"My late brother and the late diagnosis"

My late brother and the late diagnosis of his idiopathic pulmonary fibrosis

In November 2018 my brother went to his GP complaining of severe shortness of breath in that it was making everyday things very difficult for him to complete. His wife had died of cancer a few months before and everyone thought it was caused by the stress of looking after her. The doctor referred him for a CT scan. By February/March 2019 he had heard nothing from Antrim Hospital so I phoned the hospital to find out the waiting time and was told it would be a year.

I took him back to the doctor as he was getting much worse. The doctor referred him urgently and he got the CT scan in April. As soon as the results were though which indicated pulmonary fibrosis, the doctor referred my brother urgently to the City Hospital respiratory clinic. I phoned the City Hospital  after a few weeks to find out how long it might be for an urgent appointment and was told that the request had not been triaged yet. I phoned again a week later to be told the same thing.

After 3 weeks with me phoning every few days, someone eventually had the sense to see that something was wrong as the request should have been triaged within 3 days so she put the request through to another doctor. I was told it could be the summer June/July before he was seen as an urgent referral and meanwhile my brother was getting worse. I spoke to the consultant's secretary to say how bad he was and he got an appointment in early June.

At that appt we discovered that he had IPF since 2015 and it had been highlighted on a CT scan done at that time but had not been picked up at his doctors surgery and no hospital referrals or treatment had been arranged. The staff at the city hospital arranged urgent and immediate oxygen therapy, a trial drug and and a care package as well as house visits by OT's and district nurses  from both Beech Hall health Centre and the Shankill Wellbeing Centre in Belfast who were very good and very attentive as they realised how seriously ill he was.

Their care and that of the City Hospital chest clinic staff was excellent. His oxygen requirement increased rapidly and the nurse dealing with him was wonderful and so helpful and supportive. She warned me that he wouldn't last long but I realised this myself and had done for many months. Just a few days before he was due to have palliative care, he passed away peacefully at home in September 2019.

I spoke to his GP afterwards who was shocked and apologised and said they didn't know how my brother's condition had been missed 4 years prior. They had been treating my brother for another condition at the time when they thought he had cancer and the doctor thought that with going between so many consultants and different hospitals, information had fallen between the cracks. However, I feel that this oversight was the responsibility of the surgery and the GP/s in that they couldn't have read the CT scan notes which I saw at a later date and it was very clearly stated.  

I know that my brother would have died anyway with IPF but he could perhaps have had a few more years of life and been more comfortable and prepared if he'd had the new drug therapy when the IPF was first highlighted by the hospital CT scan in 2015 but what annoyed me was how when the failure of his diagnosis was discovered, all the doctors and consultants went silent and I could tell by their silence and reticence to discuss the issue that something was wrong. I also think waiting 1 year for a CT scan is scandalous and I also think that there should be some sort of follow up procedures to ensure that referrals are triaged within the normal time frame and allocated to consultants so that conditions can be assessed and appointments given within a reasonable time frame.