Herceptin in Oxfordshire area
Herceptin in Oxfordshire area Dear all,
A some of you might already know, we’ve been trying to get herceptin sorted out for my partner, Juliet, for some time now. Juliet’s treatment finished earlyy July so up against it a bit. Saw Dr L in Oxford just before Christmas. She is spearheading attempts to get funding for Ox / Bucks / Berks area from pct. Presenting case to the pct at end of February - though she feels that this will probably be unsucessful and pct will hold off funding until NICE decision. She was very supportive of Juliet needing the treatment - and agreed for us to start by paying for treatment and go back across to NHS when funding comes through. She is currently costing up the options of how cheapest to do this. She did feel that it would be worth us lobbying our mp etc prior to the February meeting - so we’ll get going with this. Just wondered if anyone else in same situation in this part of the country - and whether we can join forces!
Sharon
Hi Sharon Sorry to hear that things have been so difficult.
One thing I would advise is that your oncologist check out Healthcare at Home early on, since they seem generally to be the cheapest for providing the bulk of the sessions (see herceptin at home thread).
The first one or two sessions will need to be at a hospital.
Herceptin Hi Sharon
Good luck with your quest. You can get email links to all MPs from the Parliament website - there is lots of stuff in Hansard (reports of the debates in the House of Commons) - 1st of November debate has lots of speakers (we quoted some of it in our ongoing PCT appeal).
Not in your general area - but interested to see that yet another part of the “M4 corridor” has turned it down (as has Bristol,Bath and Swindon, althought the latter are currently going throught the courts)
M4 Corridor Perhaps a campaign march up the M4 corridor to highlight the postcode lottery on Herceptin availability is in order?
I could do with the training in preparation for the Moonwalk in May.
thanks Thanks everyone- I’ll check out Hansard etc.
Christine - I had thought I’d posted a response to the thread on healthcare at home, but I’m obivously not a technological wizard since it is not there! I was having a bit of a moan about Dina R - and agreeing with Jane RA. Think Dina was getting her herceptin via her private health insurance - though she wasn’t making that clear.
Dr L is pricing up healthcare at home as one of our options, others include local chemo suite or local private hospital. I guess we’ll need one of the hospitals for first treatments. Does anyone know the likelihood of an allergic reaction and what happens if one occurs?
She also mentioned having an echo cardiogram (spelling?!) 4 times over the year. Doesn’t need any other scans prior to treatment. Is that normal? Juliet has recently had chest x ray and blood tests to check out a pain in her chest / lung. Thankfully everything came back clear - though took a lot of chasing to get results!
Sharon
Herceptin - funding update Hello all,
Just wanted to say that we had a call from the doctor this week. Had costings for local private hospital and local NHS hospital. Private hospital came in at £20,000 and NHS hospital £30,000. Doctor was really angry at the mark up from NHS hospital (drugs cost is £17,000). Anywa, you can guess which we are choosing. Have to pay extra for the echo cardiograms - about £250 each, and will need to do this first. Hope Juliet can get started by end of month. Doctor had tried Healthcare at Home but no response as yet.
We have been waiting for costing before writing to MP - and will be interested to see what he makes of it. Local PCT very heavily in debt, so I assume they think it is ok to make a few bob from a mug who is willing to pay! Anyway, doctors have been lovely - and Juliet will continue to be monitored by the NHS oncologist - every six weeks.
Good luck with anyone else trying for herceptin!
Sharon
Herceptin in SCOTLAND Hi
I am not too sure how relevant this will be to you or indeed if the info I have been given I have interpreted correctly.
I was checking today my her2 status and I live in SCOTLAND,my results are not back yet
But I was told in SCOTLAND the problems with perscribing were not to do with cost but with Licensing
I was told it was only licensed for use for patients with mets,but this will change in the spring by which time my results will be back and if her2+ I will definatly be given herceptin.
I hope this info may help
Love
Sarah x
£20,000 is excellent That’s actually less than healthcare at home have been charging me (£27,000 and I am 55kg).
Take care,
Christine
Cost Ditto to ChristimeMHs post. £20,000 sounds good to me. My PA cost for Herceptin via Healthcare at Home would be about £27,000 (using 3 vials per dose), just grateful I don’t have to fund a full year.
I posted a bit about costs on the Herceptin at home thread.