Hi, I’m after some thoughts on how to get the support I need for effective treatment of my bronchiectasis.
I have posted previously about flare ups but I moved health authorities in April and since then have had numerous visit to the doctor for breathlessness and infection, I’ve been on anti biotics and steroids which alleviate but it starts again as soon as I stop.
my previously respiratory support wanted to look at a change of treatment but this new doctor hasn’t even referred me yet. He just treats the flare up and sends me away. I’m getting more and more frustrated with the different doctors I see not listening to me.
It’s like they just want to get through their list of patients without trying to find a better treatment plan that may improve the situation.
Written by
Mama-bear60
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Hello and welcome. You are not alone with the problem of an ignorant lazy GP who knows nothing about bronch. Firstly unless you have asthma with bronch oral steroids are not recommended. They mask the real problem ( infection) by reducing symptoms temporarily.Don't mess about. Find a true bronch specialist on the website of a teaching hospital that you can get to. Not general respiratory teams or consultants they do not have enough training or experience in it. Take the name to your GP and INSIST on a referral. DO NOT TAKE NO FOR AN ANSWER.
Bronch is complex to treat and every badly treated exacerbation can lead to more damage.
We really do have to be very proactive and vociferous in sourcing the right treatment. Let us know how you get on.
I agree with Swizzy, you need to push your GP to refer you to a bronch consultant, even if you are ununcomfortable doing so. Unfortunately, i think most of us have been round the houses before getting the correct help. Hope you get it sorted soon. X
It's just awful 💔, I had the same issue, went to doctors about my asthma about 30 times and they kept saying its hayfever turned out I was heading towards an asthma attack which I had on 31st of May. I hope you get to the bottom of what's causing your symptoms! What referal you waiting for? I keep insisting on a chest clinic referral but no one will take me seriously even though I had an asthma attack and needed 4 lots of steroids! 😳
Hi did you have a respiratory department at a hospital prior to moving and could you not get a transfer to the nearest bronchiectasis consultant via them sending an email to gp or specialist at all
At risk of repeating what others have said. You need a lung specialist to confirm the bronchiectasis. Usual treatment Azithromycin 3x per week. Take plenty of exercise, as much as you can manage. My wife aims for 10,000 steps per day, about 3 km. She is struggling a bit at the moment as we both had Covid in July and the effects are fragging on. Good luck, don`t take no for an answer from your GP. have a good day, Chris.
Are you even on the right antibiotics? A mild general one like Amoxicillin can mask the symptoms for a few days and then the germs stage a comeback. Bronchiectasis needs a fortnight of stronger abs. preferably after a sputum test. Good luck.
If you can afford a private consultation with a bronch specialist, I would suggest you ask for your GP to refer you to them. Be sure to give the name of the specialist you want, or ask for a choice then Google each one to see who sounds right for you.
If they don't think you're GP is giving you the right treatment, they may write to them to advise them or they may even, if you're lucky, transfer you to their NHS list, which is what happened to me, albeit 10 years ago and, for a different issue, 3 years ago.
If you don't have health insurance, be upfront about whether you can afford ongoing private treatment or not. You can find the price lists online or ask the receptionist. Don't be embarrassed by it as they are used to people asking questions about prices etc. If you are unable to pay for further consultations, tell them that and, with luck they will send your doctor a comprehensive plan for them to follow.
Due to a previous GP being reluctant to refer me to any consultant for any problem, I have had several private one off consultations and, with one exception, the consultants have very genuinely helped me as much as they could. One transferred me to his NHS list straight away as he could see what a state I was in and I had already had two hospital admissions, and the other said, 'If your GP is willing to refer you to me at ******** hospital, I will accept the referral'.
My current GP is only too willing to refer to consultants. She is a lovely person who accepts that she doesn't know it all! Referring to my chest conditions, she once said, 'Ooo, you're complicated! I'm going to refer you back to your resp consultant to deal with this as your issues are beyond my current knowledge and expertise.' I love a GP who knows when they're out of their depth, don't you?
I had to find a specialist as my gp just kept referring me to a respiratory consultant who was useless. I found a specialist and asked my gp to refer me to her telling her I just wasn't receiving the right treatment , my gp is quite good so didn't need to demand. I must admit the consultant I have been under has been really good and started from scratch doing all the tests properly. Good luck x
I absolutely agree with everything that has already been said. In the meantime are you on something like carbocistene to thin the mucus and are you clearing your lungs regularly? If not look up active cycle of breathing on YouTube. You could also ask for an antibiotic to take three times a week like Azithromycin. Don’t let your GP fob you off with the same antibiotics each time. They clearly aren’t working for you. You also need 14 days as per the guidelines. Good luck time to get your elbows out.
Hi- would you like to call into our helpline and speak with our Clinical Team? they can advise on treatment options and check what support you can ask for.
Hi, can't add any more suggestions than already given here but I have a bronch specialist and although my health has deteriorated (I have other issues lung & non lung conditions that make my breathing and clearance harder), he and his secretary are always there for me. I hope you find that sort of support soon 🤞🙂
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