NHS Care Nurses....conflict with private patients

As a private patient, I was given an NHS Cancer Care nurse to contact. Initially, there was no problem but on contacting her at a later date in order to have a seroma drained following surgery for axillary clearance she was informed that because I was a private patient she couldnt help me. I would be interested to learn if anyone else has run into this problem. I appear not to be allowed to contact a Cancer Care nurse as I am a private patient. This doesnt seem right.

Yes I had the same problem. Initially I saw the NHS BCN as recommended by my (private) consultant but months later when I wanted to see her (can’t remember what for now) was told that I couldn’t see the NHS BCN direct and they would only see me if I was referred to them by my GP. Ditto when I wanted physio to deal with cording - on the NHS I could have arranged it through my BCN, as a private patient I had to go via the GP. How stupid is that?

It seemed to me that it was sheer bloody mindedness on the part of the NHS. They should have been pleased that the bulk of my treatment and care had not been a burden on the NHS!

The other aspect I noticed about being a private patient was that my oncologist didn’t take my case to discuss at a Multi-Disciplinary Team (MDT) meeting as they do in the NHS. When I saw him he was just back off holiday, he kept me waiting while he read my notes, then offered me chemo.

When I asked for a 2nd opinion I saw an NHS onc, who had taken my case notes to the MDT beforehand, and said she wouldn’t have even mentioned chemo.

I was quite cross about the difference in approach, but was glad I’d got the 2nd opinion.

Sarah

I also had problems. Started out NHS but got private health thru work so moved to private treatments. The private hospital told me they could refer me for breast prosthesis to NHS but I would have to pay for it and fitting too … £219. It was cheaper to buy it a specialist shop and have a fitting £140. I have since campaigned government, MPs, NHS, everyone … and this has now changed. If you are having private treatment you can get your GP to refer you to the NHS for a FREE prosthesis. This is in Leeds. Not sure how it works elsewhere.

Hi, I have also had all my treatment privately and therefore have seen a private breast care nurse, this should be the case for all private patients (one of my closest friends is a bcn.)
I also know for a fact that my case was discussed at MDT meetings every step of the way.
I am shocked to hear that everyone does not get this level of care when treated privately…I know it can be a problem if you have some treatment on the NHS and some privately but every breast cancer patient in this country should have access to a bcn

My care is private in Leeds (work insurance policy). I have a private BCN and they have MD mtgs all the time.

Perhaps the problems I encountered were a hangover from the previous government’s policy that if any part of your treatment was paid for privately then you had to pay for everything, even if some parts would otherwise have been covered by NHS? To me it felt like sheer spite and resentment that I had any alternative available to me.

Edit - On the other hand it seemed unfair that my health insurance policy had to pay out large sums of money for “private” rads treatment when I actually had NHS treatment. What a rip off!

I have to pay for my OPD scripts - and they are very expensive - I could use my exemption card if they were NHS scripts.

When I get an MRI scan (for example), I have to go to the local NHS Institute of Cancer. My ins company has to pay the NHS £700 for this and so I guess all the rads are going to be chargeable, too.

Oh, and no NHS wig or voucher, either; not sure if Leeds THT do this.

I’m private (BUPA thru work). Dx via the NHS, op in private hosp, chemo at home, but the MRI and now my rads are at the NHS hosp - but paid for by BUPA. However, the NHS BCN who I met at my dx has kept in touch throughout. I’ve been v lucky with side effects, so haven’t needed her so far.

My onc - who spends most of his time at the NHS hosp, gave me an NHS prescription for a wig. My tamoxifen is via the NHS.

I didn’t get a prescription for a wig and have asked Onc to write to my GP to prescibe Tamoxifen so I get it free … otherwise I’d have to pay for it if he prescribed through private hospital as its not covered under private health.

hi
I have private medical insurance was introduced to BCN at the private hospital, she seems work both NHS and private I never hear from her but to be honest I didn’t find her any help she just gave me leaflets, I have had much more support and help from this forum. I to was refused a wig “voucher”.
T

Wonder if we should all be lobbying someone to change this practice … it doesn’t seem fair that we all don’t get a wig voucher.

Why do people go private then if the care is available on the NHS?

Because I can park for free. I get weekly Chemo and will be getting Herceptin for a year. Free parking will save me a small fortune.

Because I get to see the head honcho Oncy every three weeks.

Because when I get admitted for rotten reactions with Chemo I get a private room, unlimited visiting from family, free wi-fi and fantastic food.

Because I got a Portacath so my veins aren’t wrecked.

Because I get all this free with work.

I am getting all my treatments via the NHS. To be honest, so far, I cannot fault the treatment.

I have a free parking pass for both the hospitals that I have to attend, it has the disabled logo on it so I can park in disabled spots too although I try and avoid that. I too have seen my designated oncologist every three weeks. I have just had a picc line fitted that will save my veins. Only thing I didn’t get was a private room when I was admitted and unlimited visiting from family - but the food wasn’t bad. I wish I had had a private room - would have spared me and my visiting family from having to see the 35 year old woman in the bed next to me ending her fight with cancer on a public ward - now that shouldn’t happen even on the NHS!! I used to arrange to meet my family down in the day room after their first visit.

Good info! I was doing some search and i happen to come across your page. Just thought i should share to you guys the latest news about this topic since we are talking about the same dilemma. While not as widespread in males, it is a healthcare fact that men can get breast cancer. While male breast tissue isn’t quite as complex and customized as female mammary glands, malignant tumors can still grow in the breast and then metastasize in various parts of the male body. That doesn’t make things any simpler for Raymond Johnson, 26. He has breast cancer, and Medicaid has declined protection.

Article Source: S.C. man denied breast cancer coverage by Medicaid

I couldn’t believe that these medic people wouldn’t cover his illness just because he’s a man! He’s got breast cancer for crying out loud! People nowadays can be so sexist. Breast Cancer is a serious issue indeed. I’ve met people with such condition and it’s really hard for them to cope. The important thing is that we should be aware of this, and we should help each other in any way possible. We should all be willing to help, each of us should fight for a cause, men and women alike.

just read all your comments on this! started off diagnosis with my gp but had to wait two weeks for my appointment and as this was a lump on previous lumpectomy couldnt wait that long so opted to go private! my experience has been a mixture of them all! gp will write prescriptions if i ask so i can get free with medical expemption certificate!

like some of you i see the private side of health care as leaving room for someone else to get in earlier as well as the benefits of good food and a single room!

Am with BUPA and was a bit shocked that they didnt cover the cost of a wig! but did cover antisickness drugs! i wrote to their customer service department and to the advertising standards agency when a few days after being told that the wig wasnt covered saw their new advert depicting a lady with no hair playing with a wig! within 10 days their policy had changed! result!

As for the BCN i have not had contact with a private one am being treated at christies! but the nhs one i contacted independantly had been fine in terms of advice! although when i phoned them about a side effect and they couldnt help me they went to the chemo nhs nurses at macclesfield who said they couldnt help me as was private!

just my thoughts t x

I get private medical insurance through work and have been paying for it for thirty years … if I can have the comfort of going private and using it, I will. I’m not sure how much I’ve put in over the years, but after thirty years, I sure as hell deserve a private room!

I have private medical insurance. I don’t use it everytime I need treatment but if I know I am going to be in hospital as an inpatient I use it. The benefit of a private room? Being on my own when I felt under my arm to see if they had done a node clearance or just a biopsy without having to share that moment with a room full of patients and visitors.

I also pay in a way through the P11D tax system every month so it’s not completely free.
I go to NHS wards when I have emergency (pre-BC) admissions and in there I cannot sleep - the lighting is too strong, there are always folk coughing & bringing up phlegm, retching, using bedpans, shouting “nurse” etc. I’m a very, very light sleeper and the only time I sleep in hospital is in my own room.

I can choose which hospital I go to and I even chose my own surgeon - he specialises in reconstructions as well as BC, and I chose my own Oncy. He’s not just “designated”, he is a consultant and a world authority who was one of the doctors who really pushed for Herceptin being made available relatively recently for primary tumours. The registrar who accessed my port on the ward said that my Oncy was the hardest-working, most dedicated chap he knew of. He is the one I want by my side.

It’s all about choices. Thanks to work insurance, I’ve made mine.

Please feel free to shout at me or swear at me or tell me to bog off, but here’s my two penn’orth.

Isn’t this something about making choices, and choices having consequences? Most of us don’t have private medical insurance, it is NHS or nothing. Most people have to go their nearest hospital irrespective of ‘patient choice’ and accept whatever care that hospital is able to offer. I have been very fortunate in that I live 10 mins walk from one of europe’s best specialist cancer hospitals; most people attend district generals doing their very best on tight budgets. My surgery and reconstruction were carried out by people recognised as leaders in the UK (one of whom only does NHS work; the other is internationally recognised) and I always saw a top oncologist; even a private hospital can’t necessarily offer that.

If the motivation for private care is a private room and free parking, then I’m sorry but an NHS wig voucher might just be the price you have to pay. As my mother used to say to me as a child ‘you can’t have your cake and eat it.’

It is does seem odd that the private sector is, seemingly, offering poorer BCN provision than the NHS, although I’ve heard similar complaints from people having other forms of private medicine.

I do appreciate that some people have no option but to have private care becuase they aren’t eligible for the NHS, but I guess the rest of us ‘pays our money [or not] and takes our choice’. Sorry if that seems harsh or unfeeling, just that I have met many people on low incomes who find it hard enough just paying for the essentials of getting through treatment.