Hi everyone I’ve been lurking in the background for a while but havnt introduced myself properly. Please bear with me as it’s a bit long winded & confusing. Basically I don’t know what to do & need some advice please.
I have RA diagnosed over 20 years ago & in November 2017 on screening for new Biologics for my RA my chest X Ray showed a small mass. I was given a High resolution CT & referred to a Lung Consultant. The results showed small vessel fibrosis & a further CT in 6 months was planned. Somehow I received a further CT appointment for March with my first appointment with a Consultant in April at an ILD clinic. He explained the mass was a nodule & said he had no idea why I was seeing him in the ILD clinic & would repeat the CT in 6 months which showed a much larger nodule in one lung & a cluster in the other plus ground glass effect. A further CT was requested for 3 months time. This one showed the ground glass had gone but the nodules remained. Again CT in 6 months requested. This one showed more ground glass everywhere plus a new 7mm nodule. Planned CT for 3 months but in the meantime I was admitted to hospital with a chest infection in November 2019 which I later was told was Pneumonia. I saw the Consultant on discharge & he arranged a further CT for 3 months. I was admitted once again with a further chest infection prior to this in December 2019 which I was later told was Pneumonia that had not resolved. My next CT was in February 2020 & then I had a call from the secretary to say my Consultant wanted to see me. Then Covid struck & all appointments were cancelled. I never received the results but in April I had a call from my Rheumatology nurse to say there was a letter on my notes saying that the CT showed Bronchiectasis & they needed to see me! Well I knew nothing about it so was pretty upset & not sure what to do. I then received a letter in June from the Consultant to say I only had Asthma & that he would do one final CT later in the year & then if the nodules were stable would discharge me. I then received a further letter in October 2020 to attend for an X-ray & said my last CT showed I still had Pneumonia & that I had had infections on every CT & treated with antibiotics which was not the case. It said the Radiologist reported Bronchiectasis but he didn’t think so. I had the X Ray in November then a phone call unexpectedly in January this year from the Consultant to say I’m complicated & that I have inflammation here there & everywhere. I told him I was coughing up phlegm every morning which he thought was reflux & said he would call in 6 months. In March I sent photos to my GP of the green sputum I was coughing up daily & he prescribed Doxycycline daily. I asked him if he should discuss this with my Consultant first.
In the middle of all this & after 5 years of funny turns I was eventually diagnosed with Epilepsy last November. I was aware that if I am on antibiotics then the Epilepsy meds are not as effective so contacted my epilepsy nurse who increased my dose.
In April my GP had a letter from a respiratory registrar to say they didn’t want me to start on Doxycycline but prescribed Carbocysteine & would arrange a phone appointment with a nurse to explain how to clear my lungs. I then was able to reduce my Epilepsy meds dose
Since then I’ve had Covid in August & now another virus which had badly affected my chest & ive done a PCR today as it feels just the same. I’ve had several courses of antibiotics this year prescribed by my GP over the phone. They are currently refusing to see me till the test results are back. I did a lateral flow test on Monday which was negative but apparently that’s not reliable enough.
The Carbocysteine are working really well & im managing to cough up sputum much more easily as it was dreadful before.
But now what? I havnt been seen since I was diagnosed in Feb 2020 & im struggling with no help from my GP at all. One minute im told I only have Asthma ( which I’ve had since childhood) then I’ve got inflammation then Bronchiectasis then I havnt or he doesn’t believe I have. But I really feel I need to be seen & im even wondering about asking for a second opinion. I totally understand the effect Covid has had on Respiratory appointments which is why I havnt so far contacted them as I don’t want to be a nuisance. Im currently in bed coughing like crazy feeling awful since Saturday.
I just wanted to ask what you would do in my situation. Should I push to be seen? My notes now say I have Bronchiectasis on them. I don’t even know anything much about it as havnt had the opportunity to speak to a dr.
Im sorry this is so long but wanted to paint a clear picture. Thanks for listening & for reading ( if you managed to get to the end ) 🤪
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Otto11
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Otto, I wouldn't like to comment too much on your conditions because I'm rather new to this world of lungs, but I will comment on what seems to have been a confusing, frustrating and generally very difficult time for you.
In your shoes, I would definitely ask for a second opinion. I wouldn't let the weight of waiting lists get to me too much, because you need explanations and answers, and where necessary appropriate. monitored treatment.
Second opinions are available under the NHS and need not be in the same hospital, or even area. You can also ask to be referred to a Consultant of your choice.
I was told exactly this when I was struggling to get to the bottom of a tricky situation and was left livid by a Consultant sitting back in his chair, hands clasped in his lap, stating "I doubt we'll ever get to the bottom of this" after one consultation and a simple blood test.
I researched the available options, and fortunately a Doctor friend of mine mentioned a name, when I asked who she would see in my shoes. That Consultant has been excellent, and really worked hard to get to the bottom of things, and prescribe (quality of) life-changing medication, despite it being expensive.
Otto, it strikes me you deserve better than the predicament you find yourself in. I hope you find a way forward soon.
Thank you so much for taking the time to read my lengthy post & for your response. I know you are right but I think I just wanted the back up of others that they would do the same. I find myself constantly not wanting to be a nuisance & push for better care. My GP makes me feel like a drain on them ( not the NHS) & often refused to refer me for things which turn out to be serious. I’m glad you have also sourced a better care plan which suits your needs. Thanks again & take care x
Otto - the harsh reality is never before has it been more important for us to be strong advocates for our own care. I detest the word "entitled" because it sometimes suggests an unreasonable request. I don't believe for one nanosecond your request is unreasonable.
If you are uncomfortable about a phone call with your GP to discuss your request, and needs, then do consider writing to him/her. When I have something a bit more complex to discuss I'll do that, because that way I can be sure to "say" everything I need to and not be deflected, or forget "in the moment". That document is scanned and therefor also becomes part of your medical record, so no "misunderstandings" about what is required.
It might take a couple of attempts to get the letter right, but that's the power of a computer. You can edit and alter to your heart's content, without having to go back to the beginning.
Thanks that’s a good idea. The GP I’ve been allocated is the one who has told me for the past 5 years that my seizures ( we know now) were panic attacks anxiety or I was depressed& required meds. I refused them obviously. I can’t bear to look at him tbh I’m so angry with him. I gave him a hard time over the prescribing Doxycycline issue without speaking to Respiratory team. I try to avoid our surgery. Oh well I won’t know if I don’t try. Thank for all your helpful suggestions.
It sounds like a discussion has the potential to get "emotional", and that's never a great situation.
A letter takes all the emotion out of a conversation, but I would suggest if you do elect to go down that route, that you write your letter then sleep on it and re-read. That'll give you a chance to read what's written (rather than what we think we've written) and to reflect to ensure you haven't missed anything.
Of course, there's likely to be a discussion at some point, but at least you will have had the opportunity to make your point in a non-confrontational manner, and he/she will have the chance to reflect on their own actions.
Go for it. You deserve professional and compassionate care.
That makes a lot of sense as I do get extremely emotional recently as had a lot going on especially last year with little or no support. I could write a book of all the errors. However all your suggestions are really helpful & I will try to be calmer. Thank you for all your input.
MMaud, great point re writing to the GP. The patient must be careful to not be emotive or critical about their care, just basic facts is what is needed. I have worked as medical secretary and know that busy GPs want to know about a factual medical condition or situation. I have started emailing my surgery, knowing that it is recorded onto my medical records.
YummyBear, personally, I think it's fine to be critical if we feel our care has not been good enough, but what we shouldn't do is rant, or level personal insults at HCPs.
Criticism, based on fact is fine. How else does anyone challenge anything?
What a shambles! I am not going to comment on the awful history that you have laid before us except to say that it is a sorry indictment of the lack of knowledge of so called respiratory consultants and a shocking display of the failure to be able to read scans or treat long term lung conditions.Tear it up and start again.
I have had bronchiectasis for 68 years, since I was three. It is a complex condition which requires specialised and variable treatment and a large degree of self management. Given that, with proper treatment it is possible to live a full and active life without frequent exacerbations (infections) or hospital admissions.
RA and long term asthma can both result in bronchiectasis. Something which seems to have been ignored by those attempting to diagnose your current problems.
If you do have bronch you will need to be under the care of a bronch specialist. GPs know nothing about it as their training is in copd. Your GP will need the advice of the specialist regarding antibiotics. Mine have always been grateful for that and cooperated well.
General respiratory consultants know very little more than GPs and do not see many cases of bronchiectasis.
My main relationship is with my specialist, her nurse and her secretary. My GP just prescribes my emergency abs which I keep at home.
For the benefit of your health you need to be pro active. look on the internet for a specialist near to you. They are usually at large teaching hospitals. Find a name,take it to your GP and INSIST on a referral. You cannot afford for these people to keep messing you about with their ignorance. If it happens that you do not have bronch the specialist will recognise this and is so highly qualified that they will be able to make any other diagnosis or pass you to the right specialist. There are several people on this forum who followed that advice and will tell you that the difference in treatment from a bronch specialist compared to a general respiratory consultant is startling.
It's hard work getting the best for ourselves but there is no other option than being vociferous in sourcing it.
Oh thank you so much for your response. How awful having this condition from such a young age. Your input is exactly what I needed to hear I’ve just now got the issues in attempting to implement a plan. My GP is useless & there isn’t another locally so we are basically stuck with it. Due to not being diagnosed with RA locally over 20 years ago I travel to a larger teaching hospital 25 miles away for Rheumatology care & as they did the Respiratory referral that too went to their Trust. Unfortunately their system is different to that of my local trust & therefore cannot share information making the whole situation even more confusing as you can imagine. Things are changing though & I believe my GP can access blood & scan results now. Although when I told my GP this a few weeks ago she was unaware!I have already looked into Bronchiectasis specialists at the same hospital trust but they are in a different hospital within the trust. I may give the hospital a call but whether my GP will refer me to that trust is another matter. Also when I was referred to Neurology 5 years ago I was given an option of 3 hospitals to choose from. I chose & after an EEG he said it wasn’t epilepsy but would like to do more tests but as I lived out of area the trust wouldn’t fund them! Hence I had to wait till things got a lot worse 🙁& scared similar may happen again. However nothing ventured nothing gained. I know you are correct about fighting my corner I just needed reassurance I guess that I’m doing the right thing. Take care & thanks again x
You have the right to go to any Trust you want for specialist care. They just try to blow smoke in your eyes to save money ir because they are lazy. People go to the Brompton in London and to the QE in Bham from all over the country.Stand up to them.
Before my bronchiectasis was diagnosed my GP just kept giving me 5 days of antibiotics every time I had an infection, but my daughter ( a doctor) told me she thought I probably had bronchiectasis and recommended I go see the consultant in the 'cough clinic' at Leicester. This was some distance away from us and my GP flatly refused saying he 'couldn't' do that. Luckily I had already emailed the department and was told there would be no problem seeing me, my GP just had to write a referral. When I told my GP this he just grumbled and said the referral wouldn't do any good anyway! I said, well we won't know will we unless I go?Long and short is that Leicester diagnosed bronchiectasis and asked my GP to order a CT scan to confirm and then refer me to our local bronchiectasis department. Again he tried to not do this...firstly saying it wasn't in his remit to order CTs ( I said I thought it was), then saying it's a very high dose of rays, ( I need a diagnosis so that I can be treated properly!). Eventually I got there. Now under an excellent team at hospital, GP retired and I have a young chap who is happy to follow hospital's advice.
I’m sorry you had to go through that with your GP but pleased you have had a good outcome. I expect I will have similar problems with my GP. I’m going to have to toughen up.
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Well done your daughter for pointing you in the right direction and good for you for standing up to your ignorant lazy GP and making him do his job. I'm so pleased that you found the right people and I hope that your story encourages others to be vociferous in getting the right help.
In addition to the last answer you can always phone the secretary of the bronch specialist you want. Explain that you seriously need their help and ask if they wd be happy to see you. Then you tell your GP that they are willing to have you and get them to refer you.
Thanks again. Do you know how you go about accessing reviews? I will have to do some investigation first I guess. I think there were 3 consultants listed.
Read their profiles very carefully. Go for the one who specialises in bronch rather than 'has an interest' in it. Also how long they have worked in the field and who they worked with. Were they with a specialised unit before they became a consultant. Unfortunately we don't seem to have a Trip Advisor for Doctors. It would be a good idea.
Not easy fighting your corner so I wish you all the best in getting specialist care. Would certainly make it less difficult if you had a much more helpful and supportive GP.
So sorry to read about your saga. I went through a series of appointments and misdiagnoses before I had bronchiectasis diagnosed. I saw 5 different doctors in the Respiratory clinic at the hospital over time, and yes, for ages they said asthma, and acid reflux. I eventually read I had bronchiectasis in a letter to my GP and had to google it, so was shocked. However, I now have excellent care. Firstly, as soon as the sputum begins to turn a nasty colour, I take a sample to the GP to be tested. Then my local hospital referred me to the Brompton where I received excellent advice, particularly from the specialist physio. I am now under the Respiratory Consultant at my local hospital. He is a caring thoughtful man. I have the condition well managed and I have had 6 monthly phone appts with him during Covid. Good luck. Do hope you get sorted.
Thank you. Im not sure what I should expect & with Covid I feel I shouldn’t be pushing to be seen. But I will do some research & make some calls as my GP won’t have a clue. I’m so pleased you are getting such good care. That’s all we ask for isn’t it.
Otto, whilst COVID has been a dreadful time, and brought additional challenges to the NHS, and those who work in it, it did not stop people needing care for other conditions.
When my GP refused to do or facilitate a set of blood tests in preparation of the specialist clinic, I called the clinic involved to ask if there was any point in the review taking place. Erm,...... the Consultant nearly exploding, with a retort of "there's more going on than Covid, and people should not be sacrificing themselves."
Shortly after, my GP rang to say my blood papers were ready for collection.
Littlepom has given you the excellent advice and you need to follow it up. I have vasculitis another autoimmune disease and am treated by a specialist hospital at a different trust. My consultant sent me for a ct scan and I was diagnosed with Bronchiectasis. I was referred onto the respiratory doctor that specialises in vasculitis at the same trust. However when I was really ill and needed iv antibiotics he asked the Bronchiectasis specialist at my local hospital to oversee this which he did together with his excellent specialist nurses. . He also looked after me when I was last in hospital. My respiratory doctor at the other trust stills sees me regularly but referred me back to my local one if necessary. This is my long winded way of saying you can work with more than one trust. I work with three. Communication is via snail mail and you have to be proactive. Forget your GP he will need guidance on what antibiotics to give you and should arrange for sputum tests if necessary. Good luck and don’t be fobbed off. 🤗
Thanks. Yes my care is disjointed that’s for sure. Rheumatology Dermatology & Respiratory at one trust but different hospitals & Neurology locally along with any emergency issues. All hospital admissions have been local ones mainly for IV antibiotics. I don’t find it easy being the go between but with technology things are improving.
Littlepom is absolutely right! I also have rheumatoid arthritis and asthma. I have been having issues with loads of catarrh and am constantly coughing it up. This has been going on for months. I went to my GP several times, was given antibiotics which didn't resolve the issue. Went back to Go and she prescribed Carbocistene which made it easier to cough up but obviously didn't resolve it. Back to GP ( all by phone) and told her I wanted a referral. She didn't argue and did so. Local hospital respiratory doctor rang me and we had a long conversation. He suspects bronchiectasis and is arranging blood tests, sputum tests and CT scan. Fortunately for me he has a lot of experience with bronchiectasis and spent a lot of his time at the Wythenshawe Lung Centre dealing with bronchiectasis patients. He's told me to continue with the Carbocistene in the meantime. He also said that people with rheumatoid arthritis quite often develop lung issues but if it is bronchiectasis it can be controlled with the right treatment and monitoring. Don't hesitate. In your post you have given a good catalogue of what has happened so far. Just adapt that and email it to your GP and current respiratory doctor or post it but add that you want to be referred to a bronchiectasis specialist so that you can get the all round care that you need. Good luck.
That’s an excellent idea. I think it’s so much easier having it written in a list rather than them trying to access various letters & scan results on the computer from the past 4 years. I have it all on my computer so will be straightforward for me. Thank you for that.
Hello Ott11I am sorry to hear about everything you have been through.
If you feel you would benefit from a chat with one of our specialist respiratory nurses for advice about your lung condition, you are very welcome to give us a call on 03000 030 555. We are here 9-5pm Mon- Frid.
Otto11, I have just phoned BLF, a nurse will ring me today to answer my question on what are the NICE guidelines to follow up a Bronchiectasis patient, as I have had no contact in 18 months. My bronchiectasis was diagnosed as being mild but nevertheless, I thought someone would check. I don't like to bother the GP, hence I rang BLF.
I had a good 25 minute call from a BLF nurse, which was very informative. I became aware that the nurse knew of the demise of our surgeries and the issues patients are experiencing. She told me to read the NICE Guidelines online for Bronchiectasis (they advise Bronchi patients should be checked annually and at any time a flare-ups occurs, to give a sample of sputum to the surgery to be sent to the Lab. Also, to read: bronchiectasishelp.org.uk
That’s great. Thanks for the info. I will call them this week I think. I hope the yearly check is with hospital & not GP as my yearly Asthma & Rheumatoid review by GP have not yet happened. Will check out the website x
Good luck with pursuing the treatment you are entitled to. I practically died before my former surgery thought of referring me to a respiratory specialist. Like you, I 'don't want to be a nuisance', so am useless at standing up for myself. I now think 'what would Littlepom do?' Mmaud is another good mentor. I am much comfier now my bronchiectasis has been diagnosed and I've got a regime to follow. And friendly respiratory nurses to consult if needs be. I hope it won't belong before you're the same xxx
Thank you. I’m pleased you are getting good care now. It’s scary & in these current times not knowing what to do without help is so hard. Well done for being proactive.
Hello Otto11, I read your history with interest. We are in difficult times with the huge demand on the NHS and I find a lot us have to get by with self-managing our own healthcare needs, due to time restraints on professional medics. Having had an intermittent irritating cough following a cold for 37 years (after having whooping cough aged 37), I was eventually diagnosed in 2020 by an HR CT chest scan. I chased the result 5 months after the scan and a GP searched hospital scans to find result: mild bronchiectasis. After another 4 months I had a call from Chest Community Clinic to go through what to expect when I had a flare-up and was sent a leaflet outlining breathing techniques. The Community nurse sent a letter to my GP to prescribe a rescue pack of antibiotics to use if I suspected I had a chest infection during a flare-up. I occasionally use a facial steamer to inhale steam, to help clear lungs. I know it isn't ideal to self-manage healthcare but if you are generally poorly, then seek further advice from your GP. I have found using the Internet to be very useful to gain information on Bronchiectasis. Wishing you well.
Thanks. Yes you’re right I’ve been doing some research & now decided it’s time for action just need to put that into practise as I can’t go on in this mess & uncertainty of what to do & when to do it. I rang our GP’s on Monday & a dr said don’t take antibiotics it’s a virus over the phone. They refused to see me without a PCR test which I’ve now done & is negative.
Apparently they do but they were wrong. After a negative PCR eventually on Friday am I saw a primary health practitioner who listened to my chest & yes I’ve got an infection so been given 14 days of Amoxicillin. And they asked for a sputum sample too. I was so angry & upset too as these could have been started on Monday. I asked to speak to a manager & they let me ( that’s a first) & after going round in circles regarding Covid policies & not seeing patients without PCR tests I left as I was failing miserably to get my point across. However she called me in the afternoon to say they will put something on my notes for future & has arranged for a GP to call me on Friday. So have eventually got antibiotics on Saturday. X
I'm glad you got the antibiotics at last. If Amoxicillin doesn't work you will need something stronger. There are some nasty bugs which it will knock back, but not kill completely so they sneak back. It sounds (hopefully) as if the surgery thinks that you are not a woman to be messed with. You really do need a referral to a bronch specialist. xxx
Let's hope you achieve something positive this week. I'm sure you will write down all the pertinent questions to ask and get done what is best for you. Such crazy times we live in, with an abundance of patients seeking help. Many of us would never have believed 18 months ago we'd succumb to self-managing our own health issues, due to the pandemic!
Awh thank you for asking. I have a call from my GP on Friday. It gives me some time to put things together. I’m currently trying to decide which route to go down. Thanks.
Hi I'm so sorry it has taken me so long to respond. I've been really unwell since a virus in November which was when I wrote the original post.I did some research myself & found that there was a specialist unit at another hospital in the same trust as where I currently see my Respiratory consultant. I called them & spoke to a nurse who was really helpful & explained about the Unit which is predominantly a Cystic Fibrosis Unit with Bronchiectasis Clinics running alongside. She advised me re referral. I then received an appointment for a phone call with my Respiratory consultant so as well as plenty of other things to discuss as its been a while since I last spoke with him, I asked about transfer to the specialist Bronchiectasis unit but he said no & that the only reason they would refer was if there was no obvious cause for my Bronchiectasis ( he said mine was caused my RA & or Pneumonia) or that it was not under control. He decided to see me in 3 months face to face but then changed his mind to a further phone appointment which I have received for April So basically still in Limbo.
I also apologise for only answering to you as I'm not very good at how to work this website & don't know how to pin my posts & replies or how to respond to this post again after so long. So I found the original & as yours was the last comment I have responded to you. Hope this makes sense. I would however like other to see this response for their input on it. I hope you are keeping well. Thanks x
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Consultant appointment after bronchiectasis diagnosis
