Chris, do you know anyone in your area who is being treated on the NHS for PCa? If so, worth asking about the quality / availability of after-care before you decide.
John's consultations (after diagnosis - not during) were private and he had the RP privately. When it recurred, all consultations with urologist and oncologist were private and the oncologist did the RT on the NHS. We continue to see the onco for reviews privately. However, we were / are self-funding and it has been very expensive. Each PSA test was £75, every other blood test similar, getting the results analysed is a separate cost, we have invoices for canulas, dressings, catheter bags, catheter taps, the cups of tea I had while visiting, every single thing. But it has been worth every penny to get the 'family' uro and oncologist both of whom we know well because of all the other cancers in the family.
The downsides:
- no access to the clinical nurse specialist who only supports NHS patients
- no district nurse (doesn't happen everywhere but I note that quite a lot of men on here do get a home visit from the district nursing team once they return home)
- we had a real battle to get a referral to the ED clinic (usually only available in our area to men treated on the NHS)
- we had a real battle to get the GP to prescribe meds that the uro recommended (they come out of the GP budget rather than the surgeon's pocket)
- if he had needed incontinence services, the NHS service would not have been available to him.
Others have had the opposite experience - their local NHS services have all been available regardless of whether they paid for their treatment.
One further example - we have a member on here who lives in a different area but chose private RP in Leeds. Once discharged from hospital, he has never seen his surgeon again, he has never formally been given his pathology or had a post-op check up, his GP was very reluctant to even do PSA tests, he has been refused local NHS ED services because he had his treatment 'out of area' and has had no help at all. I think some members in Wales have had similar experiences due to choosing to have their treatment in England.
So while it seems sensible to me to stick with private care while it is available to you, do ask what the local situation is for the kinds of services that might not be provided by your health provider.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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My feeling is that the actual treatment you get in the NHS is on a par with what you would get privately. This is not surprising because it is mostly (for surgery at least) the same surgeons who treat you whether within the NHS or privately. The biggest difference for many is that you get apointments, scans and results plus the treament much quicker in most cases as a private patient.
From being referred by the Marsden for HIFU at UCLH it took seven months before my salvage treatment was done in July 2015 within a study, notwithstanding the fact that I had pushed for it several times in the interim. More recentl with a rising PSA other hospitals recommended I had a PSMA scan but this was declined by UCLH (although they asked me to give them the result if I had it done privarely which I have done.) They just wanted to palm me off with HT. With the support of the Royal Marsden, I subsequently asked whether UCLH would treat again with HIFU the small amount of cancer the PSMA scan showed only witin my Prostate. It's been over three 3 weeks since I wrote but have not received an acknowledgement of my letter and the scans I sent them, yet alone a reply, so I chased today. In my experience of UCLH at least, you have to keep on chasing. Previously, I had to involve PALS after two letters and many weeks went by without response. I doubt very much they will offer repeat HIFU in my case even though the top man is on record as saying HIFU is readily repeatable. But if they won't repeat it, surely they should tell me promptly so I can decide if I will have it done privately elsewhere?
My case illustrates both the delays that can apply for NHS patients and limited treatment options which somtimes apply for NHS patients.
In summary, a majority of men will probably be happy or reasonably so with the treatment they have and the timeframes, which can vary due to post code lottery. For some wanting quicker tests, results and treatment, possibly of a different kind, going private as and when can have benefits (at a financial price).
Edited by member 19 Jun 2018 at 19:18
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Barry |
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Thanks, everyone. Not an entirely straightforward decision to make, it seems (are they ever?). On the one hand there are the support services that are a part and parcel of NHS treatment, while on the other there's the potential extra flexibility of being a private patient.
I think I need to wait until all my diagnostic tests are complete and I have a clear picture of what my cancer staging is and what the treatment options are before making a decision. That's probably going to take at least another six weeks or so, so I don't need to rush into a decision.
Chris
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I had a small post RARP urology procedure done privately, went into my private room lunch time Friday came out about 9.00 pm and was admitted to the NHS urology ward suffering with retention at lunch time Saturday. Helps if your consultant works in both sectors.
Thanks Chris
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It wasn't a simple straight forward choice, but I chose private for my radiotherapy treatment.
I believe the NHS are fantastic, and for my 37 fractions of radiotherapy, my private treatment was pretty much identical to NHS as it was performed by NHS radiographers on NHS treatment machines, with no queue jumping and subject to occasional delays just like any NHS patient.
my private treatment was/is funded through work sponsored private health insurance - I am not self funding & if I was then I'm pretty sure I would have followed & been happy with the NHS path.
the factors that prompted me to choose private were :-
+ve . . I had some insight, and following strong recommendations I got to choose exactly which Oncologist I wanted.
+ve . . I had regular consultations with my Oncologist (weekly) throughout treatment, and always saw him personally, and not a stand in registrar or anybody else.
+ve . . I have immediate telephone support, and can request extra consultations as I desire.
+ve . . I have 3 monthly routine PSA blood test, and by personal request I often have other additional blood test e.g. Liver Function & Full blood count for my own reassurance.
-ve . . I don't have direct access to a specialist Cancer nurse.
-ve . . My policy has £50k per year ceiling, and I got pretty close to reaching it ! & aftercare consultations only covered for 5 year after last active treatment.
one significant factor for me was that private health provider paid NHS to deliver the radiotherapy (a significant part of my treatment @ approx £40k), and i figured insurance company had their premiums for several years, so they can take the claim, meaning its £40k the NHS get in payment for delivering a service & £40k the NHS don't need to spend treating me as an NHS patient, so the NHS are better off & somebody somewhere might get to see the benefit.
if you do choose private path, I believe you can revert back to NHS care if your circumstances did change,
regards
Graham 00
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I think that is a really important point Graham. The private oncology suite at St James' is actually owned by the hospital trust and the profit goes back into the hospital and helps fund the trials they are involved in - that certainly makes me feel better about paying to see the consultant, etc.
I recently had to have a small operation and because the waiting list was long, they wrote to tell me I would be having it at the nearby private hospital instead. When I saw the consultant I told him that I didn't feel comfortable with the arrangement; he told me that in those situations there is a different price structure and the private hospital charges the NHS only what it would have cost the NHS to do the work themselves. So there are apparently 3 price structures for private healthcare - what they charge the NHS, what they charge a self-funder and what they charge an insurer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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When I was first diagnosed my onco said that apart from free coffee, carpet on the floor, being seen on time and having 15 minutes each time there was little difference as I would have seen him via the nhs too.
he did say that th profit that th ehospital made on private treatment went to fund the shortfall from the nhs and more research so I went private. The next bit is not your issue today but when a year later I needed a change In meds my company health insurance would only pay for ”life extending drugs”in my case abiraterone for 12 months so I went back to the nhs and have so far been on them for 28 months.
so I guess I am saying for me I felt good about maybe helping the hospital on day one but also read your policy wording carefully as some do as mine do and others will pay forever so speak to the insurer before starting any treatment or changing any. Mine were up front about the 12 months when I called.
hopefully what you need will be simple and short so much of what I and others have said may not bother you.
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Originally Posted by: Online Community MemberIt wasn't a simple straight forward choice, but I chose private for my radiotherapy treatment.
I believe the NHS are fantastic, and for my 37 fractions of radiotherapy, my private treatment was pretty much identical to NHS as it was performed by NHS radiographers on NHS treatment machines, with no queue jumping and subject to occasional delays just like any NHS patient.
my private treatment was/is funded through work sponsored private health insurance - I am not self funding & if I was then I'm pretty sure I would have followed & been happy with the NHS path.
the factors that prompted me to choose private were :-
+ve . . I had some insight, and following strong recommendations I got to choose exactly which Oncologist I wanted.
+ve . . I had regular consultations with my Oncologist (weekly) throughout treatment, and always saw him personally, and not a stand in registrar or anybody else.
+ve . . I have immediate telephone support, and can request extra consultations as I desire.
+ve . . I have 3 monthly routine PSA blood test, and by personal request I often have other additional blood test e.g. Liver Function & Full blood count for my own reassurance.
-ve . . I don't have direct access to a specialist Cancer nurse.
-ve . . My policy has £50k per year ceiling, and I got pretty close to reaching it ! & aftercare consultations only covered for 5 year after last active treatment.
one significant factor for me was that private health provider paid NHS to deliver the radiotherapy (a significant part of my treatment @ approx £40k), and i figured insurance company had their premiums for several years, so they can take the claim, meaning its £40k the NHS get in payment for delivering a service & £40k the NHS don't need to spend treating me as an NHS patient, so the NHS are better off & somebody somewhere might get to see the benefit.
if you do choose private path, I believe you can revert back to NHS care if your circumstances did change,
regards
Graham 00
a couple of additional points :-
I had initial MRI & Biopsy in one NHS health authority (York), who didn't have facilities to deliver my treatment plan (radiotherapy), so they transferred my care to Leeds NHS, who would have delivered my radiotherapy as NHS, and who still did deliver radiotherapy as a private patient, but if I had remained NHS, after completing radiotherapy all aftercare & follow up consultations would have reverted back to York.
My chosen Oncologist does both NHS & Private work in both York & Leeds, but St James' hospital Leeds is significantly easier to access by car than York, and I liked the idea, convenience & completeness of having of everything in one place.
You do need to consider the long term path, if moving between NHS & Private, or if crossing NHS health authority boundaries.
Although my Oncologist happily referred me to the Leeds ED clinic, I did experience some (but not insurmountable) obstacles because I was from "out of area", and the ED clinic could only give me recommendations that I could take back to my GP.
My GP however has been great prescribing any recommended medication, including both a Pump & Cialis without question, although due the lack of libido, caused by total suppression of Testosterone, these aids haven't been very successful.
regards
Graham 00