Pulmonary Fibrosis

[Lunus]

I would appreciate any advice on whether you think it’s better going private rather than using the NHS.

My experience of the NHS has not been good. I was initially told two years ago I had scaring on my lungs, further X-rays were done three months on and I was told it was not progressive. Since then I have been feeling increasingly breathless which led to me visiting my doctor in September last year. I was told my lungs were fine and I was suffering from an upper tract respiratory infection. I have deteriorated since then and saw another doctor early last week. He informed me i wasn’t getting enough oxygen and it was a problem with my lungs. Said I’d be contacted by our local hospital to arrange an X-ray and I also needed to see a lung specialist. I’ve heard nothing to date and I feel time is against me.

I’ve just contacted the Bupa Cromwell hospital in London to try to book an X-ray there but they inform me I’ve got to go down and see a consultant first and he would refer me for an X-ray. So which option do people think would be quicker to get properly diagnosed and a treatment plan organized, Bupa or the NHS? Any advice appreciated.

[CDPO16]

Firstly I would contact the xray department at your local hospital. Where I live if a GP refers a patient for an xray it is done electronically. All the patient then has to do is go to the department where the reception will have the details on computer and the xray will be done. The radiographer will normally tell you how long the report will take to be sent to your GP.

As for seeing a specialist privately please consider that any tests he/she decides to do will also be on a private basis and will incur additional costs.

[Lunus in reply to CDPO16]

You my friend are an absolute star. I called them and my X-RAY is booked in for tomorrow afternoon. Thanks so much.

[CDPO16 in reply to Lunus]

👍. Good to know and glad to have been of help.

[Hidden]

Your xray and referral to a lung specialist only from your appointment with the doctor last week. I would think not even going privately you can get to see someone immediately.

If you decide to stay with NHS referral what you could do is chase up your doctor in about 3 weeks who in turn can chase up with the hospital. Of course if you find things are getting worse over next few days speak with your GP again.

I've never gone privately in UK so can't advise. Not sure of the precise turn around time going privately even, it would depend on the practice I guess. The other down side is its costly, wouldn't be a good thing to switch specialists part way through if you decided it was too costly.

[Lunus in reply to Hidden]

Thx. Got booked in with the NHS for X-ray tomorrow so I’ll progress with that, as you say, far cheaper as well.

[CDPO16]

Just thought to say that whenever I have gone for a chest xray I just wear a cotton t shirt under a cardigan and/or a coat. It means all you have to do is take outer clothing off to have the xray and eliminates having to get changed into a gown which is a real faff when breathless.

[peege]

Firstly if it was me (having had many x-rays which were pronounced clear during the,ong NHS path to diagnosis) I'd be requesting a CT scan. I think somehow you need to find a consultant who's an expert in PF and get a referral either on NHS or privately. Many work in both.

I'm wondering if a call to the BLF helpline would be useful for you. They are qualified to offer you advice and some guidance on how to get properly treated.

All the best. P

[Lunus in reply to peege]

Thanks. I have my X-ray tomorrow then the results with my doctor two weeks later. If I don’t get a referral I’ll give them a call. Thanks again.

[peege in reply to Lunus]

You can look up hospital lung consultants in your area to see if they're good on PF then when you finally get to see the gp you can ask to be referred to that particular specialist. By the way, the blf helpline number is 03000 030555 and uk office hours. I'd still give them a call even though you have the x-ray tomorrow. P

[Lunus in reply to peege]

Thanks so much, really appreciate your help. 😊

[AngieB72]

You will need a High resolution CT scan to diagnose PF as an X-ray isn’t enough - you need to get to see a consultant as most GPs do not have a very good knowledge of PF. I went 3 years before mine was properly diagnosed and then only because my rheumatologist referred me to a lung specialist.

[Lunus in reply to AngieB72]

Thx Angie. x

[rodders1941]

hi l also have IPF l was shunted from piller to post for 2 years hence now l have lost half of my lung volume. so my opinion of nhs specialists is nearly zero. but having reached the grand old age of 8o years and had a very full life so l say bring it on !!!!!! take care rodders

[Lunus in reply to rodders1941]

Good for you mate!

[Karenanne61]

I will just add that many consultants work privately and for the nhs so you could end up seeing the same person! Sometimes private is quicker, and private hospitals are nicer with better food. However, many small private hospitals do not have the appropriate critical care facilities for patients with serious lung diseases so will not accept them.