What level of contact do you have with your consultant?

[ck101]

Just a quick one for you all as considering changing Pulmos. I'm planning to go back to the one I saw in 2004 but as I remember he never responded to any follow on mails I sent him, generally it took two / three weeks to get an appointment and that was the only time we spoke. His gate keeper or receptionist always had an excuse as to why he was unavailable. I remember at the time being pre-diagnosis, anxiety was running high and being quite frustrated.

So question for you all is how / often do you interact with your Pulmo, do they respond to emails or texts. Do you have their mobile number or maybe you can pop around to their house for a chat Only joking of course.

[Tia4209]

In the UK we can wait 6- 12 months for an appointment with a Respiratory consultant and that was pre covid so probably longer now. unless we self fund a private consultation. Are you in the US.

[ck101 in reply to Tia4209]

I called a few pft labs to check wait times , they vary from 6 weeks to 18 months. I’ll be picking a hospital with the shortest wait which ironically has the best lab. If you go private here they can then refer you to any hospital for tests.

If you go public it’s likely you’ll be dealing with a Junior doc as part of a team working under a Professor, you might get to see the organ grinder if your case is particularly complex or you’re about to drop dead in the coming weeks.

My old consultant has a wait time of 36 months in the public system. He’s a good but not 36 months good. His specialty is also an orphan disease, most of those on the wait list either have COPD or Asthma. Crazy!

[Hidden]

As indicated by Tia, we don't get to pick and choose consultant /pulmo unless we go private. When condition is stable referred back to GP.

[ck101 in reply to Hidden]

Yes I’m in Ireland and going private, as with the UK there’s delays in the public system due to COVID.

[Karenanne61]

I have just started seeing a new, to me , consultant. She is very pro active. Responded promptly to an email and arranged for respiratory nurse to ring to check my progress on steroids. Her secretary gets things done and is lovely to chat to. I am seeing her next week for the second time and feel positive.

[ck101 in reply to Karenanne61]

Sounds like your onto a good one there !

[Karenanne61 in reply to ck101]

I think so too. Just hope I can stay with her.

[MoyB]

I have been with the same consultant since 2016. I saw him privately for the first consultation then he transferred me to his NHS list. I usually see him once a year. I put my trust in him and, on the whole, have been very happy and confident to follow his advice.

Unfortunately, however,I am feeling a bit let down by him at the moment.

I have been experiencing a 'bad patch' since the end of May. The respiratory nurses have emailed him twice and my GP sent him an email marked 'For urgent attention', but as far as I can ascertain he has not responded to any of them directly, and has not been in contact with me. I have received an October appointment for a lung function test at the hospital which he may have instigated or, as it was due over a year ago, it may just be the system catching up.

My faith in him to keep me well has diminished a bit. I hope to see him sometime before the winter but am not holding out too much hope.

xx Moy

[ck101 in reply to MoyB]

Yep, covid diverting their attention, a situation that will only get worse if John Campbell is correct

[ck101]

I personally think a GP with a specific interest in this area is a better option, if you can find one!

[Mavary]

I think I would have made them stay there until I had phoned the company. I had a shopping delivery this morning from Sainsbury. I asked if he could put it in the kitchen for me and he did. He even emptied the baskets and put it on the top of my cupboards for me. So there are some good people in this world. There’s no way I could do it with fractures in my back.

I hope you have phoned the company now and told them how disgusted you are with them.

[ck101 in reply to Mavary]

Wrong thread Mavary

[Mavary in reply to Mavary]

Sorry I don’t know how that happened.

[Walkwalkwalk]

I had a consultant appointment in March which was appalling and really upset me at the time. The consultant on that occasion was clearly following a check list to ensure that I and my family understood that I was at very late stage IPF. I wrote an email to him outlining how I had felt and the effect it had on me.Not because of the content but how he treated me. He did not respond but at yesterday’s appointment he did say that he had read it and amended his presentation of late stage to patients.

We have now agreed on the way forward which previously had felt like being written off and was not a good place to be. This is all part of the NHS.

I know that I have been lucky in getting a good outcome and I hope that it helps other people.

[ck101 in reply to Walkwalkwalk]

Sorry to hear that WalkWalk and thanks for your input, I wish you the best on your journey!