow that they can't be all things to all people - but will have their systems hiccups from time to time.
I'm very fortunate to be living on the Isle of Wight where the Respiratory Team at the main hospital are very keen and active in checking on their patients. The guys who look after the home-oxygen bottles and machines are also very caring and there are also Breath Easy groups scattered around the island. I suppose because the problems of COPD are more common, considering the age demographic, the island GPs are more aware and reactive to related complaints. I say that because I can't remember hearing any local complaints like some of those I read on this site, occasionally. Yep, I'm lucky.
Named GP very pro active and discusses current needs with my husband when needed. Surgery Resp. Nurse seen 1x yearly, but thorough. Community resp. Nurse 3 days a week only visits 6monthly& if contacted for advice or when help is needed says"contact GP". Hospital consultant, although in previous clinic letter time scale given for next vusit, we always have to ring to get an appointment, only to be told ther are none available for another month! These commenrs apply to COPD & IPF locally. Specialist hospital fine.
My GP doesn't seem to know anything about COPD when I last went to the doctor he spent most of the consultation with his head in his hands and said" your out of breath then" I said yes I am so he gave me steroids which I told him didn't work for me so I had to go back to gp after the course and he gave me different antibiotics. I always feel that I am taking up their time so have decided that I won't go again will try and manage myself.
I'm so sorry you feel that way Rusty. I can see why you do, but I worry about you not getting help if you need it. Have you tried talking to someone on our helpline? They may be able to give you some advice on what to ask for and how to ask for it.
When my Asthma is bad, I now ring the Community Respiratory Team and a Respiratory Nurse comes to see me the same morning or we discuss treatment over the phone, and then involve the GP for prescriptions. I can always get a telephone appointment with my GP if necessary. This works very well for me. I am very lucky. Other people don't seem to get access to the Community Respiratory Team. Is it just certain counties who have them?
It is just that I read so many messages on here, people having difficulties, and I feel if only they had access to the same system? It frees up the GP for other things,we don't have to spend half our time getting locums upto speed, or worry about whether we will even be able to get an appointment, and more important, we stay out of hospital. Hope I have not waffled too much here.
I know exactly what you mean Anne. There a huge difference from area to area, both in terms of what services are there and who gets to use those services.
One of the things I do is put on study days for healthcare professionals. Because they're people come from all across the country, they get to talk to each other about what does work and what doesn't in different areas. Hopefully, it helps some of them to fight for changes that will help their patients more.
I think all people with Asthma should be taught the Active Cycle of Breathing which is taught to people with COPD on the Pulmonary Rehabilitation Course. I know that people with Severe Asthma fall under the COPD umbrella, but I feel all people with a lung condition should be taught it, as it helps clear the phlegm off your chest, and therefore clear any infection quicker.
I have a very good team around me who support me with my copd, my doctor,community matron, the staff and volunteers at the hospis i attend for symptom control and of course my wonderful family
For my IPF I find level of care (GP and Consultant) is poor due to lack of awareness of disease and staff struggling to cope with ridiculous workloads.
Like most other people my experiences are mixed and basically depend on the skill, understanding and willingness to be involved of the individual. One GP landed me in hospital. I changed within the same practice and my present GP is brilliant, though on long term sick leave! There is one respiratory practice nurse who is approachable and pretty good. Her predecessor was rude and bossy. We have no community back up in the area, no home visits from COPD nurses.
Just a comment - primary care oversees most of patients' ongoing care. If you can see the same GP that's good. If not, most of your 10 minutes is taken up with trying to bring the locum or whatever up to date. Inhalers are prescribed on repeat with no review at all.
I had had COPD for several years when a hospital nurse mentioned it to me. I had never heard the term before because my GP had not told me of the diagnosis. If I ring the surgery about ANYTHING lung related, even oedema or heart issues, I am referred back to my lung team at the hospital. The GP would not help or advise when I had a bad reaction to my inhaler, saying I would have to 'manage' until my next hospital appointment 7 months ahead. GPs say they cannot treat me for what I am under a consultant for. I believe the truth is that they do not have enough knowledge.
Asthma is complex, therefore listen and take in everything your patient is saying.
Listen to your patient and if they are Nebulised, check it has helped/made a difference, before you send them home with a loaned Nebuliser. (I was admitted 2 hours later to hospital).
My current GP and Asthma Nurse are great, unfortunately my GP only works 2 days a week, but because she has been at the Surgery for a long time, she knows what my Asthma is like, and also knows me.
Hi im new to this site but need advice but my experience of doctors havkng copd &fm isn't good. To top all that after 7 years on being on motorbility iv just been told by pip that I scored o points. I was housbandbefore I got my car for 3 years & don't know whats going to happen. i dont have a chest specialist & rely on rescue packs on which I was refusef from a new doctor at my surgery & now have plurasy so painful. My faith in doctors is 0 ???
Why not give the BLF Helpline a call? 03000 030 555 Mon-Fri during office hours.
My mother's previous doctor know very little about her COPD and was not at all helpful she never got her flu jab this past winter. She was never referred anywhere
Patchy. When I first went onto my present GPs list I asked for someone who had a special interest in respiratory. My primary GP had worked in repiratory and is very knowledgeable and was the only one who knew if my lungs sounded better or worse than usual.
He is now near retiring and part time. He is also very popular, and I reckon you could get an appointment with the Pope easier.
I don't expect them to have the indepth knowledge a consultant specialising would have but it does tick me off when, one doc in particular insists I have COPD, when I clearly don't.
I don't think they get a lot of patients with bronchiectasis at any one surgery. One locum gave me a prescription for 250mg amox for 5 days! That put me in a very difficult situation because I need him onside, so it's tricky to put them right without sounding cocky, as to be honest I might as well have used them as a supposotory for what good they would have done. I just mentioned that as he knows the guidelines state 14 days for bronch. He wasn't going to say he didn't know and looked at my repeat prescriptions and sorted it.
It is frustrating Bethany but whilst I am concious I can stick up for myself, I do feel however, there are some people, who for whatever reason, will have to accept whatever the doctor says as right.
Rubbish, I have had COPD for 5 years .My GP first said I was to young to have it at 47,i was given 2 inhalers and no information.5 years on feeling completely breathless, depressed and desperate visited my GP and pleaded for help. I have now been referred to a repertory team who have offered me a management plan and pulmonary rehab.
I feel this is all too late I really should have been offered this support ,information and educated about COPD 5 years ago.
I believe this invisible disability is managed by a lot of good clinicians, however they have no idea of the impact it has on your life and it is life changing.
I was dx in 2006 with COPD. My care has been good my first GP practice had at least one doctor that specialised in COPD and I always got an apointment when I phoned. Saw the practise nurse every year for spirometry test. Had to be refered to resp consultant at my local hospital when I started getting infection after infection. When I moved house and went to a different GP practise. They refered me to the community resp team they are open 24/7 and they come to your house although my GP practice has a GP that specialises in COPD. I also attended a different hospital. The consultant there refered me to a immunologist consultant who I am seeing at the moment. She did different tests and found out that my vit D was very low. And my immune system is very low too. I have been put on Azithromycin building up to take 1 every day and vit D tablets. Also was recently given 2 vaccinations Menitorix and Pneumococal Ploysaccharide vaccine sonofi Pasteur MSD. And have to go for blood tests in 4 weeks to see if these vaccines have built up my antibody dificency. I also suffer from two autoimmune disorders. So I am very happy withe the treatment I am getting. I am 59 and live in Scotland. I have also attended 3 PR courses and at the moment doing a follow up cardio exercise class at my local gym. I was referred for this by my physio at the last PR group I attended. I am stage two moderate but my symptoms at the moment are stage 3 severe. And that is without an infection.
COPD Fev1 29-30% on all inhalers. 25% without. I can never get to see my GP, I try not to bother them too much as I know they are busy, but on the odd occasion when I feel I really need help they are not interested. In my last property which was a different county they helped with positive encouragement like pulmonary rehabilitation and help with the correct drugs, and there was a hospital outpatients I was sent to with a specialist team of respiratory nurses who monitored my health regularly and they were very knowledgeble and informative and made me feel safer. Here there is nothing. No specialist team in the hospitals to be refered to and monitored by and the GPs have no knowledge, even advice given by BLF is questioned and I have to insist on rescue antibiotics and steroids, they don't understand why. I see an asthma nurse twice a year at the surgery, who is lovely but has no idea about COPD but has begun training. I recently had a reaction to Clarithomycine where I thought I was going to die, and I have not been able to get a GP appointment to talk about my options now. It's desperate. I just do not seem to be able to say the right thing to get help. It's like I don't have the key to the vault! I was diagnosed COPD 25% lung function 2010. I had pneumonia here in 2016 and the gp wouldn't come out. I'm fortunate that the hospital I used to attend kept my name on the books because there was no one to pass me onto here, and if I'm really ill they will see me, hence when I described how I had been sent me for a scan and it showed I was post pneumatic.
That's awful. It's so frustrating to see such huge variations in standards of care from one part of the country to the next. I'm really glad your last hospital was willing to keep you in their books but it's not right that you have to resort to that.
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