i hope its not bad form to ask this question, just looking for advice. i have good private health insurance from my job which i used for my surgery but am weighing up whether to go back to the NHS for the rest of my treatment - i had grade 3 tumour spread to lymph nodes, so will need the whole hog.
the private hospital was great but i felt quite isolated - i didn’t speak to any other patients, would’ve liked some contact with people going thru the same thing but it was quite empty and we were kept very separately. (not that i’m complaining, the treatment was great.)
i’m in (north) london and have heard good things about Barts and UCLH - any veterans out there? the (private) breast nurse warned that if i have treatment on NHS i wouldn’t have as good back-up and support - would end up at A&E if there are complications, whereas with private you’re admitted immediately. is this a valid point?
i know i’m in a luxurious position of being able to choose, sorry to those of you who can’t, just want to make an informed decision. all comments welcome.
I’m not rich, but am lucky enough to have BUPA cover through work. I had mx, recon, chemo and rads.
For me it was great to have chemo privately as I could have chemo at home! I live alone and over an hour a way from the hosp. They came out to me the day before to take bloods, I had the same lovely chemo nurse for each of the poisonings and they also came out the day after to give me a pegfilgrastim (neulasta) jab. Saved hours of time hanging around hospitals and meant I didn’t have to drive when, potentially, feeling rough.
For my onc, the biggest benefit was that he could prescribe both Emend (top qual anti-sickness) and, most importantly, Neulasta (helps keep your cell counts up) from the start.
I did have a 24 hour helpline number to call, but was told that if I felt unwell or had a temp, I should still go to A&E.
I’m another one who had chemo privately at home through my work insurance. I do know what you mean about feeling a little isolated however I had superb care, a dedicated chemo nurse on the end of the phone whenever I needed her. I used my local Helen Rollason cancer charity a lot for support and they also run a breast cancer support group once a month which is really great. I’m really pleased I could go privately, there where no delays in my treatment waiting for chemo each session and I’ve got nothing but praise for them.
Just had a lumpectomy at UCLH yesterday on NHS. So far they have been superb. Since first visit I have had my own breast care nurse who I can phone any time.Today as I left she stressed that if I got any sign at all of probems or infection I should phone her immediately and they would get me in to sort it. After diagnosis there was a three week wait for surgery, I had been told I would be on Letrozole for 5 years and I thought I would like to start it immediately in case it was spreading in those 3 weeks.I phoned my nurse who imediately organised another meeting with one of the doctors to give me a prescription. The ward last night (4 bedded cubicles was too noisy but I think that was just bad luck. In every other way I can’t fault the NHS treatment so far.
It’s a bit of a postcode lottery as to what’s funded in each area, so best to check. In some places (very few) they are given as standard.
In others, if you are really ill with just the ‘standard’ anti-sickness meds, they will give Emend thereafter. Some people still have to fight for it. It’s good, because it doesn’t just stop you from being sick, it also acts to stop you from feeling sick!
The Neulasta is v good - it helps boost white cell production by your bone marrow, helping to prevent neutropenia, infections and delays to treatment. It costs about £700 a time, so v few give it as standard. There are cheaper altenatives, but they involve daily injections for 10 days - some hosp try to save money even more by only giving for 5 0r 7 days! Many hosps only give these after you’ve had a problem.
Dx
judes. Don’t quote me but i’ve heard discussion about emend in here, and i’m sure it’s there on our NHS. Try not to let that sway you, many of us have never needed any of it.
Hi Judes,
I has the Neulasta injection on the NHS. It seemed to be given as a matter of course if you were having Tax (Docatexel) chemo as I had no probs with my bloods and when I asked why I was having it I was told everyone on Tax has it to pre-empt any problems. I think it varies where you are, I was treated in Edinburgh. I could not fault the treatment I have been given (Mastec, 4 x FEC, 4 x Tax, 20 rads, hercep and tamox). Even phoned oncs’ secretary on Fri last week in a panic about a lump in my abdomen, and he saw me on the same day - seems I have had a hernia since gall bladder removal 7 years ago that I’ve never noticed before! I also have a 24hr number to call if I need it.
BPx
I had all my treatment at the Marsden in Chelsea on the NHS. I was very happy with my treatment, no vomiting or nausea and neulasta which I gave to myself 24 hours after each dose of chemo.
If I had had a choice I would still have had chemo in hospital. On two occasions while I was having chemo another patient had a bad reaction- within seconds each time she was surrounded by doctors and nurses who sorted things out. Not trying to scare you but it can happen.
I know it means alot of sitting around in hospital waiting rooms but I either read via my kindle or chatted to others going through the same thing. I went to and from by bus and tube- good exercise and got me out of the house.
All of the small problems I had were quickly sorted and I saw the doctor on 5 of the 6 sessions that I had. I was given copies of all my blood tests and pathology reports.
Just thought you would like some NHS input as well.
D x
I did not need Emend but I know that some of the other NHS patients were given it.
I was NHS and got excellent treatment. Both meds are available on NHS. I got a lot of support from being in the chemo day unit at the hospital. I met some lovely people of all ages, all types of cancer. My daughter came with me for my treatment and she got more than me out of coming to the unit. The older relatives (mainly husbands) immediately started talking to her and made her feel very welcome and special. As we saw mainly the same people at each appointment she started to look forward to going. They always asked her how she was and how she was coping. She learnt a lot about cancer and how to cope as a relative, more than any BCN could ever have done.
hello… when i was diagnosed we also had private medical cover with bupa part of my husbands work package… i told my NHS consultant that i had private health cover and asked what her thoughts were… she said… because of government guidelines. i would be treated just as quickly on the nhs as i would privately… i opted for NHS and had fantastic treatment … but the decision must be yours… angie xx
I do think that it is a postcode lottery as to giving Emmend etc. I live in the South Coast and have been lucky enough to have had all of my treatment privately. I was told by my chemo team, that our local NHS hospital did not give some of the specific drugs that helped make the treatment easier, out.
Going privately assured me of continuity of care, I see the same team for every treatment, More time was given and I only ever saw the Consultants. The hospital that I attend had set up an oncology suite and treated people together,I could have had treatment at home but choose to go in to the hospital. I count myself very lucky to have received the care that I have, although my partner felt that it could have been better at times.
It is your decision alone, however I would add that you are lucky enough to be able to choose and if you did try using the NHS and you felt that you were not receiving the care that you needed you could opt to go privately. It is a shame that you too are treading this path, however you will get through it and am sure that you will make the choice suitable for you.
Good luck.
Michelle x
I was also told by my surgeon to stay nhs but living in the middle of nowhere, 3 kids and a total muck up by the nhs of getting my chemo sorted I have decided to have it at home via my private health care cover. BUT I have been told this means I won’t get my wig voucher, is this right? This doesn’t seem right to me.
Ali
I had my op and scans privately and my chemo and rads on the NHS.
Having the op and scans privately meant that I had them done more quickly so that was better for me psychologically. With the chemo and rads I’m afraid that my reasons for using the NHS were partly financial.
In my area there’s only one hospital for chemo (Bedford) and one for rads (Addenbrookes), so private and NHS treatment are given in the same place, at the same time, by the same staff. However by using the NHS I became eligible for a daily payment from my insurer (AXA PPP) of £100 a day for each day of chemo or rads. I had 6 chemo sessions and 19 rads so they paid me £2,500.
This helped to pay for the petrol, parking and food costs associated with driving for an hour and a quarter each way every day for rads and what was left over went towards a much needed holiday after I’d finished active treatment.
I didn’t need Emend as I was never actually sick, but I did have Neulasta on the NHS four times. I had it for FEC2 (as I had a nasty infection with FEC1), didn’t have it for FEC3 but was almost hospitalised with Neutropaenia so then had it for all 3 TAX chemos.
Money just didn’t seem to be a problem with my NHS treatment and I had everything I needed, when I needed it.
Jane, i am exactly the same as you, funnily enough i am also at Bedford,going to Addenbrookes for Rads and claiming through AXA. Although money is not the main decision maker, like you i have decided to go through NHS for rads as it all goes on at Addenbrookes. Are you through chemo and rads now or have you finished? I have just had first chemo and have two weeks to go before my 2nd. Planning a well deserved little holiday next September courtesy of AXA. Wishing you all well. Ginny
I went through this trying to decide a few months back - not terribly well-off but have very kind big sister who is. When I thought I was going to have to have double Mx with reconstruction I decided that was too much to ask. And then I have a friend who is a head and neck cancer nurse (who had gone privately for some treatment so she wasn’t biased) who did say sticking with the NHS for cancer treatment was advisable. I didn’t have the Mx in the end, just WLE with rads, but to be really honest (and I am an NHS employee) I’d go private if I had the chance again. I’ve been quite disappointed a few times with the NHS, but am sure that’s just my situation. The first private guy I saw said my situation was ‘more complicated than serious’ and I think the complexity makes it difficult for the NHS.
I think with rads you won’t get any advantage, but with anything else you’re likely to get a better service.
Also, meant to say I had 2 ops with hospital stays - one in ward and one in private room, and yes, it was nice to be able to share in the ward with somebody who’d been through the same thing, the night in the private room was heaven compared to the ward. I think I like my comforts too much.
S
I think you’re the first person I’ve come across on here who’s having treatment at Bedford! I had my last chemo (FEC-T) in early May and rads through June. Depending on when you have your rads I can highly recommend taking the pretty route to Addenbrookes through Grantchester. There are several lovely pubs there for the occasional lunch and you just have to stop off at the Orchard every now and then for afternoon tea…
Whereabouts do you live? I’m in Turvey so Northampton hospital is actually nearer but as my GP is in Harrold I went to Bedford. I had my op at Biddenham Manor - AXA PPP have been great throughout. My onc is SS, who is really lovely and always spends as much time with you as you need, and I’ve never once seen a registrar, always S, even when I’ve gone in without an appointment.
Next time you’re in the fantastic Primrose Unit say hi to Maggie for me (the Liverpudlian one) - she lives just round the corner from me but I haven’t seen her for ages!