Hello my Husband was admitted to our local hospital in August 2019 , with a huge fluid build up, whilst in there it was mentioned he had Heart failure and trace of asbestos in his lungs. On discharge there was no mention of any lung problems and he has been seen by HF nurses. 7 months down the line we finally got to see a consultant who said heart surgery wasn't possible due to his asbestos disease. He also asked who he saw for his respiratory needs, we said he had never been seen, and he wanted to know why not?. Consequently he referred him yesterday to a respiratory team ( the referral is ongoing as the secretary isn't in until Monday).I called the Lung helpline ,and will be speaking to a doctor from there tomorrow.
I think we are both in a state of shock ,and feel this time delay hasn't been helpful, has anyone any experience of referral /appointment time frames.
Our local private hospital has a specialist (ironically who works at our local hospital) they will see him , but would still prefer a referral, every minute seems a minute lost. Any suggestions would be gratefully received thank you
Hi so sorry that you and your husband are having such a distressing time. Do you think your GP might be able to help explain the cardiologist’s reluctance to consider surgery. The GP should have received discharge notes from August 2019 and the cardiologist usually copies the GP into any correspondence with other consultants.
Hello thank you for the reply, I have spoken to the consultant today, the problems seem to be that the lungs cannot cope with surgery or after surgery , he actually said he could die. We have been referred to a respiratory consultant ,which should be within 2 weeks. Until I get the appointment , who knows, it has been a complete disaster so far . We have the discharge paperwork , basically it says he will be seen by a community heart failure nurse. That has been the total limit to his treatment. The Monday meeting we have just had was a senior nurse , she clearly understood the issues hence us finally seeing a consultant 7 months on. Obviously had he been treated , he might have been feeling fitter/better now. Answers cant come quick enough xx
Hello today I received the findings from our consultant visit, it seems both lungs and heart have calcification , he has asked for an urgent referral this was actually done by another secretary on Thursday, as it is within the same hospital I am hopeful it was seen on Friday. I will be calling Monday am for an appt that I am hoping is imminent , it already feels 7 months to late … best wishes
So sorry to hear what you both have and are having to deal with. There has been a lack of communication and duty of care somewhere, which is unacceptable.
Hello thank you for the reply , we had a call from the consultant today, basically the problem seems to be that the lungs cannot cope with surgery , and post surgery. I am so angry and sad that my Husband has most likely suffered unnecessarily. The referral should give us an appointment within 2 weeks, I called our local spire hospital ,they can see him very soon, but they would prefer a referral. Tomorrow someone from the lung foundation is going to call me , to have heart failure diagnosed was bad enough, this has totally stunned us . I will be dealing with this as soon as, believe or not I tried our patient helpline , they will get back to us within 3 days. Thank goodness for people like you
Please let us know how you get on. Wishing the best for your husband and of course for you and you get some answers as well as treatment for your dear husband.
going private on Monday. Initially given May 1st from our "urgent referral", after I complained was given 12th March , really angry . Hopefully get some treatment or support on Monday xx
Hello I had a letter with the consultants findings today , it appears there is a lot of lung and pericardium calcification . We have been urgently referred to respiratory , this has been done by another secretary . As it is within the same hospital I am hopeful it was seen on Friday. I will be calling on Monday am for an update. take care x
Yes he would prefer. Forget his prefer. Ring his secretary for an appointment. I take the view I am paying so do not need a gp referral. You are the customer.
Hello we have a private consultation on Monday, was given May 1st for our "urgent referral " or March 12th when I pushed through the NHS , really thought they would have pulled their finger out, after they made a comment in August , then left it without treatment
Hello thankyou for the reply, I know exactly what you mean, I think they want that because he has already had x-rays , mri , ct scans, and maybe they can use them . Not sure if you have seen latest news he is now a priority at our hospital, supposed to be seen within 14 days. Really not hopeful as our service has been so bad. If the appointment arrives , but is a good while away (I wouldn't be suprized ) , can I ask for his scans etc to use at the Spire?, actually don't mind paying out initially, but will be financially limited at some point . Best wishes and Thanks
Hi, Appointment delays are common place as the NHS is short of funds and staff. It is not that unusual for the private physician to also work within the NHS. If you prefer to have an early report it is best to stick with the "Private" route this will at least give a speedier service and if needed treatment. it will likely be the same treatment that you would otherwise get from the NHS but the difference in time is quite considerable.
Hello I received our consultants findings today alongside an emergency priority referral to respiratory, I will be calling them on Monday am. Thank you for the advice , will let you know what happens
I hope things move forward really quickly now. I can understand why you are gutted. Make sure the doctors know you’re concerned about the delay and ask them to assure you that your husband will receive outstanding care from now on.
called respiratory secretary today , they said referral had gone to bookings, bookings hadn't got any advice ,as it has to go to appointments, appointments are still waiting for the respiratory dept to let them know.
Then I got through to patient line , the lady was fabulous , I went all the way through the saga from August onwards. Tomorrow she will phone me with appt. Also she will formally complain about neglect/failure to diagnose and treat both conditions. Thanks for the support
After been given an initial urgent referral for May 1st , later March 12th , have to say am seeing the same consultant on Monday pm at our local private hospital, disgusting , but I have called this Dr secretary twice NHS, and haven't had a reply?. Hope all okay with you?.
That is unacceptable. I too had to go private due to a delayed diagnosis so I share your frustration. It was worth spending the money. If your Consultant is decent, he will fast track you back into his NHS list. I hope it goes well.
Thank you for that, it seems terrible that when people are ill they are treated so badly. Not particularly expecting good news, I just want something to help him, and make him feel positive ,for a change x
Don’t forget that your husband had a choice of where to be treated. If you live reasonably near to aheart/lung centre then that might be sensible as they have the latest technology and are up to speed on research and trials
Hi thanks for the email, the consultant is the one who goes to all our local nhs hospitals as well as private, he has an interest? in breathing and one of the techniques he performs is some kind of lung drain?. We are really in limbo as we haven't got a diagnosis yet. Ironically have just received an appt to see the same consultant 04/05 at our local hospital x
Thank you, lets hope that this Dr listens, I have already called the patient line, there is a three day wait. Really hope they call tomorrow, I will call respiratory specialist secretary first thing xx
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I have joined this forum because my Husband has lung disease he was diagnosed some years ago with Pleural Plaques due to asbestos exposure
What can we expect
Update - cavitating lung lesion 3.7cm
Stages of COPD
Late diagnosis of asbestosis
