I was originally treated on the NHS for primary cancer, then switched to private for some treatments, but am totally on private since secondaries diagnosis.
I found that on the NHS I was offered lots of support by breast care nurses, drop in centres, complemary therapies, offers of counselling etc but since going totally private - NOTHING apart from my appointments with my consultant. Has anyone else found this?
I am feeling a distinct lack of support - apart from this website of course!
My initial tests and dx, along with surgery was all done private, my oncology and rads were done on the NHS - this was on the recommendation of my consultant who said that the NHS would offer a bigger and better MDT and access to support from BCN etc. I agree that the private sector is lacking in the support side of things.
You should still be able to have contact with your BCN tho. Hope you manage to get some support.
I agree. I was treated privately for primary diagnosis, and pretty much left to my own devices-although if I’d pushed for support, I’m sure there would have been something available.
Since the diagnosis of mets, the situation is slightly different. We’ve moved house and so hospital, so am being seen by a whole new team. Although nominally a private patient, the local hospital doesn’t administer the treatments. Nor does it have scanning facilities. So all treatment and testing is done in the local NHS hospital, and consultations at the private! Simultaneously seeing both sides of the coin, I have to say that in terms of support, NHS is far superior. Perhaps the old saying, “use NHS for the major problems, private for non urgent conditions”, is really rather true.
Private for primary treatment[no mets as far as I know]I had bcn and free wig and all support services!
I strongly agree with everything that all of you have said. I have had all my treatment privately as my husband has private health care through his work. I feel sure that initially this was good as from when I saw my GP to tell him I had found a lump to when I saw my consultant was one working day and 48 hours later I had a mamogram, ultrasound and biopsies with a definite diagnosis. The following week I started chemotherapy and feel sure that the NHS would not have acted so quickly.
I had no contact with any other patients whilst having my chemotherapy and only saw a breast care nurse for the first time 6 months after my diagnosis whilst in hospital after having a mastectomy and lymph node clearance. Having said all that I was able to phone my oncolgist when I felt I had a problem with my treatment and I am in regular contact with my PS via e mail.
I recently asked my PS if I could meet any of his patients who were post surgery after having the reconstruction I am interested in having. The lady I was put in touch with is also a private patient and said exactly the same thing, that private healthcare is good from a treatment view point but the support from an emotional view point is sadly lacking.
Interesting question -
On my PPP policy I had my primary treatment - I was offered counselling that was actually very effective 6 sessions with someone who was really capable and 4 free complementary sessions that were great. I also had access to a BCN who I found fussy and annoying so I used to duck.
For my secondary treatment using my PPP - no counselling (!!) no referral to a psychologist - nothing (!) I did have two free reflexology sessions. Its a small place, its absolutely spotless and there are no delays, its in an incredibly convenient location - so I have tried to supplement this elsewhere through the hospice etc. I do find it amazing that you can diagnosis someone with a terminal disease and then just send them out into the street. Other people have had this experience though on the NHS…maybe its just that support is geared up to primary patients ? We are a bit of an embarassment and expected to keep quiet?
Cathy
I have private med insurance and since incurable regional diagnosis I have had access to a local cancer centre where I have had free counselling (of mundane quality…so I see someone else who I pay for…but the free one meant well) and aromatherapy. Also have access to local hospice nurses (like Macmillan but NHS in my area) who are brilliant and my GP surgery are excellent too.
I also have acccess to local BCN for lymphoedema but she’s one of those “We has ways of making you cry’” kind of people.
I think standard of support care varies greatly from area to areal
The private hospital in our area also doesn’t give breast cancer patients any information on what may be out there for support etc.
Our NHS hospital gives an information pack to all new primary patients with a wealth of information in it so that you can access it when the time is right for you.
I’ve just come in contact with a woman who is being treated privately and she wasn’t even aware of our support group.
Then you come to the issue of secondaries! I feel that we’re in the same bracket as private patients - given no information from the hospital except relating to the chemo or whatever treatments you may have but nothing about the other things such as who to contact for financial/benefit advice, talking about issues that are difficult to face, etc. etc.
There again, in some areas the service is good, and probably even more so for those very few who have a specialist nurse (or someone who can pass that information on).
Has any research been published re the course of breast cancer in the UK from diagnosis to death, for the private sector compared witj the NHS, I wonder? To put it another way, does being treated under the NHS - with longer timescale from diagnosis to start of treatment - significantly reduce the survival statistics for those with secondary bc for whom private treatment is not an option?
Hi Mrs B,
I have always understood that it makes little difference at what stage you begin treatment for secondaries. Length of survival is similar. You can treat a small tumour until it progresses and then move on to the next treatment option and so on until you come to the stage that you may still have relatively small tumour load but have gone through all the treatment options, or treat more extensive tumours which perhaps were discovered on later diagnosis until options are used, and two such cases could still end at a similar point. (Took me a long time to understand that argument but during many sleepless nights it began to make sense.) So I doubt that there would be significant differences between those treated on the NHS and those treated privately.
Jenny
Thanks Jenny - I think I hijacked this thread a bit, so I appreciate your response. Many people seem to worry about a long delay between diagnosis and the start of treatment. Mine was 6 weeks (or 9 weeks from my routine NHS mammogram) while they (Marsden) checked me thoroughly, extra scans to find whether my liver hotspot was cancerous (it wasn’t). I haven’t been greatly worried by the time interval but I assume this is an important reason why people opt for private treatment.
Lindsey.
I had private treatment for my BC, but initial mammo and ultrasound and biopsy all on the NHS. I was given a Breast Care Nurse, huge info pack etc all on private treatment. The absolute bonus for me was a private room ( & bathroom!) in hospital and NO waiting at appt times to see surgeon and onc. The onc spent over an hour with me explaining pros and cons of chemo and radiotherapy, gave me all my medical records to read inc dx, and said to email him at any time with problems or questions. I suppose, as with all aspects of BC, there is no standard of treatments - it still is a lottery not just where you live but even from hospital to hospital in the same area. All these doctors - especially the oncs - just “do their own thing” and it’s the luck of the draw as to whom you get!
I had private treatment. It did involve far less support but i was able to have a chemo not yet available in NHS so i felt i had no option.
I agree that speed and direct access to the specialists is a huge bonus. Whether at the original diagnosis, or at present with mets, I have email/mobile numbers which I can use over and above standard routes. So far, I haven’t needed to use them, although came close to doing so several weeks ago. I think this is a huge comfort, and although I would be reluctant to do so, wouldn’t hesitate if necessary.
Whilst overall, the comfort and privacy is generally better in the private sector, I have had issues there-when being admitted for a prophylactic hysterectomy (I’m BRCA2). several years ago, I had to ask for another room, as the smell from the drains in the bathroom was disgusting.But, as I’m a very private person by nature, the comfort of having my own room and facilities was very important to me.
However the problems with the private sector may continue, as they’re saying that they will only fund one year’s treatment with one of the drugs. So ultimately I may end up simply swapping over to NHS-at the moment, all that is done privately is consultations. Even the maintenance of my Hickman Line and routine bloods are done by my g.p. , so I feel that I’m using very little of the scant resources available locally for my present situation.
I think the support you get on the NHS depends on the area. I was going to go privately for bc but advised to have treatment on NHS. I cannot fault the treatment I am receiving. But the support is another thing. I bought a wig from NHS for £57 which I never liked. Subseqeuntly and only just recently after lots of research found a wig I liked on the internet from a site called Simply Wigs. I can highly recommend. The bc nurses seem very busy. There are no complementary therapies available. Or counselling that I have found in 9 months. Also I have no contact from GP. Have others? And only once when he tried to admit me to hospital. As far as he was concerned I was their responsibility. Also I got my own prothesis from Nicola Jane. Again I tried several before I found one I really liked. From others I have heard there is little choice over this on the NHS. You are given one and told thats it. Having said that I do attend an excellent support group but again this was found for me by a friend when I was first diagnosed with bc. She found lots of information for me which again I was never given on the NHS.
Hi
I have had all my treatment in the private sector and totally agree about the lack of emotional supprot. On each occasion when I have been given devastating news i have just been sent out from the appointment and left to get on with it. Last time I had my chemo nurse who hugged me and let me cry but that was in a corridor with other people around. I have sought counselling myself from our local cancer centre who also do complementary treatments and I have had a kind letter from my GP asking if I need any input from them so I am now to see a Macmillan nurse.
On the plus side I am having treatment that I would be unlikely to get on the NHS and am always seen quickly and if I have queries can phone my oncologist or chemo nurse.
The treatment options are what keeps me hanging in with BUPA !
Kathryn
If private patients have access to new treatments that aren’t available on the NHS even as clinical trials, surely this would make a difference to the survival statistics?
Certainly I was given taxotere privately before it was available for node neg primary bc on NHS.It is now prescribed for those who,like me,are triple negative.I also got Neulasta.We will see about survival!
For the initial cancer treatment I felt incredibly isolated-my onc used to administer the treatment, and so my only point of contact was with him. He was great and we got on well, but I would arrive, be shown to my room, and wait-sometimes for minutes, sometimes for hours-without seeing anyone else, other than a nurse who checked my bp. He did ask initially if I wanted to meet anyone who had been in the same position, which I declined. But there was no designated bc/chemo nurse-and as a friend (who is a health visitor) said to me:“the consultants are great at thinking out of the box, but for down to earth support and advise, you can’t beat a nurse with specialised training”.
I have had all my treatment in the private sector and I can’t fault it. I had excellent support from a breast cancer nurse. She attended all my appointments with me, visited me before and after surgery and was there for every chemo. Soon after my treatment finished she asked me and some of the other ladies to set up a support group. We meet regularly and support patients going through treatment.
I was also offered complimentary therapies at my private hospital. It sounds like I have been lucky.