I have suffered with this condition for years but only been diagnosed in 2010. My previous doctor -now retired- was happy to prescribe antibiotics as instructed by lung specialist. He even ensures that I had a supply of antibiotics readily available for future infections. Now, my new doctor shows great reluctance to follow this course of action and requires a visit to the surgery first and a sample of sputum every time I succumb to an infection. In other words, I am not trusted to recognise the early symptoms of an infection. The trouble is I produce very little sputum. By the time I do, the infection is already quite advanced, I feel terribly ill and cough non-stop. This means I need even more antibiotics to clear this infection. I am 71 and I don't believe that this is for my own good. Any advice please?
PS: By the way, I have requested a review of my condition by a second specialist -my current diagnosis is 10 years-old. But I am told it is not necessary (even though I have offered to pay for a new consultation). I am really greatly distressed
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furelise
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Oh dear, here we go again! Ignorant GPs treating bronch exacerbations as the infections which normal people get or copd and a complete lack of specialist help.
I despair!
COPD patients have ‘reviews’ we need constant changing supervision according to our needs.
You should have a bronchiectasis specialist consultant with whom you have your main relationship.They should tell your GP which antibiotic to give you to keep at home for exactly the situation you describe. It should be the right antibiotic in a high enough dose for at least 14 days. It seems that your last GP was very goid at this but your new GP needs a short sharp shock in a letter from a bronch expert to kick them into line.
Your GP is failing to fulfil your treatment needs which is resulting in delay in treatment and the risk of further lung damage.
I’m afraid that you are going to have to take the bull ( or the GP) by the horns and be very proactive. Find yourself a bronch specialist. They are usually at big teaching hospitals. NOT a general respiratory consultant. They are not sufficiently trained or experienced in it. Take the name to your GP and INSIST on a referral. Do not take no for an answer. There are several of us on this site who have had bronch for most or all of our lives and we rely on this expert and consistent help to keep us going. It is more and more important as we get older.
Thank you and bless you Littlepom. I know I have a battle on my hands. I am in the throes of an infection right now, and when I am better, I will "gird my loins" and get in a more combative spirit. I'll let you know.
Do let us know how you go on. We are here to support you.x
A very difficult situation because you don't want to upset your new doctor, you hopefully have a long time partnership ahead of you. I should take the line that what is being suggested now is a serious criticism of your old retired doctor who trusted you and recognised that you had sufficient experience in getting it right. The new doctor will have been trained to watch out for excessive use of antibiotics, which we all agree is a bad thing, but hasn't yet got the experience to spot the genuine need.
If that doesn't work then dig your heels in and use the word 'ridiculous' often. 😉
Thank you Don-1931. Your summary of my situation "spot-on".
Really, one shouldn't care about "upsetting" a new GP. It is up to them not to upset a new patient. But of course, I am a civilised person who believes in constructive dialogue. And I realise how important it is to have a good relationship with one's GP -one based on mutual trust and respect. But, now, I am beginning to feel inadequate and ignorant AND pushy. Of course the last thing I want is to gain a reputation for being a "difficult" patient to treat. I want to discuss this on equal terms with my GP... if I am allowed!!!
However, I envisage a time when I WILL have to put my foot down and insist on seeing a lung specialist again!
The Royal Free Hospital London has just reply to a enquiry I made earlier -also suggesting that I have to insist for a referral, but that it is up to me me to designate my choice of a specialist. Frankly I have not a clue. Is it ok in this forum, to ask if anyone can advise????
Where do you live furelise? Look on the websites of the teaching hospitals for their respiratory consultants. Then read their profiles. It should say specialism is bronchiectasis or a special interest in bronchiectasis. Take the name to your GP. I can recommend a good con in Bham but it all depends on where you live. You are not being a difficult patient or making demands to which you are not entitled. Giving us this feeling is how those with piwer over us keep us in the place that they want us. You are paying that GPs salary!
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A nice answer Don but life with antibiotics and bronch is different to the normal population. Too many GPs deny the right treatment for bronchs because they have no training in it and are too arrogant to read the guidelines. This results in them failing in their duty of care to a patient. I wd rather ruffle their feathers (and I have had to in the past) than continue to decline in health because of sloppy treatment. My current practice freely admit that they do not know much about bronch and liaise with my consultant frequently. The perfect solution.
You too Littlepom, are absolutely right. In addition, when one is very ill because of an infection, one is also quite unwilling to fight with an "arrogant" GP (more like an ignorant GP!). And my next fight is to persuade my GP to send me for a second opinion and for a review of my condition. I need to feel a lot better yet!
This latest bout has left me really weakened both physically and mentally.
Thank you both, Don and Littlepom. Your support is already having a "healing effect on me. x
I live on the South Coast and was referred to a specialist at the Brighton teaching hospital (a fairly long way from home). But they never suggested a follow-up -which I would have thought would be obvious. They just said that if my condition should worsen to contact them again...
But with my old GP's good care, I never got worse.
The reason I now want a second opinion is not that I am worried about any deterioration of my condition, but because I want this new GP to have an up-dated review. Is that too much to ask???
How I wish I was part of the normal population, in some respects.😉 My old dad had a unfortunate saying “There’s always more than one way of skinning a cat”, sorry Scuffy. In a case like this I would much rather get/force the doctor to do what they are paid to do than run around doing it myself. Naming a consultant if one is found would show determination. Accepting sloppy treatment is obviously not an option.
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Too true. It’s all so exhausting being ‘not normal’ x
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I suppose it has become 'our' normal. 😉x
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Sure is for me Don. I have never known any different. 🥴
Good advice from your BLF friends. I have put up a link of respiratory consultants in Southampton. Check out each one (one with a special interest in cf or non cf bronchiectasis is the way to go, then you might want to either email if there is one or telephone her/his secretary. Don’t ‘slag off’ another doctor but you could let them know that you note they have a special interest in the condition you have and would the consider a consutation. Once they say yes ust let you GP know and let them know you want to be referred,
I have just found out from Brompton Hospital that a private consultation is between 250-300 and a CT scan from about £950. Quite a hefty sum, wouldn't you say?
I have email all this t my GP, who happens to be away till next Monday. I hope to get a reply soon after.
Thank you all for joining-in.
By the way, any thoughts about cough linctus???
I used to be able to buy a very effective OTC one that was codeine-based, But it has now been discontinued (banned?), because of the risk of addiction! Our Nanny State is never short of good causes to irritate the public. Is it a conspiracy or what?????
Yes - a hefty sum, but I can confirm as a private bronchiectasis patient myself (at Papworth Hospital Cambridge*) that the amounts you quote are broadly in line with what I pay.
With that consultation fee I would expect you would get blood tests and physical breathing tests - the sort that put you in an air-sealed chamber. I can also understand why any bronchX specialist would want you to have a CT scan unless you have had one within the last couple of years and your condition has not changed since that last scan.
*I'm a Brit expat living in Thailand and choose to get my annual reviews in the UK due to quality of analysis and advice at Papworth.
Poor you. I’ve been through much the same, especially with a change of GP. Now I am under a consultant at my local hospital who sees me every 6 months and has written to my GP on my behalf a couple of times. He advocates me taking in sputum samples at the first sign of infection and had to write when theGP practice started questioning that. After a series of bad infections a few years ago I was also referred to the Brompton where I saw a world expert on bronchiectasis and got excellent advice from their physio.
Now the good news...I am doing very well. I have learnt how important it is to manage my illness myself with healthy living. I try and do some aerobic exercise every day, as exercise moves the gunk around and helps my lungs, I do my breathing exercises , I use salt breathers, wash my sinuses with salt, and lots of hand hygiene. Life is much, much better.
In addition, I think I was referred because the local consultant saw how I was keeping a good record of infections and treatment and was keen to manage it myself. I had all the tests you can think of on the NHS. No need to go private once you can break through the resistance of an uninformed primary care giver.
Unable to give any further information after all the great posts above, but just want to wish you good luck in your campaign for appropriate treatment, and hope you recover from your present infection soon. Is Fur Elise a favourite piece of music for you? I used to love playing it on the piano when younger.
I can't offer any advice as the same has happened to me, my new doctor won't prescribe a rescue pack like my previous (probably as he didn't live through the illness and diagnosis and I'm only mild). I am expected to see him when ill. I think he's one of those who's trying to cut costs for NHS Hope you get a better result. Fortunately I haven't been too bad over the last year and fingers crossed it will stay the same. x Anita
I’ve been through a similar process. Being not given enough antibiotics to knock infections on the head which has led to repeated low level infections. Arrogant medical staff in local Primary care practice who assumed I had yet another exacerbation of COPD which actually was pneumonia. Refused X-rays! Led to a very serious lung infection which almost cost me my life. Shout out loudly - you know your body best and you have to demand the right care. You pay them via National Insurance. You are the client and they are there to serve you! I know the medical profession is being squeezed by government but you have to push to see the right people. I’m not taking any chances again. I should have demanded an X-ray that would have nipped the problem in the bud. Dealing with infection is a priority for us lung lot and it’s a right to be treated efficiently and quickly. Good luck 👍
I am sorry you have experienced such a bad time. I hope you are ok now, keeping well and not having to beg for medication.
I absolutely agree with you about having to push. Fortunately I am retired now and I can "afford" (timewise) to stay at home. I have been ill now for 10 days, but on antibiotics for only 6 days. Although my temperature has now dropped, I am still cough a lot particularly at night. As soon as I fall asleep, I am woken up, half choking with coughing. The only thing to do is to get up and pace up and down nearly all night. I find that cough linctus/ syrup are not very effective. I used to use one called Pulmo Bailly . It was extremely effective but it is no longer for sale as it is codein-based and therefore "addictive". I expect I'd have a similar up-hill climb with trying to obtain any codein-based cough mixture from my doctor, as I have trying to obtain antibiotics.
So I suffer on my own with very little support. Doctors really make me feel like a child asking for sweets I don't deserve!!!!
I sometimes wish I became really, really ill... perhaps then I might get my "sweets"!
By the way, I did get a CT scan 10 years ago... after I coughed for 8 months!!!! That was when I was first diagnosed. But nothing since.
You look after yourself Thomas and try to keep well this winter. Stay in touch.
Will do- I’m retired too and have sinusitis at the moment! But I do use Lemsip liquid for chesty coughs- contains Gualferisin - breaks up mucous and makes it easier to cough up. Have learnt the hard way to deal with young doctors who are not experienced in COPD is to scream and shout! Well not quite, but you understand what I mean! Take care 😉
I think you're supposed to have a rescue pack so that you can nip an infection in the bud.
My mum too produces little sputum, and hasn't actually used the rescue pack, and ends up in A&E by the time she has shown symptoms (semi conscious). One of her GPs was really great as they were open about needing instructions from the specialist consultant.
Her consultant did say though to use antibiotics judiciously so you don't build up resistance - having said that when my mum get's ill it's so fast that she ends up on an IV!
I too collapsed once and was rushed to hospital. The next thing I knew was waking up with an oxygen mask of my face and tubes sticking out of my arms!!!! Unfortunately that was in France -thirty years ago! And I don't think the hospital forwarded any records to my doctor and I dont remember what happened after that!
At the time, I thought it was just a "freak" event, due to travelling. But maybe it was not.
After my diagnosis in 2010, I used to be given a spare pescription for emergencies. An "emergency" was, for example, before I was well enough to take myself off to the surgery. But this new doctor insists on a sputum first and a visit in person! As if I could!!!
The trouble about delaying is that the illness real takes hold of your lungs and then you need MORE antibiotics to clear it. How about that for "judicious" use of antibiotics! It leaves me feeling extremely depressed!
Indeed it is not, but I have only ever had two GP's in my life. But since my last one retired, I have had to change surgery twice. I am running out of option (I live in a small town!). And in any case, and I am sure you would agree, it is better to "educate" my current new GP if I can, than run away to another unknown one. Best wishes to you
whilst I agree with what has ben said I would add the following rider. I did have a stand by antibiotic which was used to treat flare ups, what really needs to happen that a sputum sample is vital as some bacterial infections need different antibiotics. I have had several infections which needed specific targeted treatment.
I have an agreement with my GP that as soon as I feel I have a problem I will take a sample in and see what the infection is.
I have posted before but I am now on antibiotics 3 days a week until next year , he idea being that my lungs will be reasonably well should my underlying nemesis ,Pseudomonas infection, tries to rear its ugly head again. H
I understand Safa, and I know about Pseudomona. It is very serious. But my point is that I do not produce sputum, or so very little that I am rarely aware of it. As I said before, the infection is well underway before I can manage a big enough sample. Then it takes a larger dose of antibiotics to clear it. It is a vicious circle. As I said to my doctor, I don't want to be experimented by way of trial and error. See if my latest sample -if it was of the right amount and quality - produces positive evidence. Thanks for your input.
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