Just chased up my local surgery as I have Interstitial Lung Disease but have not received a 'vulnerable person' letter from the NHS yet.
Apparantly, Interstitial Lung Disease is not on the list! She was really surpised herself.
Anyone else been told this?
That’s not right surely? Pete hasn’t had his letter either so I’ll phone the surgery on Monday. Pete has COPD, sarcoidosis and heart disease. We’ll see what happens. Xxxx
It’s on the website, connected to pulmonary fibrosis
Yes it is specifically listed as "interstitial lung disease, including pulmonary fibrosis and sarcoidosis" blf.org.uk/support-for-you/...
Honestly, some of the staff at these surgeries are pretty clueless!
Interesting response. I note that this link is to the Lung Foundation website. Is this the same list the GP's/Surgery will be using?
I believe the BLF said they've had guidance direct from NHS England. As has Asthma UK. I've come across a letter from NHS to GPs from which you can see there are various sources being used to identify who should be on the "shielding" list. I'll post this separately too in case anyone else is interested england.nhs.uk/coronavirus/...
Hi Casagofrey
Not sure why your GP says its not. I have ILD/Pulmonary Fibrosis. I have had a text from the NHS on Monday to say I am one of the shielded and also received a letter from my GP stating the same.
Mollie
I think the problem is that it doesn’t fit the box and the system can’t deal with non standard diagnoses. I’m very worried because my problem COP (cryptogenic organising pneumonia ) obviously isn’t recognised but I know as a retired doctor I am almost certainly at increased risk and will require immunosuppressive doses of steroids if it recurs. I’m sorry but I have no idea how you get round this problem. Good luck!
It really is based on the medication you are taking and the severity of your lung condition.
Sorted now. Registered with the link on Gov.uk. Asda got in touch on Saturday.
oxygen on flights
I’m new here, I have COP amongst other things
My Proactive Battle with ILD (Interstitial Lung Disease)
The emotional impact of lung disease - written by Jamie who is on work experience with the BLF comms team
Hi
