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South East - portacath on NHS?

19 REPLIES 19
elinda45
Member

Re: South East - portacath on NHS?

Well done CM! Sounds like he didn't know the system himself.
Do hope it all goes well.
Elinda x

ChoccieMuffin
Member

Re: South East - portacath on NHS?

Got appointment this afternoon - for Monday! I think my request was helped by me forwarding a Freedom of Information request that I'd found on the PCT website (buried!) that stated clinicians can prescribe portacath if they want to, there is no PCT rule that prevents them from doing it. So despite him saying he'd have to fill in forms and ask and he might not get permission, I pointed out to him that he didn't NEED permission!

Princess2345
Member

Re: South East - portacath on NHS?

Hi
Yes mine was also on the NHS at Northampton General Hospital.
It's not routinely done there but after I asked for one due to having 2 small children and Herceptin for a year they agreed.
I have really tiny veins and it has been a godsend.
Good luck,hope you get one.
Tracy

Bboonie
Member

Re: South East - portacath on NHS?

Mine was on the NHS in North London. The Marsden and Brompton Hospitals also do them on the NHS.

I got mine at North Middlesex Hospital.

Marian

ChoccieMuffin
Member

Re: South East - portacath on NHS?

A further update on portacath questions.

I am still dubious about getting it on the NHS so I'm looking at trying to find out about getting it done privately. Someone (can't remember who - Reeb?) mentioned a cancer clinic up in a well-known street in London famous for doctors and said she'd had it done for £750, but when I got a quote from what I think was the same place, it was around £2400.

I was having a chat with a German friend of mine whose brother just happens to be an oncologist (isn't it funny the things you find out about people!) and she has asked him how much it would cost in Germany as she was shocked at that price, and the answer came back that they use a portacath for ALL their HER2+ patients and most of their other chemo patients too, and it costs, wait for it, €700! So if I add in the cost of return flights (£90) plus two overnight stays because the flight times are middle of the day, it comes to less than a grand. Darn sight better than the £4k the oncologist told me about to get it done in Guildford. Her brother was shocked that they can charge so much.

So... if I don't get anything sorted quickly on the NHS, I'll become a medical tourist and have a trip to Germany in a week or so!

JulieD
Community Champion

Re: South East - portacath on NHS?

Glad your GP is on the ball, hope it all goes well, good luck with treatment.
Love Julie

elinda45
Member

Re: South East - portacath on NHS?

Hi CM, good that you've got a strong GP on your case! Hope you can get this done and that it all goes well.
Elinda x

hatty
Member

Re: South East - portacath on NHS?

all sounds good so heres wishing you a bit of good luck.

ChoccieMuffin
Member

Re: South East - portacath on NHS?

Thank you again for your responses, and for the specific info you gave.

I saw my GP today and explained the situation (IV stuff for a year and small veins), what I wanted done (portacath on NHS) and what I had been told by BCN (my hospital doesn't do it on NHS but other patients have had it done privately) and she was very supportive about my request. She will be writing to my surgeon to ask when IV treatments are likely to start, looking for confirmation that that hospital doesn't do them on NHS, and that she wants to refer me to the Royal Marsden for a portacath insertion. So we'll wait and see what happens. I'll keep you posted on progress with this, as I feel strongly that patients who have to have long periods of intravenous administration shouldn't have to go through the additional trauma of being stabbed repeatedly in order to get the poisons in.

This thread was really helpful as it saved the need for my GP to dig around for information as I was able to give it to her myself. What a brilliant resource you all are! 😄

elinda45
Member

Re: South East - portacath on NHS?

I hope you can get this done. it does make a huge difference. I was going to chemo sessions prior to having it not knowing if they'd be able to find a vein at all. I also developed multiple thromboses in my arm from the chemo and couldn't tolerate a PICC line in the other.
Good luck, Elinda x

ChoccieMuffin
Member

Re: South East - portacath on NHS?

Thank you all for your responses. I'll be printing out this thread and bringing it to my GP tomorrow, I really do feel it will make a big difference to how I get through my treatment.

CM
x

elinda45
Member

Re: South East - portacath on NHS?

Hi CM - Yes. I had mine fitted NHS at Queen Alexandra in Portsmouth (Mr Sutton). I had a general anaesthetic for insertion and then a local to remove.
My Onc did have to push hard to get this done in time though.

I had a general because the surgeon felt I'd been through enough and didn't want me to have endure him rooting around. I was fine with that.

Lily200
Member

Re: South East - portacath on NHS?

Hi
mine was done through the NHS at Broomfield hospital in Chelmsford, Essex. They offered it to me when my veins headed south on my meet the chemo team appointment. Broomfield is a big Bc centre now and people come there for recons as well from 3 or 4 different counties. A cardio vascular surgeon put my port in under a general and took it out under a local before I started rads. Being awake was yuk as I was 100 % bright eyed and bushy tailed with a sheet over my head but no choice and it was quick.
Good luck and I am really glad I had it as my veins are so co-operative compared to my friends', when I have any blood tests/checks
Lily

JulieD
Community Champion

Re: South East - portacath on NHS?

Hi,
I haven't got a port but I know they fit them at St Mary's in London and guess they probably do at the other hospitals in the same Trust ie Charing Cross.Don't know if done under local or general, seems to be down to individual DRs. I hope you find somewhere convenient. xx

Tina45
Member

Re: South East - portacath on NHS?

Hi, GA also for fitting, removed in theatre under local. Not NHS. X

dawnhc
Member

Re: South East - portacath on NHS?

Hi CM,

The Royal Marsden, Sutton and London Fulham Road do it on the NHS and I think they all prefer general anaesthetic.

Dawn
xx

finty
Member

Re: South East - portacath on NHS?

Not on the NHS, but under a general - seems to be down to the individual surgeon, mine refuses to do them under local.

Bboonie
Member

Re: South East - portacath on NHS?

Had mine done under local anaesthetic under the NHS at North Middlesex Hospital in Edmonton North London. I was offered sedation with it but declined it.

Best thing I ever agreed to.

Marian

muffett
Member

Re: South East - portacath on NHS?

Sorry I can't help, mine was fitted in Spain, though I didn't have to pay.

I was just under a local, was awake for the whole process, to be honest, not nice, it felt like I was being got at by Aliens, couldn't see them as they put a sheet over my head, but kept feeling the pressure etc. If given a choice I would advice let them knock you out!

Apart from that love it, no more 9 or more attempts to get IV's in!

xxx

ChoccieMuffin
Member

South East - portacath on NHS?

Thank you for your positive replies regarding portacath but I have another question.

Where did you have your portacath installed, and was it under general or local plus sedation?

Has anyone had a portacath installed on the NHS in a hospital in the South East? Or within a few hours' journey of the South East?

I am hoping to get my GP to refer me to an NHS hospital for portacath and it would be very useful to know of any hospitals where it is done so would like to have some specific hospitals I can point her at.

Thanks

CM
x