Disappointed

[Billythecat]

I have been diagnosed with Stage II COPD by a nurse practitioner following a spirometry test. After trying various inhalers and 3 lots of antibiotics, I still have green phelm. Tried carbocisteine which didn't work. I asked to be referred to a respiratory specialist after speaking with a helpline - Asthma and Lung UK. Got the appointment yesterday for September 2025! Not a mistake - I checked. Not sure what state my lungs will be in by then! As a retired NHS nurse I'm at a loss. Sorry to moan and many on here are so much worse than me, but I want to prevent further damage. I gave up smoking 21 years ago. I have found this site really helpful and supportive, so thought I'd tell my story. Best wishes to everyone on here. X

[sassy59]

Welcome to the forum and pleased you’re finding it all helpful. Shame about your referral being over a year away. That seems incredible. Hoping you can be seen sooner. Xx

[helenlw7]

Welcome. Having to wait 12 months to see a consultant is a long time, especially seeing as you already have Stage 2 COPD.

[Annscottie]

Hi. Just wondered if a sputum test might help in identifying what drugs you need?

[Billythecat in reply to Annscottie]

Thanks. I too queried this and was told they don't do them any more!!! Things have changed since I was nursing, it seems. X

[Annscottie in reply to Billythecat]

Is that postcode related? I'm sure people on here have had recent sputum tests.

Let's hope you can follow Swizzy's advice after your private consultation.

Best wishes.

[Troilus in reply to Billythecat]

Can’t be right Billy. I had a sputum test in May - end of May. (This year)

[Billythecat in reply to Troilus]

I know - I think they prefer to exhaust various antibiotics before resorting to a sputum specimen!

[Troilus in reply to Billythecat]

Could well be true Billy. I had had two courses before they asked for a sample.

[Dixy in reply to Billythecat]

I was given a sputum container to use if necessary, at my first annual review yesterday by our Practice nurse.

[Superfly1975 in reply to Billythecat]

Oh yes they do, I asked my respiratory nurse for a sputum test a couple of weeks ago and had one without any problems so not sure why you are being denied.

[sunshineday in reply to Billythecat]

That's crazy. We have a supply of sputum pots at home and hubby advised to do a sputum test as soon as possibility of infection and drop into surgery or take to path lab. As hubby has Bronchiectasis and has a rescue pack of Doxycycline at home (lungs colonized with Haemophilus Influenzae) he starts those after doing sputum test. It might be worthwhile checking with hospital path lab if they do accept sputum samples from patients of local GPs. Perhaps different health areas have different protocols. Hope you can get an earlier appointment, can't your GP ask for an urgent referral. ?

[Coughingalltheway in reply to Billythecat]

Could you request to see your respiratory communtity team? Mine do sputem tests as they say it's important to know which antibiotic to give you. Might be worth a try?

[Izb1 in reply to Billythecat]

I had a sputum test last month so they are still doing them x

[Swizzy]

How does she know that it is copd? With those symptoms it can just as easily be bronchiectasis which has to be diagnosed by ct scan. You need a proper diagnosis and treatment before further infections cause more damage and if you do have copd you cannot wait for proper treatment. We do have to be very proactive in our own interests. Either call the department and push to get a much earlier appointment or if it was me to be sure that I saw somebody trained an experienced in all conditions ( most general resp consultants do not know much about bronch) I wd look for a bronch specislist at a large teaching hospital. Take the name to the GP and INSIST on a referral. There is far too much compaicancy about lung problems.

[Billythecat in reply to Swizzy]

Thanks for your reply. I have tried to bring the appointment forward but as it was designated 'routine' they can't bring it forward. They said phone in a couple of months as there may be a cancellation. I requested a ct scan but that necessitats a consultant referral. I have just booked a private c onsultation at a cost of £240 and ct scan start at £488! No holiday for me then, but health more important!😒

[Swizzy in reply to Billythecat]

Yes consultants need to order ct scans - or as you are doing, go private and pay for one. When you know what you have you can start looking for the right NHS specialist. If you have bronchiectasis the only real specialists work in large teaching hospitals.I pay for my cardiologist and after years of neglect finally paid for a dexa scan to find that I have significant osteoporosis and 4 fractured vertebrae. Holidays? What are those?

[Billythecat in reply to Swizzy]

Gosh, how dreadful. I'm blessed with a great cardiology team having had an out of hospital cardiac arrest - was luckily resuscitated by the ambulance crew in time. Seems you have to have a crisis to access the specialist team promptly. I'm trying to avoid a crisis or any further damage. I hope you are now getting the relevant treatment x

[PaulineHM in reply to Billythecat]

Hi, have replied in more detail. Don’t waste your money on a private CT at the moment.

As others have said I would push for a C and S via a sputum sample.

Pauline

[welshie1234 in reply to Billythecat]

I started my journey exactly the same as yours ( I have ILD) and my first lung appointment at the hospital was scheduled almost 8 months later so I decided to go private initially. I deliberately opted for a consultant who also practised within NHS. It turned out to be a very good move. He was amazing and I had a continuation of care when I transferred to NHS. He was very helpful. I live in Wales.

[sunshineday in reply to Swizzy]

Spot on Swizzy xx Joy

[Truckerclark]

my thoughts are firstly a nurse should not be the person to diagnose COPD that should be done after 4 or 5 different tests at the respiratory clinic under a consultant ,, unless you’ve had that already , and if 3 rounds of antibiotics were tried were they all the same ones ,,, that would not help ,,,steroids used .? During that too ,,, if I were you I’d demand to see doctor get referral for specialist now or go see your mp and complain ,,,,

[PaulineHM in reply to Truckerclark]

Standard diagnosis is vi Spirometry only at the moment. ( England ) If full Lung Function tests are needed then Consultant will arrange.

[BronchyBronwen]

Brilliant advice from Truckerclark. COPD is umbrella term. You must have a CT scan. I would sit there (with GP if you get a face-to-face) until I got a CT scan and/or referral to specialist.

Yes, more likely to get support from MP now I think (if I dare say so!).

[BronchyBronwen]

Shd have said also brilliant advice from Swizzy too.

[Keem59]

Omg that's shocking to hear. I know you'll not probably want to do this but have you got a private hospital that you could see a respiratory specialist for a consultation only? it might just bump you up the queue...or what about badgering the appointments line for a cancellation ...I'd be ringing daily, it might be worth it. I'd not take that on a nurses say so either.

[Shirazmataz]

hi Im just wondering if there are other possibilities with shorter waiting times at different hospitals/clinics near to you? Did the surgery look at waiting times when they initiated your appointment? One year wait is crazy. It just shows what a dire situation the NHS is in. One thing might be to ring the consultants secretary and suggest that if there are any cancelations at short notice that they want to fill you would be interested to be contacted. Might help you never know. Good luck, Sally.

[PaulineHM]

Hello, feel free to moan! As a retired nurse diagnosed 21 years ago I empathise with your situation.

Stages: I try not to worry about the stages, what matter to me more is the level of function that I have.

There are folk who are stage 1 who are only able to function badly and there are folk further along the line who have a better level of function. I concentrate on function and find that more useful. We don't all fit into the stages 1-4 boxes.

Do you have a copy of the referral information from your GP ? It is super important to get on top of those exacerbations before the winter comes. Recreated exacerbations/infection rare not only unwelcome they can be especially damaging.

Can I ask…..Are you on a prophylactic antibiotic ? What is your current MRC Dyspnoea score ?Have you been referred to PR ? Do you take Vit D in the wintertime ? Up to date vaccinations ?

Feel free to DM me to discuss more- happy to chat this through with you further.

Go well.

Pauline

[Billythecat in reply to PaulineHM]

Thanks Pauline, I've manage to get a copy of the referral and now am paying for a private consultation. No prophylactic antibiotics- still trying to resolve original chest infection that doesn't seem to clear up. Feel a bit stupid as I should have insisted straight away for a consultant referral but I didn't know what powers these new nurse practitioners have - limited ones it seems! I am grateful to nhs for a lot - I have excellent treatment for my other issues - but realise the pressure on the NHS has led to this scenario. Hope you are well and free from infections x

[PaulineHM in reply to Billythecat]

Ok, yes I hope you manage to resolve things for yourself. I have been a patient rep for local health services for sometime so have an idea of how things can pan out. I am also a patient advocate with one of the big pharma and have learnt a lot.

90% of COPD is managed in Primary Care. these days. I found that trying to identify my COPD phenotype has been helpful. COPD is such an umbrella syndrome.

Have you worked through the COPD passport on the Asthma Lung UK website ? That can be a very helpful check list.

Once we know there are very simple steps we can take, to work a self management programme to try and keep ourselves well. that is a full time job for me now.

Two and half years ago I was deteriorating -I requested waited 9 months for an OPD appt. Attended and was offered Roflumilast ( for severe COPD only) -a shared care drug only prescribed by the Consultant. which has worked out well for me. No bacterial infections over that time until this month which has been bliss in contrast to earlier years. and even this time then not too bad. Saw an ANP who was very helpful. I almost always have to be very proactive re my health care from HCP's.

Here is a link which you may or may not be interested in from a societal value point of view. It talks about the structural Violence model of COPD care. ( its a global thing ) You can always save it for later.

atsjournals.org/doi/full/10...

Keep in touch with us here. DM if you need to.

Go well and hope you feel better very soon.

Pauline

[armstrong2]

hi to you l am on carbocisteine ...it was 2 x3 times a day unfortunately l had side affects so reduced to 1x 3 times a day....l have moderate copd the tablets have reduced my mucus to virtual zero ...l have been on them only 3 months due to having been hospitalized with pnuemonia ....just a bit of advice to over ride the appointment for consultant keep ringing to see the triage nurse ..you may get a cancellation and your appointment my or could move nearer than 2025 !! wishing you good luck

[Snowdrops_17]

I must admit if I could go private I would but my state pension and my little German pension doesn't allow this! If I had a very persistent problem like yours I wouldn't lie and take it!

I would be a complete pest to my GP, to ask for a referral and CT Scan...

Call every day and demand a call back from the doctor 👌

If my illness would affect the quality of my life, yes, I would be very persistent altogether! Doctors have taken an oath to preserve Life!

So that is their responsibility 👍

If I would go downhill health-wise because of their negligence, then that to me is breaking their oath!👌

Stay persistent please 👍

Good luck with your private appointments Billy 🙏🥰

[Mooka]

Have you tried going back to your GP to change the urgency for this appointment from ‘routine’? GPs do have the ability to ask for more urgent appointments. Good luck whatever you chose to do.

[Numptybrain]

I don’t think this is right, I slipped through the net and then Covid hit so I waited 18months before I seen a consultant after getting pneumonia and sepsis, then came the diagnosis of bronchiastasis. I’m now seeing a consultant regularly but for fluid on the lungs and have a load of sputum pots at home ready to take in incase I have an infection. I would make an appointment with a GP and speak to them about referral waiting times.

Take care

Wendy xx

[Izb1]

I think you are doing the right thing going private to see a consultant a 12 months wait is ridiculous . After going through the respiratory department at my local hospital for treatment who proved to be useless I went back to my gp with a name at a different hospital and asked for a referral and am now under a great consultant. In the meantime I would put in a sputum sample so you can get on the right antibiotics, speak with your gp re this. Let us know how you get on, good luck x

[Ern007]

Things have changed Billythecat - Since I turned 70 I have not seen a cardiologist although I have IHD, AF, ex VT and 2 leaky valves.

Everythings seems to be done via my GP, they keep in contact - My GP though will order a CT when necessery, and Echo or 24 hour ECG - The system is so slow.

Appointment times are getting longer - My COPD I have my rescue pack . I get CT scans but only because I may possible have lung canv#cer, otherwise I doubt I would get one at all.

I hope you get seen sooner - 12 months is a long while and we all should be seen within a reasonable time.