Update from last post regarding sputum results antibiotics & more..

[Otto11]

Hi everyone just an update as I finally got my GP appointment this morning.. He had the letter from the 13th January from the local Respiratory Consultant on his screen. He said look we have received this letter & the consultant suggests a course of antibiotics. I told him that letter was dated 13th January & I had already seen it on my NHS App & as going away I called 111 & arranged it myself. His response was oh that's good. No apology that iv'e waited another 3 weeks. he never asked if I was still coughing up gunk & to be honest it is less but still he didn't follow it through.

I said that I am supposed to be given 14 days of antibiotics & to have a sputum sample done each time I have an infection to make sure I am taking the right antibiotic. He waffled for a while then said as your Bronchiectasis is mild that's not necessary. I asked about the repeat sputum samples that the Consultant had asked him to do after the antibiotics in her letter but he said that I had had the antibiotics so just to wait for the hospital appointment to come through. I said I had received a letter to say there was a 36 week wait. His response was yes they are very busy. I give up. I said it looks like I have been referred to 2 different hospitals. He said he had left that for a secretary to arrange so he didn't know. So I'm no further forward. He said to make an appointment for 3 months. Watch this space!

[Swizzy]

These GPs make me want to spit tacks. The lazy ignorant beggar obviously knows nothing about bronch and can't be bothered to find and follow the guidelines. You know more than he does! You need the management that you described to him to prevent your bronch from getting worse from more lung damage. By refusing to follow the consultant's requests he is deliberately neglecting your needs. You should not have to wait for the next consultant appt to have the sputum tested. It needs to be done now in case.you need more antibiotics. I do feel that you should talk to your practice manager, uttering the words 'formal complaint' failing that, call the consultant's secretary. Tell them that GP is refusing to follow consultant's instructions ( it should have been in her letter) and ask if con can write strongly yo GP to do what is requested.

[Turnipgirl in reply to Swizzy]

Its extremely frustrating isn't it when they fob you off!

How's things with you anyway?

I just want to say thank you to you for having been a great friend to me when I was harassed by that incompetent letting agency at the old place when you told me to write to them and put in an official complaint!

I had told them how if they wanted to evict tenants then they go through the legal process and how harassment isn't part of that when they tried to bully us but were unsuccessful out of the place to avoid going through court to get us out by claiming we hadn't paid the rent and yes we had as it was there in black and white saying yes it was paid both in full and on time!

Things are fine now in my new place now time has gone by!

[Swizzy in reply to Turnipgirl]

You were very brave in tackling those awful people. It is lovely to see that you are doing so well now and great when we hear news of what you are doing. I am not the same since I was so very ill in 2023 which is very frustrating but still soldier on.

[PaperQueen in reply to Turnipgirl]

I'm pleased that it all worked out for you in the end. xx

[Turnipgirl in reply to PaperQueen]

Friday just gone I received an e mail in the evening saying that the sports centre I went to for 3 years has closed down and gone bankrupt and even though I wasn't surprised when I was told it was still a shock though!

It was a good job though last Friday that I booked the swim at 9am and not at 5pm as that really really would have hurt a lot harder thinking I was getting a swim at 5pm, going up there only to be told no I wasn't as the place had closed down!

[Otto11 in reply to Swizzy]

Thanks. I don't currently have a consultant unfortunately. I had 3 years monitoring for lung nodules from 2017 which finished a few weeks before lockdown. the last CT showed mild Bronchiectasis. I had a couple of phone appointments during lockdown & then discharged. The letter said just to treat as Asthma but to follow the guidelines for antibiotics etc. I'm currently waiting to be re referred to either that hospital or my local hospital which is where my GP asked for advice & that consultant replied in her letter. I'm now not sure what is happening as I seem to have been referred to 2 different hospitals. I have a phone call from my Rheumatology nurse on Thursday ( they were the ones who found the first nodules) so I will ask her whats happening. I'm then going to contact my surgery about these repeat sputum samples. Why is nothing straightforward?

[Swizzy in reply to Otto11]

I'm afraid that we bronchs have to be extremely pro active in our own interests and vociferous in sourcing the right treatment. It's no use waiting for someone to refer you. They just won't. Bronchiectasis is made little of by doctors who do not know what they are doing and this leads to no / bad management of the condition.. which is what is happening with you. Take it in your own hands. Find a good bronch specialist and INSIST on a referral

[Otto11 in reply to Swizzy]

Thanks. The Respiratory consultant I was under for the Lung Nodules was at a large teaching hospital so I would expect them to have a specialist. the problem is that I don't want to make too much fuss as it's mild according to that consultant & he discharged me saying just to treat as Asthma & if rheumatology had any further concerns they could arrange a Lung function test.

I'm speaking with my Rheumatology nurse tomorrow so will ask her advice. The strange thing is that there is another hospital in the trust that seems to have Lung specialists too. I'm not sure why that would be but will ask if a Bronch specialist would be at a different hospital to a normal Lung consultant. TBH when I wa first referred for the Lung Nodules my appointment was in the Intestitial Lung disease clinic. It was really scary. I asked the consultant why I was in that clinic but he said he didn't know. He never moved me though to a different clinic. I think its all messed up & needs unravvelling. I will do as you say & do some investigations of my own. Thanks again.

[Swizzy in reply to Otto11]

Not every hospital has a bronch expert and quite frankly any respiratory consultant who dismissess your bronchiectasis as mild and tells you to treat it as asthma , which is a completely different condition, is displaying their ignorance. I do hope that you get under the care of a bronch specialist because they are the only people that understand its complex nature.

[Otto11 in reply to Swizzy]

Thank you. I have been referred to Respiratory so I will be going back to the original team I was under before. The radiologist reported mild Bronchiectasis but the consultant said he couldn't see it hence the confusion & my being discharged. My Rheumatologist says even if it's radiological it's still a diagnosis. Then when I started coughing coloured sputum up later that year the GP said it's the Bronchiectasis & wanted to prescribe Azythromycin x 3 weekly. I said no not until he had spoken to the consultant. He asked for their advice & I was prescribed Carbocysteine instead. The worst of that was that the Azythromycin has an effect on my Epilepsy medication which had to be increased & then I wasn't put on that medication but could no longer reduce the dose. Thank you so much for your input I will start my search tomorrow.

[Turnipgirl in reply to Otto11]

I admit I get myself extremely frustrated when I don't get straight answers to simple questions myself!

[Otto11 in reply to Turnipgirl]

Thanks, Me too. I like things to be in the right place with a correct plan in place.

[B0xermad]

Hi otto sounds like you are being fobbed off with the gp,I always have been given sputum pots and a pathology form to put a sample in from respiratory department usually physio nurse if a flare happens after seeing my consultant. I would definitely email or call your department to request a form and bypass the gp

[Turnipgirl in reply to B0xermad]

That's what GPs are good at isn't it fobbing people off!

If you're not happy with what you're being told ask if you can see a colleague for a second opinion!

[B0xermad in reply to Turnipgirl]

Definitely right

[Otto11 in reply to B0xermad]

Hi I don't currently have a consultant or a nurse to e mail or call. I was diagnosed with Lung Nodules & monitored for 3 years with CT's then the last CT showed mild Bronchiectasis but it was a few weeks before lockdown so my appointment was cancelled. I then had a couple of unexpected phone calls ( not planned) during lockdown & was discharged in 2022 & told to treat it as Asthma but with the understanding for a rescue pack etc etc. I have been referred back to Respiratory by my GP so just waiting for the appointment to come through. My NHS App says currently 13 week wait at that hospital. It all needs sorting out & my GP seems to be leaving it all up to them when they see me.

[B0xermad in reply to Otto11]

I hope you get an appointment sooner

[Otto11 in reply to B0xermad]

Thanks. Me too.

[Tinker26]

My consultant allows me to bring a sputum sample directly to the respiratory team at my local hospital and I have various rescue packs of antibiotics to start and I also have mild bronchiectasis!Be persistent and speak to your consultants secretary

[Otto11 in reply to Tinker26]

Thanks for your reply. I don't currently have a consultant. I was being monitored from 2017 for Lung Nodules & the final CT showed mild Bronchiectasis. This was just a few weeks before lock down so my follow up was cancelled. I had a couple of unplanned phone calls from a consultant during lockdown then discharged in 2022 & told to treat it like Asthma & told my Rheumatology team ( who first found the nodules) to repeat lung function tests if they thought necessary. I have just been referred by my GP back to Respiratory but it's a 13 week wait. I just need a plan in place & some advice.

[PaperQueen]

I am spitting feathers on your behalf Otto! Your GP needs a bomb putting under him. How can he be so blase? Grrr. Swizzy's advice sounds good, I would do that if I were you. Best wishes. Sally xx

[Otto11 in reply to PaperQueen]

thanks. As it's supposedly mild I don't want to make a fuss. I have a phone call from my Rheumatology nurse tomorrow so am going to ask her. Why Respiratory are asking Rheumatology to check my lung function if they think necessary is beyond me. It all needs unravelling as my care is in 2 different trusts who don't share data. My GP is not in the same area as my Rheumatology or past Respiratory teams.

[Tinker26 in reply to Otto11]

They told me mine us mild however I still ended up in hospital as Swizzy aka Littlepom has said in the past "bugs have a party in your lungs abd before you know it you become quite ill " please be vigilant and don't take no for an answer 🥰

[Alberta56]

This sounds so confusing. I hope you can sort it. xxx

[Germantara]

It's terrible there's a load off things I could rant about but I better not