no nebuliser for me

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well thats another unsuccessful doctors visit over, tried to get a nebuliser for steam/saline inhalation only to be told no! as he did'nt reckon they were any good except for inhaled antibiotics, despite me pointing out that whilst using the shower prompted loosening of gunk, perhaps I need to spend my life in a shower cubicle? losing faith in the NHS

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  • Posted

    If it is any help Amazon do have lightning deals regularly on portable nebulisers. You cannot always see the deals except 24 hours ahead and it is on the deals tab. I think the last deal was around £70. There is a very limited quantity of the deals, so you have to be alert to the starting time.

     

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  • Posted

    David ...that is crazy..I am using my Nebulizer is I write this...I could not live without it...your doctor is full of s***....I inhale something to loosen the mucus and them Albuterol Sulfate with Ipratropium Bromide...They come six small vials to a package...These two items are not expensive either....You just need a better doctor....I cannot believe he told you that...I just asked my doctor to write me a RX for 2 more machines...one for backup & the other one to take with me when I go to someones house like for a party...Your doctor is understanding  how difficult this is....so sorry...
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  • Posted

    Hi David,

    Your doctors surgery is like many surgeries, they are working on a tight budget, they know very little, if anything,  about bronchiectasis, so unwilling to prescribe "kit" that could help you! Short sighted of them!

    Is there anyway you can ask your respiratory department or your consultant to write to your doctor outlining what, in his opinion, needs to be prescribed to assist with your bronchiectasis?

    Mind you I have been trying to get an acapella device on prescription and was told it was a "red" item and could not be prescribed ..... plus my doctor had never heard of it!  My respiratory dept send my doc a fax requesting the item for me, but again it was still "no".  I have purchased this myself and am resigned to the fact that there is no money in the NHS for us! But  I will keep trying to get help, as I have paid into the NHS all my life, (quite ancient now!) .... it really shouldn't be this difficult! 

    Wish you well.

      

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    • Posted

      hi Trish, thankyou for your post, yes it does seem very unfair here in the UK that despite paying taxes all your working life to fund the likes of the NHS we get a slap in the face when we need help in our old age, so far Ive worked 45 years here and still do, albeit part time now. I know these nebulisers are available to buy, but it's a question of affording it in the 1st place. I have said it before and will say it again, you get better treatment in the UK if you are a sick animal, disgusting but true. Wishing you all the best Trish smile
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    • Posted

      Hi David,

      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.  

          

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    • Posted

      hi Trish, 

      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.

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    • Posted

      Hi David

      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

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    • Posted

      Hi Cofalot,

      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.

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    • Posted

      This makes me so cross trish - it doesn't make sense that one surgery can do it and another can't, especially when it has been requested by the hospital.

      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

       

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    • Posted

      Hi Cofalot

      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.

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    • Posted

      So pleased you have an appointment with physio.  You might want to think of all the questions you have and write them down but only in bullet points, or you will get lost as you are talking.  Same goes when you see con.

      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

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    • Posted

      Hi cofalot

      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.  

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    • Posted

      Hi David,

      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 smile 

      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

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    • Posted

      That is much more positive all round.  Pleased your physio appointment went well and here's to good future management.

      love cx

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  • Posted

    Hi David

    Like many of the other replies, I am not surprised by your GP's response. Over the years, I have found that I have ended up knowing more about this conditions, and the interaction of the medication than many GPs and nurses! It is a sad state of affairs when you have to remind a nurse or a doctor NOT to give you some medication which will contra some other that you are already taking.

    The same is true of nebulisers. NHS is driven by budgets and profits. I have been bounced between the hosital wanting me to have some medication and the GP refusing to prescribe it because of budgets.

    I wouldpush the hospital for a nebuliser if they think it will help.

    Take care of yourself, and stay well.

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