"Lots of tests but no action taken"

I am a carer for my older brother who has heart problems and a progressive lung condition .

We were referred to papworth hospital by Milton Keynes hospital for investigation into a undiagnosed lung condition in early 2016

We have had approximately 10 appointments at the hospital which resulted in numerous blood tests CT scans walking tests breathing tests but still we had no diagnosis the possibility of steroids were discussed wih the doctors to try to slow the progressive conditions down but the doctors were very reluctant to offer these due to there side effects

In may of 2017 we had another appointment at the hospital after this appointment we were told that they would review us again in 6 months

But after 6 months we were not contacted with an appointment

We had to try to contact the hospital ourselves which was very difficult because we were passed from pillar to post eventually getting an appointment in February 2018

At this appointment and after many more tests we were eventually put on steroids treatment as my brother had gotten progressively worse

After 12 weeks of steroids there has been no improvement in his condition he is now on 24 hrs a day oxygen and now doctors have said he will have to live with this condition as there is very little the can do

I believe if some kind of action was taken sooner like a lung biopsy or was given the steroids at the beginning of 2016

We would have had a better chance of an improvement now to has been giving a short life span