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[TullyBev]

I am new here and have recently been diagnosed with a 'moderate restrictive ventilatory defect' after having lung function tests. My GP referred me to an outpatient lung clinic and I just got a letter saying the wait time is up to 12 months. I am due to see my GP in the next week, but my question is can I wait that long? In the last couple of years I have had quite a few nasty respiratory illnesses that have left me struggling to breathe. As I had had a past history of asthma, I was given preventer puffers and ventolin, antibiotics and prednisolone for up to 10 days at a time. I was audibly wheezing both on inspiration and expiration. Ventolin seemed to make no difference, even with 12 puffs at a time...hence the lung function test and result. Maybe I don't have asthma at all.

I have always felt that I don't have the lung capacity of others and when I get sick I can't even blow out a candle. I can walk my dogs quite fast on the flat for kms, but find going up hills for too long very difficult. How concerned should I be re the lung defect? Should I see a specialist soon? Any advice/comments welcome.

[3girlsmama]

Welcome to the site 0125. So sorry about your diagnosis and your daily breathing problems. I don’t really have any answers to your questions, except to say that if you feel unwell do get an emergency appt with the GP. Also your GP should be able to expedite you so you can a specialist much quicker if you tell them the wait is 12months. I’ve had to do this a few times. Wishing you all the best. This is a lovely forum to be part of x

[TullyBev in reply to 3girlsmama]

Thanks for your reply!

[Hidden]

Go on the internet and find a good respiratory consultant at another hospital. Take the name to your GP and insist on a referral. It is your right. A year iis ridiculous and is against the guidelines.

[TullyBev in reply to Hidden]

What are the guidelines? My GP thought I would only have to wait a couple of months. I think a private specialist is the go.

[Hidden in reply to TullyBev]

Several members have agreed with me that your best course of action is to go back to your GP and insist on a referral to a clinic which can see you sooner. When I was having trouble getting care for my bronch after returning from living abroad in 1982 I went to see 2 private consultants. I walked out of the office of the first one and transferred to the NHS practice of the second one and have been with his clinic in Birmingham ever since. I could distinguish between the two and do this because I knew my condition very well. Shamefully the first consultant is still practising in the private sector and doing his patients harm with treatments which are bordering on the unethical. Would you know the difference?

[TullyBev in reply to Hidden]

The system is a bit different in Australia where I live. Ideally I would go to an outpatient clinic of a major public hospital and see quality specialists, but this will take up to 12 months apparently. If I go private I presume I will see someone much sooner and I do need to see someone soonish. If I have a progressive lung defect I can't wait.

[Hidden in reply to TullyBev]

You didn’t say that you are in Australia. I don’t know how to operate within their system. You need to see someone. I still think that you should nag nag nag to get an earlier appointment. Ring the department itself and ask for a cancellation, get your GP to experdite it as an emergency.

[Superzob]

Agree with the others: you are entitled see any consultant in any hospital, and the waiting lists in others may be shorter. In the meantime, you might ask your GP to prescribe a long-acting bronchodilator; these are suitable for both asthma and fixed lung obstruction, so you don't have to worry about which it is (unless it isn't either, of course), so you might get some relief whilst you wait for the tests.

[TullyBev in reply to Superzob]

I am on breo currently and take atrovent and ventolin as needed, although the tests showed that ventolin does not change my results. I will ask if there is something else I need. I have prednisolone at home.

[Whitechinchilla]

Welcome. My that is a crazy length of time to wait for an appointment.

You have had some good advice here already and I would echo that you need to go back to your gp and tell him you find that waiting time to be unacceptable. We sometimes have to be assertive, after all it is your health at stake here. Good wishes.

[TullyBev in reply to Whitechinchilla]

I am seeing my GP next week. Wait time is insane. Thanks for your response.

[Whitechinchilla in reply to TullyBev]

Good wishes for a good outcome.

[Hidden]

Welcome to the forum!

Wow that’s a very lung wait! Means GP didn’t specify it as urgent. Go back and insist for an earlier one. You sound like you have had your fair share of troubles.

Take care xx

[TullyBev in reply to Hidden]

You're punny! I am seeing the GP tomorrow.

[wheezybronch]

You should have been referred to a specialist consultant already. I would write a letter of complaint to the people who have said that you have to wait a year. In the meanwhile, if you are able to, I would pay for a private consultation to attempt a definitive diagnosis and a treatment plan. You can be treated within the NHS, good luck. You sound as though you may have COPD or bronchiectasis. Another diagnosis, in view of you having a wheeze on breathing in and out is that you may have Bronchomalacia, this may also have the trachea involved, Tracheobronchomalacia. If you are using the ventolin inhaler 12 times at a time with no affect you should probably be using a nebuliser, it is a much bigger dose and you get more of it inside you. An inhaler only delivers a small percentage of the medication to where it does you good ( deep in the lungs ) depending on how good your technique is. Even a good technique will deliver about 20%. Have you been shown how to use the inhaler ? You can use a spacer or a spacer with a mask, this is a bit cumbersome but will deliver a much bigger percentage of the medication. Prednisolone ( is it a 30mg dose ?) should relieve the wheeze, if it does not, you need to be seen immediately. I would seriously consider changing your doctor or at least asking for a second opinion, yor treatment sounds deplorable. I wish you all the best.

[wheezybronch]

PS, Sorry, did not know that you were in Australia so obviously you cannot be treated on the NHS, I am unaware of your systems over there but everything else I have said seems appropriate, good luck.