Port refusal on NHS

I requested a port (back in 22 when originally diagnosed), making my case based on a desire to stay active - running and swimming. It was approved. I know in the time since that some people have found it hard to get ports fitted in the same hospital due to either shortage of ports, or backlogs of people needing the procedure. Unlike a PICC, it needs to be fitted by an interventional radiologist in an operating theatre. Although mine was done under local anaesthetic, it’s still about an hour of theatre time, even if it doesn’t need an anaesthetist. The same theatres and radiologists are used for ablations, vascular procedures, stent fittings etc, which take higher clinical priority. Definitely worth pushing, as ports make a huge difference, but if there isn’t capacity, there isn’t capacity. If you do pursue getting one done privately, make sure the oncology unit will be equipped to access it. I still have mine (unbeknown to everyone at the time, I was already metastatic). 

The issue with having chemo through a cannula is epirubicin (the E in EC). It wrecks veins. 

I was told me that some NHS areas will only offer PICC line but some do both. Mine did but I opted for a PICC line as I did not want a port. Its a shame each area could not offer both but I suppose it depends on a number of factors including whether they have staff that are trained and available to install and use it, how long you would have to wait for installation, resources and costs. 

I had to wait about 2.5 weeks to have mine installed because there was only one specialist nurse available to do it. I also tried to get blood tests done at two different hospitals using my PICC line which was outright refused. They would not touch it because they didn't have the staff trained to use it. I had a small injection to numb the area, was in a small treatment room with one specialist nurse doing the PICC line installation procedure. Contrast this to a port installation. As Coddfish has mentioned, a port needs an operating theatre.

I can't see them preventing you from having the port done privately if that is what you wanted to do. I have seen both an NHS oncologist and a private oncologist and the private oncologist (who also works in the NHS and knew I was due to imminently start chemotherapy on the NHS) mentioned I could have had a port done privately.

It does suck but it does seem as if what you get depends on your area. Talk to your oncologist about it, fingers crossed for you they let you have the port.

Good luck, your team will try their best for you but unfortunately, they can only work with what they have and in some places sometimes all they can offer is a PICC line.

Hi, sorry to hear this is troubling you. You might want to chat to the lovely folks at Macmillan to see if they can offer any advice to your questions. They're available 8am to 8pm daily on 0800 808 0000. Best wishes