How do i get an appointment with a uk lung specialist?

[Toomuchinfo]

Hi, wondering when can you see a lung specialist for mild copd in the uk? Having seen a few doctors I have been told I have asthma then I dont have asthma then told I have copd then told I probably dont have copd. I really just want some answers and I'm willing to go private if that would help and anyone would reccomend this. Also are there other tests other than spirometry to diagnose mild COPD? Thanks in advance

[corriena]

Copd can only be diagnosed with a ct scan you will have to ask your gp for a refural...... good luck

[Toomuchinfo in reply to corriena]

Thanks for replying if heard it's very hard to get a referral from uk docs! Will ask though!

[skischool in reply to Toomuchinfo]

Spirometry is the gold standard for detecting and managing copd and a ct scan is not required to do so and would probably be an unnecessary expense if you considered seeking a private consultation for anything other than a moderate or severe condition.

[Toomuchinfo in reply to skischool]

Sorry just re read your comment😉

[flicky1 in reply to skischool]

Scans are necessary when diagnosis isn't revealed by Spirometry - I had my emphysema diagnosed by scan. It maybe that early diagnosis is missed if spirometry doesn't find out what's wrong. One nurse at my annual review even tried to undiagnose my condition.

[skischool in reply to flicky1]

Here are the current guidelines for diagnosing copd in the uk under the Nice recommended procedure but i do agree that back up ct scans are useful and are often used by consultants to drill down to specific problems.

nice.org.uk/guidance/ng115/...

[flicky1 in reply to skischool]

I am aware of the current NICE current guidelines but I know other people who have also had to wait years rather months for diagnosis eventually by scan while their lung condition is not properly treated and thus deteriorates

[skischool in reply to flicky1]

Then i am afraid that is down to the incompetence of their respiratory teams,the rest of the world seems to be able to diagnose copd using just spirometry but that spirometry needs to be performed by properly trained people in a proper location and i don't believe most Gp led practice nurses display those skills.

[flicky1 in reply to skischool]

Are you saying the specialist I saw several times at the hospital is incompetent? 😆

[skischool in reply to flicky1]

I am not commenting on your consultant,i am saying that i do not believe that spirometries done by under trained practise nurses in Gp's surgeries are very reliable. as for the standard practice of diagnosing copd in the uk the fact is that ct scans are not deemed to be necessary for the initial diagnosis.

With regard to Redsox's comments what they do or don't do in the USA is not really relative if you are talking about standard UK practice.

[hypercat54]

Hi I doubt you will get a referral if you only mild. I am mild and was told that the surgery only refers if they can no longer cope with your care.

It's very hard to diagnose asthma or copd in the early stages as many of the symptoms are the same. Whichever you are you will still receive the same treatment ie maybe a preventer inhaler and a reliever which is usually ventolin. x

[mike57]

Hello i don't often comment but i read the helpful tips every day. I have taken myself privately to Dr Patel London Bridge Hospital as i have mild emphysema which is getting worse but my last gp referral to chest doctor just said i cannot be too bad if i go to gym 3 times a week. But if you could see me climb the stairs to the gym you would think i run a marathon. I am having a ct scan, a measure to assess gas exchange, and he wants me to do excercise in a mask which will measure lung heart rates. I love nhs and my gp is good but don't seem to have answers

[peege in reply to mike57]

Just want to say that the comment from a medic stating you must be okay if you go to the gym 3 times a week was insensitive and ignorant in the extreme.

Whichever lung disease we have most of us would crawl to a place of exercise to improve ourlot. Grrrrr

Pulmonary Rehabilitation classes are often held in hospital establishments!

I too use stairs upwards but when unusually breathless I don't force it as I don't want to put extra strain on my heart particularly in the winter. Summer is usually fine.

All the best to you.

[Toomuchinfo in reply to mike57]

See that's what I think is missing from normal GP's. If you are mild COPD or asthma they only dish out inhalers until and unless you deteriorate badly. Seems to be very reactive rather than pro active. Also if you get a diagnosis via spirometry you only get an inhaler. There is no further investigation into your condition or what type of COPD you have. 🤷‍♂️

[dogwork123 in reply to Toomuchinfo]

Your right. I was diagnosed copd nearly 15 years ago. Much worse now than then but still same treatment of inhakers, steroids, antibiotics. Never a referral to a specialist. When i asked if i had emphysema or another condition I was told that it doesn't matter as they only treat the symptoms. Can't breathe without inhaler first on waking. Thought of going outdoors is like preparing for a mountain climb. Had costochondritis just after xmas or could have been pleurisy. Two different doc opinions. Still can't breathe although pain now gone. What are we to do?

[peege]

Do you live in the uk? If not then it would have to be a private specialist for a spirometry at the least.

I know that years ago I was quite poorly for several years, if I had my time over I'd go private to get a diagnosis, it would have been much better for my lung health. Good luck

[Toomuchinfo in reply to peege]

Yes in uk and yes already had spirometry but it is borderline. Thanks for responding

[gingermusic]

Yes a serious talk with your GP is a good place to start, ask for a either a CT scan or an appointment with a consultant

[Toomuchinfo in reply to gingermusic]

Yes think I might ....just to see what they say!!

[Bham-Mo]

Ask your GP for a private referral. I am sure most of the hospitals do it but I went to the Royal Brompton. They have private and NHS wing. If you go on their website (Royal Brompton) you will find the link. Either phone or email them. They are very fast to respond. They will guide you from there as to getting the medical information and past results from your GP and then make the appointment with the appropriate specialist. I dithered and delay for over year and regretted it so much after experiencing their service and wishes I had done it sooner!

[Toomuchinfo in reply to Bham-Mo]

Yes it's a shame but I feel I might get much better service from private consultant.

[Bham-Mo in reply to Toomuchinfo]

Doctors and nurses a

[Bham-Mo in reply to Bham-Mo]

Doctors and nurses are the same as in the NHS, however it’s the red tape and NHS management, NICE etc that prevent the treatment and access (in my opinion anway)

[santisuk]

If you are resident in the UK and don't know who you want to see privately in the UK then you will have to get a referral from a GP. Make sure you emphasis that you are willing to pay yourself (or have private insurance) and your GP will have no NHS budgetary concerns that might otherwise prevent him from writing a referral letter (if a GP has been treating you and does not agree that a specialist consultation is necessary the fact that there is no hit to the NHS will probably unlock any concern, but obviously some open discussion is needed anyway).

If you are resident in the UK and know a particular hospital that has lung consultants and can select one by internet research then phone up the consultant's secretary and ask whether that consultant is accepting private patients (might be stated on the hospital's webiste). The secretary will likely ask about the background to your request and whether you have a GP; in normal circumstances they will ask that you get a referral letter but if there are some special circumstances why you do not want to do that or your GP is reluctant then discuss it with the consultant's secretary.

Those not resident in the UK who want to access UK consultants privately could get a recommendation by paying a GP privately to do so (private GP services can be accessed on the internet). Once a consultant has been identified either by that process or by internet research of relevant clinics/hospitals the patient would contact the consultant's secretary or the clininc/hospital switchboard to get an appointment with an appropriate consultant. Normally you would be asked to provide any relevant documentation of treatment/test results/scans etc to date, but it's unlikely you would be asked for a formal referral letter from prior medics.

[I'm a former UK resident, now residing in Thailand with regular experience of hiring UK specialists under private insurance and more recently under 'self-pay' terms, both when I was a resident (with a UK GP*) and now as an expat when seeking second opinions or UK treatments from my Thai base. Have done so re lung, spinal damage (disc prolapse), heart bypass and orthopaedic hip joint damage over the last 7 years!]

*I'm still in fact entitled to consult a UK GP under NHS terms for the 1st 15 years of my non-residence in the UK under NHS rules, but I find no need to do so for this purpose under discussion when UK consultants can be researched over the internet and contacted directly through their secretaries/hospitals

[Toomuchinfo in reply to santisuk]

Thanks for detailed response very helpful!

[Toomuchinfo in reply to santisuk]

Thanks for detailed response very helpful!

[MoyB]

I was diagnosed with COPD and left to get on with it. I was having chest infections every four weeks for months on end. I saw my GP who just kept prescribing antibiotics. I said I wanted a referral to a resp. consultant and would pay privately. My GP said, 'Yes, that's what I would do.' I saw the consultant within two weeks. I explained everything to him. He thought I had Bronchiectasis as well so said I needed a CT scan. I asked how much this would cost and explained that my health insurance plan only covers the initial consultation so he immediately transferred me to his NHS list and I've been seeing him annually ever since. The cost of the CT scan was covered by NHS. It seems I have mild COPD/asthma overlap and Bronchiectasis. The consultant changed my inhalers and medication and I have been much better since with only two exaccerbations a year on average. I also found a local Breatheasy group to be of great help. For example, when I first went there (before seeing the consultant) I heard about 'rescue packs' ie keeping antibiotics and prednisolone at home so you can self-medicate if necessary and nip the infection in the bud. I also found out from them about Pulmonary Rehab classes that were running in the area. (My GP had said there were none available and the nurse said they wouldn't accept me anyway as I wasn't ill enough!). I got referred to the PR group after giving all the details to the nurse and it was a life changer for me. Lots of information and encouragement to exercise. Great support.

I can't guarantee that all private consultants would transfer you to NHS like mine did, but it may be worth the cost of the initial consultation to get some answers. Good luck! xx Moy

[flicky1 in reply to MoyB]

MoyB are you by any chance in the same Breatheasy group as me in East Sussex?

[MoyB in reply to flicky1]

Eastbourne?

[flicky1 in reply to MoyB]

Yep

[MoyB in reply to flicky1]

See you soon then!

[AutumnHedgerow]

I concur with everything said about self-referral privately if you can't get GP referral to a private clinic, it is possible: I did eventually because the NHS referral to an asthma consultant meant I had a 6 month wait (but the NHS appointment came through eventually, the same week as I had gone private, and like MoyB was fortunately referred back to the NHS by the private consultant). In terms of what you are trying to find out, a full lung function test is necessary because it is the level of reversibility (after ventolin) that distinguishes asthma from COPD as they both behave much the same otherwise, and as someone else says, decreased gas exchange (and small airway damage) is more likely in a COPD diagnosis (although I only have an asthma diagnosis but also have a slightly below normal gas exchange due to an alectalosis (spelling?) but otherwise good spirometry and reversibility so is asthma) . You can also get IGE testing to see if you have any allergic reactivity (Pollens, animal dander, mites etc) as that also points more to an underlying asthma ( that might coexist with COPD all the same). A CT scan will determine if there is any emphysema but won't show up the bronchitis side of COPD (as far as I know)

[Toomuchinfo in reply to AutumnHedgerow]

Thanks good advice!

[lKeith]

Toomuchinfo

Hi, Had the same problem so went privately for another opinion.Cost a bit. I'm lucky as I have a second opinion booked for Cambridge that may settle the issue. I already know that my lungs are shot so what they can do for me I don't know.

IKeith

[Toomuchinfo in reply to lKeith]

Thanks....In terms of cost are we talking hundreds or thousands here . If you dont mind me asking😉

[lKeith]

Toomuchinfo

Hello again you can ring around the private sector for treatments, however many of the physicians work with or know the original person who diagnosed. Your own GP can do a refferal but that is likely to be someone in the NHS.

IKeith

[lKeith]

Toomuchinfo.

Hi it cost me about £250/300 and was carried out locally

IKeith