Bronchiectasis and GP Practise

[Annie04]

Hi, I have been just recently diagnosed with Bronchiectasis and I had never heard of this before. I had a CT scan after hospital admittance to confirm this after being very unwell. I’ve had 4 infections in four months and feel wiped out, my latest is an pseudomona infection. I have severe allergic asthma (which seems to have tied in to this diagnosis) and use my Nebuliser 4 times a day. Although my Consultant seems knowledgeable my GP practise seems to not know what to do with me. I’ve been told they will not accept sputum samples to diagnose what antibiotics to start using. Therefore I don’t know if this latest infection is clearing up and I still feel awful. Any advice please?

[Alice70]

Annie I have bronchiecstasis with copd ,I was having infections every six weeks ,my consultant put me on azithromycin one tablet three times a week ,I haven't had infection now since before xmas ,although I am not happy to take these antibiotics continual but they have done the trick ,there are lots of us on here that take azithromycin, and the way I think of it now is I was always on antibiotics anyway ,No GPS dont seem to no a lot about bronchiecstasis ,and to say they dont except sputum tests is ridiculous, do you have a hospital near you you can take one to ,but you would still have to get sputum bottle and paper note from gp ,if I were you I would get intouch with your consultant through his or her secretary, and explain your situation ,oh and by the way you should be given a rescue pack of antibiotics plus steroids, your consultant needs to write to your doctor good luck

[Hidden]

GPs know nothing about bronch and need the instructions of a bronchiectasis specialist to know how to help with your on going treatment. Mainly by supplying you with a rescue pack of 14 days of whichever antibiotic your consultant recommends and yes- sending sputum samples to be tested for the bacteria if your usual ab does not seem to be working. Loads of people on here do that regularly. It is nonsense and a failure of the practice’s duty of care to refuse to do so.

You have to take your GP and your treatment into your own hands I’m afraid.

Firstly, check that your consultant is a bronchiectasis specialist and not a general respiratory consultant. There is a major difference because general specialists have very little training in bronch and virtually no experience. It is a complex condition. If the person you are seeing is not a bronch specialist look for one in your area. They are usually at large teaching hospitals, have their own clinics and the services of a physio who can help you with clearance tecniques. Take the name to your GP and insist on a referral. Do not take no for an answer. The GP is obliged to do what the consultant tells them. If they refuse, call your consultant’s secretary and make sure that the consultant knows. It is always a good idea to form a relationship with your consultant’s sec. If I have a problem with my bronch I never go to my GP but ring the con’s secretary. Insist that you have copies of the consultant’s letters sent to you.

As you have just been diagnosed you need to get control of this now before your GP allows you to go down the slippery slope.

I’m afraid that we have to be very proactive in our own interests and vociferous in sourcing the right treatment. Good luck.

[goat-lady in reply to Hidden]

Great reply - I now know what to do now to with my HP n GP. M

[Annie04 in reply to Hidden]

Thank you all for your understanding and knowledge. I have found out far more here than with my consultant. In looking around I have also checked out Papworth Hospital at Cambridge and the new Lung department, it’s seems very professional and with areas that I have read about to self help with dispensing and applying meds etc. This is not too far to travel to and I’m considering asking to be referred. Incidentally, has anyone had a private consultation and if so have they found it to be beneficial? I ask only that my case is still being looked at for Allergic Pulmonary Aspergillius with Bronchiectasis.

Thanking everyone is advance for your time.

[Hidden in reply to Annie04]

Private consultation can help if you are getting absolutely nowhere with a referral to a bronch expert. Most private consultants are general respiratory consultants though and do not have the knowledge of a good bronch expert working in the NHS. Aspergilla is one of the things that they routinely test for when you go to bronch clinic. I think that your idea of the lung department at Papworth sounds very good. Look at the consultants, find the bronch expert and insist on a referral to that person. You are not wringing your hands and asking, you are demanding your right in the quest for appropriate and knowlegable treatment.

Someone else on this site took my advice and is now seeing a bronch expert after years of being messed about by GPs. She is amazed and delighted at the quality of the care.

It is really good that you have taken on board the advice of all who have responded to you. I am sure that you will soon be the expert in bronch and making medics take it seriously that many of us have had to become.

[Sparkywoo]

Completely agree with Alice70 and Littlepom. I had to get my consultant to tell my GP what he was to do when I was unwell, including sputum samples. I have a rescue pack as you need to move quickly when an infection starts - no good waiting a week for a doctor’s appointment. My GP surgery now have me on their COPD register (they don’t have one for bronchitis as the the receptionist always calls it 🙄🙄🙄🙄) but that means I get seen immediately if there’s a problem.

Initially I paid out privately to see the respiratory consultant I wanted to see. It was the best £200 I have ever spent and now my GP refers me back to him.

Afraid you have to own this, good luck x

[Annie04 in reply to Sparkywoo]

That sounds like a brilliant idea, did you then refer back to the Consultant on the NHS? Also, have you had to travel far?

I had no idea as to the COPD register but I will enquire at the GP practise, unfortunately I do feel as though I have to ‘up the game’ and be more proactive. Thank you!

[Sparkywoo in reply to Annie04]

I’m lucky in that the consultant I wanted to see was only 6 miles away and yes my GP now refers me back to him in the NHS. I hope you make progress, the illness and all the drugs are exhausting when out of control x

[peege]

I believe GP protocol is that bronchs must be under a consultant who can instruct GPs and also must be able to supply pots for sputum sample & send them for tests.

This is scandalous, I really hope you get something sorted and the relevant abs to treat the Pseudonomas. P

[Annie04]

Thank you all for replying, it’s indeed my responsibilities “to own this” I think it’s because I feel so unwell and have been off work for so long with it all, it feels like a continuous circle. My husband booked an appointment with the surgery (yet again they tried to go with the asthma nurse) whom I’ve been seeing for years and had become increasingly unwell until this situation came about. I’d been explaining how ill I’d felt to her and the meds, and inhalers had not been working but instead if referring this back to the GP or to someone who could help I became very much worse and was finally admitted.

Phew, sorry for the long reply. I just know that I do not feel supported at the practice, they have no idea as to what to do with me, it’s literally just there to subscribe my meds.

However, they grudgingly gave me 7 days of 250 penicillin and I called in for another 7 days worth, so indeed now I have a rescue pack.

As to to the “pots” the consultants secretary is nigh on impossible to talk to so I keep leaving messages on the answer machine.

Currently on Ciprofloxacin but feel it’s not going so well and saw GP yesterday and have amoxiclav and last 3 days of the Cipro to take. I honestly feel wiped out and exhausted especially again going to back to GP asking for 14 days worth, but onwards and upwards. Currently on a Nebuliser x 4 a day with salbutamol, and Ipratropium plus sodium chloride. I’m now

On afternoon/morning naps....!!

You have all been lovely with your advice and I’m very grateful.

[Hidden]

Cipro is not a nice drug but it is sadly the only effective oral drug against pseudomonas. Azithromycin is not effective against it and doxycyclin can react with other drugs.

250mg of amoxyll is about as useful as a bag of smarties in anything to do with bronch and shoild not be your go to for a rescue pack. This is why you need a bronch expert. At this point mine would probably be doing 2 weeks IV then long term nebulised antibiotic to keep the pseodo numbers down.

[Annie04 in reply to Hidden]

Thank you for letting me know. It’s a great help. I had a blood test for white cell count today in GP. I wonder if the pseudomonas infection would show up on this? Still on Co-amoxiclave 500 till then. This is a learning curve!

[Hidden in reply to Annie04]

It could show that your white cell count is up because you are fighting an infection but not the bacteria.

They are tinkering around the edges

Bronchiectasis specialist is what you need.

[Hidden]

Co amoxyclav won't touch pseudomonas either. Sorry to be so pedantic. It comes from years on this merry go round.

[Alfie2019]

Why won’t your practice accept sputum samples? That’s bizarre, I hand mine in monthly, this is so wrong, hasn’t your consultant written to your doctor? They usually inform your GP which antibiotics would be best for your condition?

[Alfie2019]

Hi Annie our of interest, Do you live in Scotland? Or England,

[Annie04 in reply to Alfie2019]

I live in England, thanks for your reply, so much to learn from this. I do feel in limbo, I will leave further messages for the Consultant via her secretary.

[Carnival567 in reply to Annie04]

It might be worthwhile writing to your consultant and putting your point of view. Some secretaries are better than others. Phone the Pals team at the hospital you attend. They are usually pretty good at sorting things out! You will know from Littlepom and other experience bronchs that you have to be proactive. If your GP carries on being difficult then you could pursue a formal complaint. As I once said to one difficult NHS employee, without us patients they wouldn’t have a job, and that their position was dependent on us!

[Mooka]

Hi Annie 04

Littlepom is absolutely correct. I have Bronchiectasis with pseudomonas and when the cipro stopped working I had two weeks of self administered antibiotics and have been on nebulised colomycin since. Co amiclav wont get rid of pseudomonas. You need a Bronchiectasis consultant to write to your gp and tell him that you need to have sputum tested as soon as you start an infection to try to identify the bug. Pseudomonas is notoriously hard to shift and you won’t feel better until you get some proper treatment. I really sympathise as it’s so difficult to be assertive when you are feeling so awful especially as your gp is so unhelpful. Good luck let us know how you get on.

[Annie04 in reply to Mooka]

I will indeed follow this through. As from today I have had to stop nebulising sodium chloride as it makes my chest so sore, I expect the pseudomonas are not helping this.

[Mooka in reply to Annie04]

I was prescribed salbutamol/ventolin to help with chest tightness when I first used the nebuliser. I had a period when my sputum samples were not being analysed by the lab for various reasons all caused by gp practice so my immunologist gave me a pre paid box to sent them direct to the hospital if need be. Good luck

[Annie04 in reply to Mooka]

Yes I’m on Ipratropium and salbutamol x4 a day plus montelukast etc...and still have to use my inhalers. They are dropping my steroids down from 40mg to 20mg then tapering off. I’ve been on them now for four months but nervous as to how I’m going to cope thereafter.

[cofdrop-UK]

A very warm welcome to you Annie.

Very difficult when you have ignorance within the medics as you need them onside at the same time. I often find not being confrontaional but just by saying ‘as you know (when they cearly don’t) the bronchiectasis guidelines state ......... What the guideines do state is a person with bronchiectasis presenting with an infection should send off a sputum sample and then start an antibiotic straight away. When the results come back and it’s clear what bacteria has been cultured and what it is sensitive to, then this antibiotic should be given in a high dose for 14 days. Amoxil will not work for gram negative (meaning it has biofilms) bacteria (of which pseudomonas is one).

I know of a good bronchiectasis specialist in Cambridge, who was in one of our meetings at European Respiratory Society Congress. I can pm his name to you if you wish.

Here is a link to the ERS Patient Priorities Bronchiectasis we were involved in. As patients are diverse the content goes from basic to clinician to clinician discussions. You might want to dip in and out as you go along.

europeanlunginfo.org/bronch...

Good luck.

Cx

[Annie04 in reply to cofdrop-UK]

Thank you, that’s very kind to share this information and I will take a look.

[Annie04 in reply to cofdrop-UK]

Please can I have this persons name

As it looks as though I’m going to ask for a second opinion. Many thanks.

[cofdrop-UK in reply to Annie04]

Will send you a link via pm Annie. Best not to diss you present consultant but to let him know you notice he has a special interest in your condition BE and would he consider accepting a referral.

Good luck

Please let us know how you get on.

Cx

[Bronc22]

Here is a downloadable booklet to explain Bronchiectasis in detail and the possible treatments. Hope this helps.

bronchiectasishelp.org.uk./...

[Annie04 in reply to Bronc22]

Thank you, I have downloaded this.

[Annie04]

Hello everyone, here is the update, after leaving messages for the consultants secretary asking to refer to my GP for “pots” for sputum testing I had to resort to calling PALS, they were very good and my Consultant has written to the surgery asking for three pots at a time, and she has copied me in.

I have finished the amoxiclav but still am extremely breathless all the time, I have reduced steroids to 10mg as per the Consultant advice and using the nebuliser 4 times a day. Still taking salbutamol 5ml, Ipratropium and saline 5ml. A variety of meds and I just thought I would feel so much more on the ball, and disappointed that I’m not, but I’m trying to return to work.

Now considering if pseudomonas or dropping steroids are the cause? I’ve been on these coming up for 5 months and I’ve been told she wishes to tailor down over the next 6 weeks to stop altogether.

My prognosis is allergic asthma and bronchiectasis and I’m sensitive to Aspergillosis my iEG is over 5000.

I’m going on holiday next month and upon reading my “rescue” plan I’m back to battle with GP on more steroids 30mg over 4 weeks and tapering down.

Sorry for the long post but this is all new to me. I suppose I expected to return to normality but instead feel as though I’m stuck with this constant can’t breathe.

Thank you all.

[Timberman]

Lots of good advice coming to you. Additionally however is to find your area COPD team. Every health district has one somewhere. They are specialist clinicians - senior nursing sister or practitioner nurses. And frankly too many GP surgeries are woefully ignorant in all forms of COPD. Indeed they are ALL supposed to have at least one COPD nurse; ours does.

I see you went to Papworth so guess you are in East Anglia somewhere.

I have severe COPD - emphysema and bronchiectasis - and once my meds were right I have a decent QoL. Three doses of pneumonia years back but only routine exacerbations since.

Links like these can be useful. Google "COPD services in (area)" and see what comes up.

cpft.nhs.uk/services/respir...

rcplondon.ac.uk/file/5046/d...

[Annie04 in reply to Timberman]

Thank you for your advice, I sincerely wish you well and glad you are are stable at the moment. Yes, under Papworth and now Addenbrooks, it’s a carousel of visits at the moment.