Disappointed update

[Billythecat]

A sincere thank you for all your thoughtful and supportive replies. I requested a ct scan and the locum gp said it had to be accessed by a consultant referral, which he did for me. Hence year wait for first appointment. Have bitten the bullet and booked a private appointment for the end of September (this year)! I will probably have to pay for ct scan as well but at least I will have a proper diagnosis. However, I think I will write to my gp practice and let them know, although when I requested a copy of the referral (required by the private consultant) and told them why, they didn't seem surprised. Onwards and upwards......xx

[sassy59]

Good for you and hope all goes well xxx

[Caspiana]

Good to hear Billy. I did read your other post about the appointment in September 2025 and was shocked. I don't understand how it can be so. Today I went to see a neurologist and he booked me an MRI for tomorrow morning. Maybe we have more hospitals in Japan? I don't know. I truly hope you get the answers you need soon.

Best wishes,

Cas 🌼

[peege]

Good for you, it will certainly beat waiting for 13 months with ill health. Hopefully the consultant can then put you on his/ her NHS list. It took 3 years of constant infections, antibiotics and pneumonia 5 times (in less than 2 years) and deteriorating asthma before I got a referral. The referral was a turning point, I had allergy tests (because aspergillosis was suspected), full lung function tests and a CT scan for diagnosis. Because of the infections and pneumonia I ended up with the addition of Small Airways Disease and CFS (chronic fatigue syndrome).

I was very naive believing that GPs would look after me, if only I knew then what I know now I woukd definitely have gone private paying on a credit card. Bravo you I say and good luck.

[Annscottie]

Glad you've made the decision and hope you get some answers. There's some very knowledgeable replies on your previous post which might help with questions you could ask.

I hope the consultant you see also has an NHS list for you to be put on.

All the best.

[PaulineHM]

Let us know how you get on…

Go well,

Pauline

[Billythecat in reply to PaulineHM]

Thanks Pauline im reading the arti le with interest and depression. I do blame myself as I smoked when younger as many nurses did, as you will know. (interesting too with the outcry against outdoor smoking in the current news) However the article identifies some important issues and I need to process it properly. You are obviously very knowledgeable and a true advocate for those with lung conditions, despite your own considerable health challenges - thank you.

[PaulineHM in reply to Billythecat]

Awwwww please don't blame yourself for smoking. Resp Services don't blame or shame us these days because they recognise how things were for us and that it is an addiction. My understanding is that nicotine is second only in addiction strength to crack cocaine- not that I have tried the latter! hahahhaaaaaa.

I marvel at my capacity for denial back in the days when I surrounded myself in cigarette smoke!! And in any case COPD is a very undifferentiated disease/condition. We have to be unlucky to fall into the physiological category where it gets us!!I havent smoked for 21 years (since diagnosis ) and one of the best things about that is that I don't have to feel ashamed anymore. of having a poor help behaviour which didn't serve me well. When I did stop my lung function improved slightly- yay!

Mostly life is good, although sometimes I feel like I am held together with bits of string!!

By the way I have found the Asthma Lung UK online support groups really helpful. Find them on their website.

Wishing you well.

Pauline

[PaulineHM in reply to Billythecat]

P S Pleased that you found the article helpful.

[Coughingalltheway]

As far as I'm aware, GPs can only refer for x-rays or ultrasounds, CT and MRI scans are only ordered by the specialist consultant unfortunately.

I think that you are wise to go private if you can afford it. You will probably find that the person who you see privately, also works for the NHS so it might be worth Googling their name beforehand as you've still got to get the NHS to acknowledge your results when you get them.

I can feel a rant coming on about the unfairness of the situation that you've been put in so I'd best shut up and I'll just wish you the best of luck.

Jan xx

[Hodgey58 in reply to Coughingalltheway]

I agree .Three years at my local doctors telling me I had Asthma.At one point begging for a spirometer test as I struggled to breathe.One nurse took pity on me and requested I see a specialist.I got an appointment through for the following year ,I thought they had made a mistake.At the point that I couldn’t walk to the bathroom I begged my husband to take me to a & e.17 days in hospital on oxygen and told I had a ILD.All the tests in a week.I wouldn’t be here now if I waited for the referral.1year on and many tablets but so thankful to be still here .The thing is use your gut instinct if you can’t get answers through your gp Go straight to hospital and don’t leave till you get answers.

[Coughingalltheway in reply to Hodgey58]

Similar to me. I got taken to hospital because I couldn't breathe and once there, they kept telling me to calm down as they thought that I was having a panic attack even though I've never had one before in my life. After I collapsed with respiratory failure in front of them, they took my more symptoms seriously. My eosinophils counts are still really high so I'm hoping that I will eventually get some feedback as to what happened and why. I'm still currently going under tests even though that was 6 months ago. The NHS are still great for emergencies but they can no longer cope with chronic conditions in my opinion.

Let us know how you get on?

[Xlizixx in reply to Coughingalltheway]

Exactly what happened to me. The only way I was going to find out what was wrong with me was to go private which I did, then referred back to nhs for treatment. I know people with similar lung problems who can’t afford to go private. It’s not right.

[Coughingalltheway in reply to Xlizixx]

I'm glad that the NHS took you back for treatment. Sometimes they want to run their own tests first which normally means a long wait. I've had my appointment with a NHS respiratory consultant cancelled a couple of times but I've just been given another one for mid October so I'm keeping my fingers crossed that she's got all the information that she needs now and she'll be able to give me definitive answers.

[xcindyx in reply to Coughingalltheway]

Thank you. No you are right they aren't very good with chronic conditions. Tbh I have had to work out a lot for myself, which the consultant admitted I had done. Trial and error. For instance, I needed antibiotics for my circumference and my go refused them until I have them a sputum sample which I could not do. I managed to get hold of some which helped. I am seeing DAIRS nurses next month. If I had remained on the nhs waiting list I would still not seen a consultant. I hope you get sorted soon. You should not have to suffer like this and hope your appointment doesn't get cancelled again.

[Coughingalltheway in reply to xcindyx]

Thanks Cindy xx

[Alberta56]

Grr to having to pay for what should be yours by right. I hope it gives you the results you need to start on a proper regime. My doctor sent me for a CT scan without any consultant being involved. And come to that, an electrocardiogram and other tests on various bits of me. Perhaps it depends which authority you are with. Best wishes.

[Billythecat in reply to Alberta56]

That was fortunate! Seems here (Surrey)only consultants can authorise. However the one I've booked with is an expert in his field in NHS and Sub Dean of undergraduate programme so I'm hopeful it's money we'll spent!

[Alberta56 in reply to Billythecat]

It sounds good. Hope all goes smoothly

[watergazer]

Hope all goes well. I’m still waiting to see the ENT consultant and when I check the waiting time it keeps moving further back. X

[Loopylorre]

Hope all goes well for you, good luck & keep us updated please xx 🌷💐🌺😊