Support for ILD

[NLRichmond]

I am writing on behalf of my partner (aged 80).  Through NHS negligence, he now has fibrosis of the lungs, is very breathless, depressed and isolated.  He feels totally abandoned by The NHS.  Is there any support available in the Edinburgh area?

[Caspiana]

Hello. I'm so sorry you and your husband are having a rough time. Whilst I can't give any concrete information I do hope someone can. Sending you love. xx

[Jessy11]

Hi, welcome to our forum. I'm so sorry to hear your partner has problems.

Has he spoken to his GP & been referred to a specialist? Does he have a respiratory nurse at his surgery. 

I've heard many times on here that patients have to insist on proper care for their condition. 

I'm in Scotland but don't know about help in the Edinburgh area. 

Tomorrow you could phone BLF. They will be able to help you. Phone no.  03000 030 555

Wishing you all the best & hope your partner gets the help he deserves 💐👋

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blf.org.uk/support-for-you/...

[sassy59]

Hi, just finding this wonderful site is a step in the right direction for you and your partner. I do feel for you both as I care for my hubby Pete who also has ILD as mentioned by the Royal Brompton in London. I had no idea until I read his notes. I am sure there is support in Edinburgh and surrounding area so I hope you do find that very soon. Get in touch with the BLF after the Bank Holiday and they may well be able to help. Take care. xxxxx