Fed up!

[Janny17]

New to this group, been unwell with exacerbation of bronchiectasis since before christmas, cannot for dear life get to see a gp! Sure everyone has this problem..

[RibvanRey]

Hello Janny17 and welcome to the group. Nobody gets sick during bank holidays 😊 Do you not have a stash of emergency medical to deal with exacerbations?

As a Bronchiectasis sufferer you should have a 2 week course of doxycycline and prednisone. So that you do not need an emergency doctors appointment. If you do not have these then you aught to ask your GP why not.

If you have taken these and they have not helped you need to get a sputum test to determine exactly what bug it is and which antibiotic your GP needs to prescribe.

Best wishes, Rib

[Janny17 in reply to RibvanRey]

Hi, have had this condition since I was 33, im now 54, gp will not give me rescue pack. Unable to get to see gp so had 2lots amoxicillin from urgent care, despite telling them doesnt work! Followed by 3weeks doxy over phone, sputum samples sent in too. Ended up being sent to hospital last weds for admission, after 6hrs sent home as no beds! Still unable to get in to gp for sick note for work.. hence feeling fed up!

Now taking 10days ciprofloxacin, just feel so lethargic and breathless. Typical after seeing consultant last july doesn't want to see me for a year, though I have rung to ask for earlier appointment.

[RibvanRey in reply to Janny17]

Oh Janny this terrible. The official NHS guide is 14 days of Doxycycline. As you say Amoxy won't work.

Do you have a consultant that you could ring his secretary ? A respiratory nurse?

Ultimately can you change your GP to one with a better attitude.

Rib

[Janny17 in reply to RibvanRey]

Think change of gp is next option, another week of sick leave from work, plenty of rest then hopefully be over this nasty flare up!

Thanks👍

[Hidden in reply to RibvanRey]

Doxy isnot necessarily the right ab in bronchiectasis. My consultant does not like it . Neither does she give steroidsunless asthma is present.I have had bronch for 64 years. I agree that Janny’s treatment is dire. She should have been given 14 days min 750 bd cipro and also have a rescue pack at home.

[RibvanRey in reply to Hidden]

Ithe really is appalling isn't it! I would never presume to judge what the correct meds are for anybody. The point I was making was that NICE guidelines and the NHS own advice to GP's is to prescribed Doxycycline. To not provide neither Rescue Meds nor an Emergency triage for long-term patients in crisis so as to reduce the load on hospitals is both archaic and wrong.

Regards, Rib

[Hidden in reply to RibvanRey]

It makes me furious. Stay well and Happy New Year!

[Sandy- in reply to Hidden]

Hi, I have been fighting an infection for nearly 3 weeks now. I have bronchiectasis and asthma ,took my emergency Amoxicillin which didn’t help. Was then given 2 weeks course of Doxycycline. I’m worn out with coughing up copious amounts of phlegm and my temperature is still not back to normal, nor is my peak flow. The asthma nurse said it was in my right lower lung. I take my last Doxy tomorrow but also have continued with my Azithromycin.

Apparently my early sputum test was clear, but I struggled to produce anything as I think it may have been consolidated. I’m not sure if I’ve had two different viruses but will be calling my GP surgery in the morning. I feel a little better but still very congested and concerned about my temperature.

I know you understand a lot about bronchiectasis Little Pom and copied and pasted this reply to another post.

Hope you push to see. GP or Specialist in bronchiectasis Janna 17 x

[Hidden]

I agree with RibvanRey that you should be seeing your consultant who will tell your GP how to treat you properly. The GP obviously has no idea what they are dealing with. Make sure that your consultant is a bronch specialist. If they are not, find one in your area - usually at large teaching hospital. Insist on a referral on the grounds that your condition is not being controlled properly. Don’t put up with this ignorance. It is your health we are talking about.

[Katinka46]

Welcome to this group. It sounds horrific what you are going through. I can’t help as I do not have your condition but as you can see from the replies there are many here who do and are experienced in managing it. I do hope you can get things sorted out soon.

All the best

K

[cofdrop-UK]

Hi Janny

I am so sorry you are being short changed by your uninformed GP. So glad you have tried to expedite your appointment.

The guidelines state that people with ncfbe should put in a sample but commence on an antibiotic (normally a high dose for 14 days), which can be changed when the results come back if the bugs grown are not sensitive the the one prescribed. Generally steroids are not as widely used as in copd unless we also have asthma, that is not to say they are never used, just not normally in a rescue pack.

There is no rule as to which antibiotic someone with ncfbe should take. It depends on what bacteria you are growing, what it is sensitive to, what it is resistant to and if you can tolerate that paricular drug. eg. During this exacerbation I have presently the bacteria are resistant to Augmentin but are sensitive to Doxy, which is just as well as I am intolerant to so many abs, including Cipro. Amox can be very useful if you are growing strep p.

I am very concerned your GP and surgery don't seem to be clued up at all re BE. They are supposed to be cutting down on abs for the fit and healthy but don't seem to get the fact that by not sending off a sample in your case, you have taken 3 lots of abs and had the inconvenience,not to mention the expence to the NHS of unnecessary visits, just because they didn't see you or give you a telephone consulation in the first place. False economy and very unfair.

Perhaps you might write to the surgery manager, email your consulatnt or make a telephone consultation and explain exactly what happened. This is not acceptable.

Good luck .

cx

[RibvanRey in reply to cofdrop-UK]

Just one point, and it is one mistake many GP's make too, Bronchiectasis is NOT a COPD.

Regards, Rib

[cofdrop-UK in reply to RibvanRey]

Too true Rib.

cx

[Janny17]

Thankyou everyone ☺

[Nanagaga]

You must be fed up indeed Janny......hope you do manage to see your GP very soon.....best of luck...x

[Phil40]

Hi, welcome to this site, it’s very helpful and useful.

Steroids and antibiotics are both in my Mums rescue meds; and she also has steroid nebules that can be used if necessary with her normal Salbutamol nebules depending on the flare up whether it’s an infection or not.

These are both SOP I thought and follow NICE guidelines as I remember.

I care for Mum with COPD and have had a long battle to get the right care in place.

The reason that NICE have stated best practice is to have emergency meds, Specialist Respiratory teams, care plans etc for COPD is to keep people out of hospital, give people the best care pathways and in a pragmatic way save money! Hospital admissions of their patients also cost GPs money from their budget too, I thought.

My experience is that GPs are like any other trade: some are great, some are, well, not great at all. In fact really really not great.

I worked in surgeries and it was eye opening believe me.

When it became clear how badly Mum had been and continued to be treated (I) we made a Subject Access Request for all of her notes, under the Data Protection Act, which they have to provide. ( go to Information Commissioners website, it’s easy. Cost us £15 or something and is a real pain for them to deal with. In fact, I have done a few to different organisations. It really upsets people. )

They stopped messing her around when they knew what I would see and what I could do with the incompetence that was recorded.

Sorry about going off on one but I thought my Mum was an exception in her bad treatment but I quickly realised reading here that she is far from being an exception.

Regards

Phil

[Janny17]

Thankyou all for you advice, its helpful to know th e e are others out there!

[Dedalus]

Hope you get sorted soon,but definitely think you should look at changing your GP. Best of luck and all best wishes x