Since my initial dx under the NHS in Oct 09 I have had all my treatment privately, paid for by my insurance company, AXA PPP. I have bone mets, have finished chemo and rads, and am currently having IV Zometa and Avastin every 3 weeks. I am due to start Femara (letrazole) in September. The Avastin was only approved for one year, which I can understand as it is extremely expensive. But I received a letter this morning saying my Zometa would no longer be covered as they don’t pay for long term treatment of conditions - I imagine the Femara would fall under the same category.
Has anyone else had a similar experience, or been able to get coverage for longer term treatments? Also, does anyone have experience of mixing NHS and private treatment? My understanding is that it wasn’t possible until recently, and I have no idea how it works. Would appreciate any advice. Thanks
Only experience i have is surgery after initial diagnosis - the wait was soooo long 5.5yrs ago I just went privately to have the lump out and lymph sampling. After that, I had one follow up appt at the private hospital which was included in the price (!) and after that, everything was on the nhs.
I had the same surgeon I would have had on the NHS.
And I never had any drug treatment privately.
If the Zometa is something that’s offered on the nhs to patients in your position, I don’t see why you can’t benefit from this alongside private treatment. There’s this ‘two-tiered’ thing going on now, isn’t there? xxx Jane
Until recently my treatment was done through AXA. In reality this meant that I was treated in the NHS hospital by NHS staff, using their equipment also for things like routine scans! The only thing done in the Nuffield were oncologist consultations. They had agreed to fund lapatanib for a year for me (it transpired not to be necessary, as it didn’t work anyway, so we stopped after 5 cycles). They were also giving the same ruling for herceptin (which I’m now back on), so we felt we would be as well to move everything to NHS in the meantime, using AXA when necssary. Avastin will likley be next up for me, so I’ll slip back into the private system for this.
I’m not suprised they won’t fund Zometa, as they do make it clear that they don’t fund maintenance type of drugs, only those needed for active treatment. It makes sense, but it’s still frustrating.Really can’t see you’ll have a problem with this-your oncologist under AXA will likely be the same you would have under NHS.
Thanks Elaine - that’s reassuring. I think the thing I will miss most is the access to my onc that I get going privately - I guess they don’t give their mobile numbers out to HNS patients! Plus my private hospital is a 5 minute walk away - I have been a little spoiled. Oh well, it was nice while it lasted.
I too miss the longer consultations-but in fairness when we need the time, he still makes it. I still see him every 3 weeks, as he sees secondary patients, new diagnoses, and patients undergoing chemo-follow ups for those who have completed treatment are seen by a member of his team. So unless he moves in the future,he’ll be in charge of my care anyway. Think I’ll continue to use AXA for other things-I need 2 yearly colonoscopies, for example-and if the pleura ever needs drained again, I would opt to have it done privately too.
I’ve held on to his mobile number! I haven’t used it in nearly 3 years, and probably never would (I have numbers to cover daytime/overnight emergencies)-but don’t think he would bother if I did use it!
I had forgotten that NHS oncs generally see their patients with secondaries themselves - I had seen so many posts on here of ladies seeing someone different each time. I’m feeling much happier now - thanks Elaine.
My treatment was with AXA PPP for first 2 years including op,chemo,rads and yrs 1 and 2 mammos.I now opt to pay for mammos and consultations but any treatment will have to be NHS.Everyone involved is happy with this.
Valxx
Hi Ladies
I too am fortunate to have insurance. However like most people if I get secondaries I may get Avastin, Lapatinab etc for a specified treatment period but I wouldn’t get anything classed as maintenance therapy. I think this is pretty standard no matter who your provider is.
Horace that is great that you have come to your arrangement of mixing services. It seems to me the most sensible option choosing to pay for private stuff if you want. I have a friend who has been treated completely by the NHS and yet booked a private appt to see her onc as she wanted to discuss something specific with him and was told she wasn’t allowed to, even though she was quite happy and willing to pay for a private appt with him? I find this approach strange, surely it’s her prerogative to see who she likes if she is willing to pay??
I find the whole co-payments argument really frustrating whereby people who have no choice but to pay for drugs that NICE have declined funding then have to pay for all their care including the administration of such drugs and subsequent hospitalisations if they become neutropenic. I recognise self funding is out of the question for many people but there is a percentage of people out there who could just about stretch to the monthly outlay of the drugs alone but not a chance they could afford anymore and therefore their only choice is to go without (no choice). To me this is very very wrong…
I am with AXA PPP too and am on Zometa. AXA have told me I can only have 5 more Zometa and then I will have to get it on the NHS. My PCT have agreed to fund Zometa as it is £195 per month, exactly the same as Bondronat which is the tablet alternative that the GP was happily prescribing (but I prefer 4 wkly Zometa because its less hassle in the mornings as I take Cap/Lab too). The only thing I will have to pay for is having Healthcare at Home come to my house to administer it. However if I wanted to attend a hospital for it, I could easily get it on the NHS, its just that my Onc is in Newcastle, which is 45 miles from where I live and under a separate PCT and I would rather pay for someone to come to me at the moment because my mobility is poor due to recently having 2 ops for my bone mets.
Thanks Linda - that is very helpful. Have you been able to find out how much the home service will cost? My father had his chemo with H at H and was very impressed. At the moment I have my zometa with Avastin, and they always do bloods and urine first - do you know if this is required when it is just zometa? I only ask because looking at my AXA bills the path report seems the most expensive element, and unless I am reading the bill incorrectly the drugs are only £65!
Do you know how your relationship with your onc will work when the payments stop - will you still see him/her privately and just get the treatment on the NHS? I am not sure how in practical terms the two services combine.
Finty-one other practicality to keep in mind. I was immensely frustrated at having my notes spread over 2 locations, when I was having private consultations, yet treatment in the NHS hospital-even though the treatment was being funded privately! At time notes were needed in one location-yet were in the other hospital-very frustrating. Nor were they always complete and up to date because of this. I would seriously advise if you are being treated in the NHS you have consultations there too. Yes we all like the nicer surroundings/less rushed consults in the private sector. But with ongoing treatment for secondaries and consults every 3 weeks, unless there is a major problem to be addressed the shorter consults are fine. Mine still tend to last in the region of 20mins+, and I’m never rushed. He takes as long as we need-but we spend less time on pleasantries/chit chat!
A very good point Elaine - I’m coming to the same conclusion. The only problem for me is that my onc doesn’t have an NHS clinic in my local hospital, so I will either have to travel quite a lot further or start again with a new onc - not a disaster, but as you say we get used to the little luxuries. My private hospital is only 2 minutes away (sniff).
Do you know if the consult every 3 weeks is standard for all patients with secondaries, or just if you are having more active treatment? I wasn’t envisaging been seen that often.
I suspect the 3 week consult is only if you are having active chemo-or possibly rads. I had a 2 month break earlier in the year, from consultations when I was only having pamidronate and herceptin. However, this will obviously differ from one consultant to another.If your onc doesn’t have a clinic in the NHS, then no doubt he can recommend someone whom he feels you will match well. It really wouldn’t make sense-nor even be practical/allowed(?), to have an onc responsible for your case who isn’t empolyed in the clinic you want to attend.
In answer to your question, I don’t know how much the home visit will cost, it will depend if I am still on Cap/Lap then and if we can tie it in with when they are visiting me already. HatH come and take my bloods the day before Zometa (never have urine tests) and the day before they deliver my next course of Cap/Lab (if the timing is right we can sometimes use the same blood for both purposes). I have been seeing my Onc privately with AXA since shortly after my secondary diagnosis - 3 1/2 yrs ago. He was recommended to me by my boss at the time who was the Head of NHS Cancer Network, and is absolutely brilliant. Being private means I can call my BCN (who happens to be my Onc’s wife) at any time, get evening appointments which means my hubby doesn’t have to take so much time off work and get access to drugs like Lapatinab (much as I disagree with this 2-tier system). My Onc updates my GP by letter and any treatment/scans are done in my Oncs area so I don’t have problems with notes not being up to date etc. One of my recent Ops was done on the NHS because the Surgeon that my Onc recommended doesn’t do private work so I will stay with my Onc privately paid for by AXA hopefully till the bitter end, and dip into the NHS as and when required.
Thanks Linda - I’m pleased that you have managed to meld the two systems together so well. I obviously need to have a chat with my onc and see if we can manage something similar. Access to drugs is a very real issue - I certainly would not have been able to get the Avastin on the NHS, and we had decided to self fund until AXA/PPP agreed at the last minute to pay for it. And I am aware that Zometa is the gold standard and not always funded by the NHS. I imagine I will be on chemo again at some stage and again would hope to get the gold standard - although I feel guilty saying so knowing there are posters here that won’t be able to.
You haven’t rambled at all - thanks so much for replying, it has been really helpful. I seriously do not know what I would do without this forum.