Hi Barneysmum

I can only tell you my experience, and that was that all major updates, discussions re treatment and decisions were done with either surgeon or oncologist & a breast cancer nurse.

I would double check with your BCN (assuming you have one) that the meeting with MacM nurse is as you think it is, could it just be a coincidental timing?  I would personally be very surprised if a MacM nurse would relay options as you may well have questions that they may well (as they are neither surgeon or oncologist) be unable to answer.

Best to put your mind at rest and get on the blower to ascertain exactly what the situation is, and if its not to your liking then make it known.

Good luck

Sam

Hi Barneysmum

I can only tell you my experience, and that was that all major updates, discussions re treatment and decisions were done with either surgeon or oncologist & a breast cancer nurse.

I would double check with your BCN (assuming you have one) that the meeting with MacM nurse is as you think it is, could it just be a coincidental timing?  I would personally be very surprised if a MacM nurse would relay options as you may well have questions that they may well (as they are neither surgeon or oncologist) be unable to answer.

Best to put your mind at rest and get on the blower to ascertain exactly what the situation is, and if its not to your liking then make it known.

Good luck

Sam

Hi Sam. Thanks that's a very useful response. I've been a senior nurse practitioner for 40 years and I've never relayed consultants decisions or MDT discussions to patients. I wouldn't dare,  because I don't know enough to answer queries about decisions made by surgeons or oncologists. I did say I wasn't happy but it's still going ahead. It doesn't help that I feel the Macmillan nurses are my gateway to the drs. They said they are my advocate but I didn't ask for one. I want to speak for myself at this stage. It's very hard to challenge something when you're so low and know you're utterly dependent on them. Thankyou for your kind response. 

by the way: to the last poster. I do know how MDT' s work. However this is not usual practice. 

Barneysmum

That's ****! Not only a most ineffective way of communicating but in no way puts the care of the patient at the centre of things.

It depends how much energy you have, and I know that can be lacking during these challenging times (I was always up for a fight...its my Yorkshire upbringing), but I would raise with PALs and also those in charge (i.e. CEO) as if you're always going to have to go through an advocate there is so much that could get misconstrued, unanswered, misunderstood and will mean that you are waiting even longer than you should.  I bet your hospital (as a lot of them do) mentions in their mission statement about excellent patient care or something along those lines...chuck that back at them!

I hope you have the wherewithal to challenge, for your & others sake, what is a pants (CRUK won't let me swear) situation - and unlike any I've heard of during my cancer time.

It may sound odd but may help to call McMillan helpline to explain the situation & get their take on the situation??

Sam

You will get to speak to the doctors - but at this time and this ongoing health crisis  

use the services on offer to address some your concerns 

The services work as a team, although they do vary across the county