No info on lung condition

[Scairns]

My husband unknown to us had lung fibrosis and was being treated for COPD. After a hip operation he sadly passed away with lung fibrosis but we were never told of this condition only the COPD. I am still tormented why no one had told us, 😪

[Katinka46]

What outcome do you want? That may sound like an odd question to start with, but it will influence the choices you make. An understanding of what happened and how the wrong diagnosis was made, when the correct one was made and why you weren't told? An apology from the doctors/hospital involved? Or do you want to go for litigation? There will be a PALS group at the hospital, (Patient Advice and Liaison). They can be very good. You are entitled to ask for all the records kept by your GP practice and any hospitals that he attended. The hospitals have 42 days to organise the documents. They do charge for that service. You could ask a solicitor to do that, they will charge much more. Your local CCG (Clinical Commissioning Group) will have a complaints manager. If you are not satisfied with that then you can take it to the PHSO (Parliamentary and Health Services Ombudsman).

Sorry if it all sounds daunting, to be honest, I can't pretend that it is easy. Doctors are still very poor at being honest. Get as many people on side as you can, family and friends. You will need their support. Record all conversations with officials and make notes.

Let us know how it goes.

Kate

[Hidden in reply to Katinka46]

Great reply Kate. x

[Hidden]

G'day Scairns

My wife, Susan, was diagnosed with IPF in May 2014. after the x'ray her GP gave her a slip of paper with Idiopathic Pulmonary Fibrosis written on it and suggested Susan go home and google it. The GP had never had a patient with this disease.

We were sent to a "sleep" Dr, and he booked us in to a specialist hospital for further tests for 1 week. After the results came, in the 6 doctors who were monitoring her condition were divided in their opinion. 3 confirmed IPF the other 3 were not convinced. These were lung specialist doctors.

The sleep Dr then put my wife on Chemo for 3 months,causing her liver count to rise from the norm of 20 to over 400. We dumped him and luckily for us we found the "right " Dr.

Susan is now 7 months post Tx.

Mis-diagnosis was a common event then, but with the better checks now in place the hospitals can Identify the disease more accurately.

I feel for your loss and wonder if the hospital staff knew of the correct diagnosis at the time.

Will (Australia)

[Helen6]

Hi Scairns, it is difficult to be absolutely positive about fibrosis without a biopsy which is usually not recommended. It took a while for me to be diagnosed with IPF and in the end, like Will's wife, it came about through a team decision. There is not a lot that can be done about fibrosis and it may be that your husband's treatment would have been the same anyway. I hope the hospital answers your questions but don't beat yourself up - I am sure you did your best for your husband.

Take Care,

Helen

[Foxy79]

Hi Scairns

I'm foxy79 I'm soo sorry to hear about your husband my deepest condolences that was wrong not telling you I fully support you and I'm sure everyone else would as well it's very upsetting I feel you as for illness I live with it I'm 36 years old I have asthma broncecictsis respiratory type2 I'm on Bibep machine 24/7 oxygen cure is lung transplant all this started by a foreigner past tuberculosis to me that damaged my lungs to much when it came to light my concern is why don't they get medically examined? Well if you need any support or advise please give us a text hope you find peace take care Scairns

[Offcut]

Sorry to say that sometimes these things can be missed mainly becuase they look only at one thing at a time and very often will not change anything that has been put in place unless a major change in wellbeing has happened.

One of my lung consultants told me that when she was in her last year (1980) of medical training her teacher told the class "Asthma was all in the mind?" i hope what you are looking for goes well for you.