How do I ensure referral to speciaist unit as recommended by NICE

[Trow]

Diagnosed IPF and PH but no referral to spealist unit because covid have normal spirometry DLCO 20% KCO 31% predicted should I be more pro active in seeking referral

[Katinka46]

Welcome to this forum. It is very friendly supportive and knowledgeable. You certainly should have a referral to the specialist units for Pulmonary Vascular Disease. There are six in the country. Even with the Covid problems I would have thought that a phone consultation would have been possible. Who has made these diagnoses? They must have been made by a consultant? It is too specialised for a GP? What tests have been run to diagnose the PH? It is usually confirmed by right heart catheterisation after an echo has shown a problem. If you felt comfortable telling it I should like to know a bit more of your history.All the best

K

[Trow in reply to Katinka46]

Diagnosed 12 months ago asymptomatic no follow up due to covid .letter stating c.t. revuiwed showing enlarged blood vessels in June had to write to get cardiac ultra sound result PAP. estimated 51 mms plus right atrial pressure

[Katinka46 in reply to Trow]

It does sound as if you need to be referred to your local PVDU. I assume the PH is because of the lung disease? Or is there another cause? What a difficult state of limbo you are in. Do you have confidence in your GP? I think you have fallen behind a radiator in some hospital somewhere. I can see no reason for you not to be referred with those significant test results. Even if it might mean a delay at least you need to be on the books, as it were.K

[Hidden]

Your GP can refer you, its mainly when the condition is unstable that referrals happen. The DLCO and KCO is only obtainable by having a full lung function test so I guess you have been referred for that at some point results reviewed by a specialising respiratory consultant. Spirometry doesn't measure the DLCO and is usually carried out in GP surgery.

No routine spirometry even for me this year due to covid.

[Katinka46 in reply to Hidden]

A referral to the PVDU has to come from a consultant. As they are tertiary centres.

[Trow in reply to Hidden]

Have had full pulmonary function tests at hospital but no c.t scan because only doing cancer patients! So respiratory consultant cannot refer to specialist unit

[Hidden in reply to Trow]

I am sure if the need was urgent your specialist consultant would request a CT scan.

Best wishes

[Trow in reply to Trow]

I still waiting for CT scan so no referral now only asymptomatic at rest need 2 litres of O2 forany activity or have chest pain no idea whether in parameters for pirfenidone or nintedanib not happy to go to A&E in present high positive corona numbers any advice would be helpful

[Katinka46]

Hmm... Tricky one. My husband has had CT scan for kidney growth during lockdown. And I had MRI scans for a research project. 🤔 So I suppose it is a postcode lottery. Keep politely pushing your GP.

K

[hypercat54]

I have copd (not severe or anything) and my doctors told me they only refer if there are symptoms which don't fit with this. There aren't so no referrals. The criteria they use is if they can handle your care without a consultants help.