Sorry a bit vague last night.very upset.spoke to gp asked about devices,she had never heard of them.she looked at HHS guidelines online ,stated they were not listed.i was simply lost for words,I didn't mention that flutter could be prescribed,told her I was willing to buy device ,however needed guidance as to how to use as I did not want to cause any more damage having only 27 % lung damage and bronchi ecstasies .she stated she had not the time to look up info and she would get back to me...I will not hold my breath on that one.i stated that I had got my information from this site and that people stated that it was making a difference.it was very upsetting not to be listened too.last night I was telling myself that I would contact physio at hosp.met resp nurse at surgery.she had never heard of devices therefore could not help.never slept all night.its hellish to be in this position.perhaps the B.L.F. Can help.will tele Monday.so down ,tired and fed up.hopefully I will get a bit of fight back.thank you
Nelliex
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nellie15
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Sorry to hear you didn't get on very well at your G.P.
If you're looking for ways to remove mucus, breathing and huffing exercises are good you can find all about that from BLF helpline, or using a plastic bottle half filled with water and blowing through a straw works, and personally my husband and I have singing sessions that really helps.
Thank you..yes,thanks to this site l have the water and straw method.l do use it however l do not know how often too use and for how long.that was my main reason for surgery visit,mainly for guidelines and the idea that either the Capella or flutter could be carried in bag was great.still in shock,thank you for reply.nelliex
I know the feeling I was diagnosed 2012 and my lung function is very low. Do you have a Community Respiratory Team, if I'm ill or need anything I go to them rather than my G.P, I was referred to them when I did my PR course they deal with everything now.
Thanks kimmy,there is no resp comm team here.l live in perth ,don't know the overall situation in rest of Scotland.spoke to resp nurse in surgery last night,and as lve stated she had never heard of the devices.what a situation.l did state in my first post that breathe easy and had just finished plum.rehab,neither mentioned the devices.nor had any one attending these courses\meetings. Yes l huff and puff till l am exhausted.dont know how this will play out.probably labelled as a nuisance.will tele physio. Dept next week,that should be interesting
I am surprised that a dedicated resp nurse hasn't heard of the flutter. Is she just you GP surgery allocated resp nurse or a hospital based one. I would expect a hospital based one to know but a local GP one may not - she needs to train up though. A resp physio should know about it. And I would have expected your pulmonary rehab physio to know too.
Here in Warks the physios lend me a flutter and suggest I buy one if I found it helped. They do not have the acapella to loan out as it is more difficult to sterilise. It sounds like the Scottish NHS are not prescribing the flutter - but you can still buy one. This may be why the rehab team didn't mention them.
I have bronchiectasis with a 'wet' production. I tried the flutter but couldn't get the angle right for it to work properly so I bit the bullet and bought an acapella (£50). It is great. I did overdo it at first, using it too long and too often, so my lungs hurt. Now I use it during and after physio, and anytime I feel the need to clear out.
If you have a very sticky or dry cough you need to be careful not to strain yourself. And if you have a heart condition you need to be careful too.
Good luck to you nellie15 and hope you get the help you deserve. I have heard of the flutter device and medical people could easily look it up online and get back to you. It is not great if you are not being listened to but you know it exists. Stay strong and don't let them get you down. Take care and thinking of you. xxxxx
I am assuming to diagnose bronchiectasis you must at some time have had a ct scan. I wonder was this ordered by your GP or were you referred to a respiratory consultant? If it was a consultant, why I wonder are you not still seeing con? If not why hasn't your GP referred you.
Having bronchiectasis, as I mentioned before hun, you should really be under the care of a respiratory consultant with a special interest in cf/bronchiectasis. All these problems would be sorted out for you and you will then get the correct treatment. If you let us know a city you have access to we might be able to point you in the right direction, so you know who you wish to be referred to when you ask GP for a referral.
Perhaps you could give your GP this link re Non CF Bronchiectasis Guidelines from the British Thoracic Society - you will need to press ctrl and + a couple of times and even then your eyes will hurt - check out the bottom right page i4 where they mention PEPs and mucus clearance. You might also be interested in page i5 antibiotic therapy.
You will get your 'fight' back. The more knowledge you have the stronger and more confident you will feel. Try and relax over the weekend and from Monday make it your mission to get referred to a specialist who will have access to all the services you need, as at present you are swimming in treacle with your primary care team. Be firm but calm - they are your lungs sweetheart and you deserve the best .
Hello Nellie. I live near Dundee, not to far from you. There should be someone at your Pul rehab able it help you. GP's often don't have much of a clue about devices. There should be a COPD type group near you which meets regularly and people who could help. Good luck. Kathy
I complained to the practice manager because my Copd nurse was useless,everything is such an effort for her( even just typing on the computer). I now only deal with doctors at the surgery.It might be worth finding a better surgery for you.It amazes me ,Copd is the 3 rd biggest killer disease in the world now yet some medics are so uninformed.Keep yer pecker up Nellie we,re all here for you!D.
Good luck Nellie - it's really hard not being listened to by your GP. I find this site a huge source of support and comfort, though, even though I don't post often, because there are so many people finding creative solutions to deal with this problem we all have in common. BLF should be able to help with hte fluttter - hope you have a good coversation with them on Monday. x
I've read all the posts, Nellie. I am glad that Kathiegwanny reassured me that Scotland has still good practitioners. So Nellie, fight on. It looks as though your surgery hs not heard of the internet either! I bought a flutter from Amazon. When I showed it to my consultant, he told me he could have prescribed it for me!
It's on the NHS which is a National institution; so I think this device should be available nationally! Try to talk to the right people, like your consultant. Good luck with it.
I recomended the flutter device, and I don't know if this will help but they have a web sit clement-clarke.com, perhaps you could pass this to the GP if they are not aware of it. I was issued with mine by the Physio for the Thoraic Department
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Just back from seeing GP regarding my breathlessness
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