Ipf advise please.

[Sooki]

Can anyone use Papworth or Brompton do I need a referral from my doctor.I live in Birmingham.My x ray is showing fibrosis,my mum had IPF. My doctor asked for urgent referral to my local hospital 3 weeks ago,I haven't heard a word.

[Hidden]

Sorry I can't help you personally, but perhaps the BLF helpline would be able to advise you on this. You can call them on;

03000 030 555 (or email at [e-mail])

Ask them exactly what you have posted above, and they will arrange for the person best suited to answering your question to call you back at a mutually convenient time.

There are a few members here with IPF, and they too will be a better able to help you. Hopefully someone will be along soon best wishes, P.

[Jo_BLFHelpline British Lung Foundation]

Hi sooki

You should be referred to a specialist centre when diagnosed with and Interstitial Lung Disease (ILD). I don't think Birmingham has one, probably the nearest would be Sheffield or Manchester. The Royal Bromptom also has an ILD specialist Centre - we are not sure about requesting to be seen in London, just because of the NHS Primary Care changes and GP's now holding the budget.

I would suggest discussing this with your doctor and following up the urgent referral.

As Parvati say's please do call us - 03000 030 555 - Mon - Fri 10am -6pm.

Best Wishes

Jo

[BugsBunny]

Sooki

People from all over the country travel to the Royal Brompton to see specialists. I am under Prof Wells' team for Pulmonary Fibrosis caused by Rheumatoid Arthritis. Prof Wells heads the Interstitial Lung Disease department. Go to your GP and ask to be referred and don't take no for an answer. Good Luck Mandy.

[Hidden]

I am also being seen by Prof Wells' team at Royal Brompton and I live in Lancashire.

My GP uses the "Choose & Book" system or at least did - goodness knows what will happen to that under the new system! I told my surgery that I wanted to have a 2nd opinion from the Royal Brompton and asked them to print out a Choose & Book form that included them as one of the available choices. This they did and I went on-line & booked them, simple as that.

The only trouble is, as I told "Mill" who asked a similar question 5 days ago,(see my recent activity if you want to read), you should be prepared to pay for the travel & possibly accommodation because they will want to carry out several tests which may necessitate several visits.

I can't praise the staff enough though: they are brilliant.

Good Luck - Syl

[edski]

hi sooki, edski here, i have IPF and i live in birmingham, iam at the QUEEN ELIZABETH HOSPITAL in selly oak, perhaps you should get your doctor to refer you there, they have a lung function and sleep dept and specialise in this horrible disease, i hope this of some use to you , good luck