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How does your post-transplant 'hotline' work?
I've seen quite a few post-transplant patients referring to a 'hotline' they can call whenever they have any concerns to get connected asap to someone suitable at their transplant centre, and wonder how these work.
Whenever I have an issue, I call the day unit and ask to be put through to the transplant fellow, though if he's not available it can be a bit hit and miss as to whether/when he gets the message to call me. If it's urgent (but not quite urgent enough to rush to A&E), I'll try to get hold of someone else with knowledge of my case, such as the transplant co-ordinator, the duty registrar or a senior nurse, but generally speaking the responsibility for getting hold of someone suitable lies on my shoulders, particularly when the usual receptionist is away... At night or at the weekends, I need to ring the switchboard and ask for the on-call haematology registrar.
Presumably this is not the case if you just have one number to call? I'd like to talk to my unit about the idea, as although I've always managed to get hold of someone to talk to in the end, it strikes me as a much safer and more comfortable system if you're not having to ring around different numbers or waiting anxiously for someone to phone you back, hoping that the message has been passed on.
Before I talk to them, though, I'd like to know how it works in practice for those who have been given a single number to call: who picks up, and do you still sometimes have to wait until someone with relevant knowledge is back from their lunch (for example)?
Whenever I have an issue, I call the day unit and ask to be put through to the transplant fellow, though if he's not available it can be a bit hit and miss as to whether/when he gets the message to call me. If it's urgent (but not quite urgent enough to rush to A&E), I'll try to get hold of someone else with knowledge of my case, such as the transplant co-ordinator, the duty registrar or a senior nurse, but generally speaking the responsibility for getting hold of someone suitable lies on my shoulders, particularly when the usual receptionist is away... At night or at the weekends, I need to ring the switchboard and ask for the on-call haematology registrar.
Presumably this is not the case if you just have one number to call? I'd like to talk to my unit about the idea, as although I've always managed to get hold of someone to talk to in the end, it strikes me as a much safer and more comfortable system if you're not having to ring around different numbers or waiting anxiously for someone to phone you back, hoping that the message has been passed on.
Before I talk to them, though, I'd like to know how it works in practice for those who have been given a single number to call: who picks up, and do you still sometimes have to wait until someone with relevant knowledge is back from their lunch (for example)?
Best Answers
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Hi George
In my case I was diagnosed at my local hospital with bone marrow failure and referred in days to the local cancer treatment centre, The Christie, Manchester. On the first visit I was given a 'Hotline card' with a 24 hour telephone contact number. My consultant made it quite clear that I should contact them with any problem or concerns.
We have used the service many times and as recently as last week when I was admitted for a couple of nights. Having made contact at about 630pm.
Usually my wife would ring and always be spoken to by a dedicated Hotline nurse, she would describe the problem and if I was fit I would speak to her. The nurse would then contact the transplant unit duty doctor or senior staff member and then always within 30 minutes we have had a reply back from the nurse. We were either reassured, advised to attend clinic or if out of hours attend the hospital admission unit at the Christie. I can honestly say that when we have arrived at the hospital we have been met by staff expecting us, proof that the communication line works.
It is without doubt so reassuring to have this support at the end of the phone.
Good luck with trying to get a similar service.
Peter -
Hi George,
Mine wasn't so much a hotline, but I was told that if I had any issues to call the transplant unit directly and speak to the nursing staff. They would either advise me on what to do or contact the consultants for further advice.
Thankfully it's not a facility I've had to use and I'm hoping I'm past the stage that I should ever need to use it, but it's reassuring to know that the facility is there should I need it.
How are things going with you?
Steve -
Oh, and things are generally going pretty well, Steve, although I've currently got parainfuenza 3, which is annoying but not too concerning (according to the doctors). I came off the ciclosporin a couple of weeks ago, with no negative consequences, and am enjoying the easing of restrictions!
George
Answers
It's always interesting to read / hear about how things are done differently in different hospitals – I've always been impressed by and grateful for the care I've been given, but any sharing of best practice and even slight improvement to the process can only be a good thing.
George