no nebuliser for me

Forgot to say (its my age!)  my doc surgery did say if I bought a nebuliser myself they would provide the sachets that go in it! Couldn't make it up!!! As you say, all very well if you can afford these things!

Apparently I am the only patient with Bronchiectasis at my doc surgery, so I am on a mission to get them up to speed with what its like to have the disease and they certainly know me by name now.  

yes it would appear that I am the only patient with bronchiectsis at my surgery too, when I ask certain questions they consult their computer for advice, quite probably this site! I must ask the question that if I do buy a nebuliser would they provide the sachets that feed it, I'm sure this saga has the foundation for a novel tracing the ups and downs of my battles.

You really do need to check with the surgery if they would prescribe the medication, otherwise it would be pointless buying a nebuliser.

Personally I would not ask my GP but would ask consultant if she/he feels a nebuliser would be of benefit.  Usually, especially if you go to an adult cf unit the con would arrange for you to have one on loan, the benefit being the equipment pool at the hospital maintains neb annually and you are also provided with new packs of tubing, cups and mask or mouth piece.  Defo speak to your consultant.  Con would also advise GP on medication to be used.

I am shocked many of you have probs getting PEPs (flutter or acapellas) on prescription.  You have been able to get the flutter for a while and the acapella more recently, although it does seem many GPs don't seem to know this.  I have had both from the hospital, bought a few acapellas myself and had 1 so far on prescription.  I don't know for the life of me what "red" is!  Again I would have a word with con or physio at the hospital re PEPs.

We defo are the orphans of the respiratory world!  It is either a post code lottery or many medics are very ignorant of the guidelines for non cf bronchiectasis.  

Good luck     cx

I was informed that "red red" was an item that could not be prescribed as it had not been proven to be of use (no trials done??) and that there was no funding for this item.  In fact my doc surgery was told categorically they could not prescribe this on NHS!  I did have a company willing to prescribe the acapella if my surgery produced a prescription .... needless to say my surgery said "no"!  As for the respiratory dept at my hospital they requested my doc prescribe acepella ... answer still the same.... NO!  Apparently there is no funding and this item could not be prescribed on NHS.

The 'red red' is a fob I feel.  If they didn't prescribe anything which was not trialed specifically for non cf bronch, there are medications we would not be able to have at all, eg: hypertoic saline - there were trials for CFers but not for non cf bronchiectasis.  There are some meds which we can't have as non cf bronchs which cfers can of course, but it seems PEPs are not one of them universally but a decision made by individual surgery, otherwise some of us would not have them.  Such a shame.  Hope you have more luck when you next see your con.

cx

Don't see my consultant for 6 months so will see how it goes,  My initial appointment with him was a matter of minutes to get diagnosis, a leaflet and was told look at the internet as it has lots of info.  End of consultation which I had waited over an hour for!!!  So really don't hold out much hope.  I was told in May 2015 that physiotherapy would be 3 months delay!  I have been contacting them on a weekly basis and really made a nuisance of myself with the result they telephoned me this morning with a cancellation appointment .... needless to say I am taking it with the hope that once I get in the system things will improve??  NHS seem to be overstretched staff wise, and definitely dont seem to have any funds.

Sorry you don't seem to be having muchg luck with GP or con.  May be good to check out your respiratory consultant online to see if he has a special interest in cf/bronchiectasis - it makes a difference.  They are usually to be found in the main where the hospitals have an adult cf unit.  You can pm me if you wish with a large city you have access to and I may be able to let you know of a unit and con. Hope he gives you more time next time.  If that was your first appointment you should have had extra time.  

Good luck - let us know how you get on at physio - if you ask physy to show you the PEPs, she/he may actually let you have one.  Fingers crossed.

cx

Well I have had my physiotherapy appointment and am reassured that there is some help for me!  I took the acapella device I had bought and she showed me how to use it and put it on the correct setting. My chest consultant actually lectures in respiratory medicine and has an interest in bronchiectasis.  He is spreading himself too thin and is always trying to catch-up, hence my rushed initial appointment !  The physio was very thorough and pointed out that I had got into a bad habit of hyperventilating, causing me to feel faint etc!  Must get out of this as not good! She has booked me another appointment in a month and has given me her contact number if I have any problems, couldn't believe it. She is going to write to my GP with what she wants to happen! So heres hoping that he listens to her.  Feeling more positive.

All the best to you and thanks for your response.  

Hope you are having a better day today?

I have had my first physio appointment, (they had a cancellation) see my response to cofalot for details.  I am feeling more positive about things ..... hope it lasts  

My physio did say they sometimes lend out nebulisers to see if  it helps, so you have it, say, for a month and report back to them.  Sorry, cant remember if you have had physio yet (prob not!) but they seem to be able to steer Gp's in the right direction?  Will see ... but she is writing to my GP stating that I should have 14 days of antibiotics on standby not the 7 days he has given me. 

All the best to you

love cx