NHS vs Private ?

User

Posted 21 Mar 2022 at 15:22

Hi,

my husband was diagnosed with prostate cancer last Friday... days after his 60th birthday 😢

He wasn’t happy with the way the appointment went, no consultant, a nurse... and was just given a load of leaflets to read.

He has been given a date of 10th May, to meet the surgeon and to have a “chat” so goodness knows when the op would take place... six months ?

so we’ve been thinking about going private for removal of his prostate.... has any one done this ? How easy is it to go from NHS to Private ? Would you be referred back to NHS for “aftercare” ?

thank you

User

Posted 23 Mar 2022 at 10:10

Exactly as Les says. My surgeon, who is a lead, high volume surgeon, also said it was not worth seeing him privately. Not unless I wanted a carpeted room and possibly a better menu for the one night I would be expected to stay. I have been 100% satisfied with the speed of service and care offered to me by the NHS, but I do realise it could be a postcode lottery.

User

Posted 24 Mar 2022 at 10:28

Hi all. I was diagnosed with a high risk Gleason 9 on 31 January. I too wondered if going private might be a better option but I cannot fault the NHS. I quickly had further CT and Bone scans to ensure no spread, met with the consultant on 10 March and have just been advised my Radical Prostatectomy is on 12 April. Although it is all very scary I am so grateful to everyone I have met at the NHS over the last few months.

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User

Posted 21 Mar 2022 at 15:50

Sorry for the situation you find yourselves in.

The protocol in many hospitals is that the clinical nurse specialists do the breaking of the bad news, because the consultants are not always particularly good at doing so. In practice, there's not a lot of point going in to detail at that meeting - after the word cancer has been mentioned, patients take in only around 18% of the rest of the consultation. What you should be able to do is to ask for another meeting to go through the questions which you've had since. This is also where it can be invaluable to join a local support group where patients who've been though all the local treatments can talk with you about their experiences.

If we knew his diagnosis, we might be able to comment on the significance of any waiting. It gives time for prehab - getting fit for the op (makes a significant benefit for recovery), getting pelvic floor toned up, etc.

In theory, you can select to have parts of the diagnosis and treatment done privately and switch back to the NHS for other things. In practice, the NHS aftercare can be difficult to get plugged back in to.

I also do wonder if you have maybe selected prostatectomy in your mind before talking with the surgeon and before talking with an oncologist? I would try to be open minded at this stage, while you learn about the pros and cons of each path, unless one is completely ruled out for some reason.

User

Posted 22 Mar 2022 at 16:51

Hi,

As Andy says above it's quite normal to be told by a nurse. The specialist nurses can be a very good link to find out more. Did she/he give you a phone number to ring. Sometimes it's a Macmillan Nurse who will act as your guide and tell you what is being offered, what the MDT said and what it means.

May 6th sounds a fairly long time although if his diagnosis is a low grade they will likely say it's a low risk case and prostate cancer is slow growing.

Normally after a nurse gives the verdict you get an interview with a Urologist, although they might or might not be a prostate surgeon as well. Normally they don't try to influence your decision and tell you what the suitable treatments are. That might include just watching it, active surveillance. There is brachytherapy and radiotherapy with hormones as well.

From what I've read some areas are more touchy than others about people using private treatment although when I did it for another type of cancer the consultant gave me aftercare on the NHS. Aftercare can be quite minimal unless more treatment is needed.

I hope that is of some interest,
Regards
Peter

User

Posted 22 Mar 2022 at 17:14

It just goes to show the differences between hospitals my diagnosis was eight years ago. The consultant surgeon gave me the bad news in a straight forward but kind manner. He said he didn't have the time to go through all the possible options, but i would be seen by a urology oncology nurse straight away.

I probably fall in Andy's 18 percent intake club. The nurse was brilliant and eight years on they still are. My wife has family medical insurance through work, so I rang our local private hospital and received a call from my NHS surgeon who suggested that his NHS theatre had better equipment than his private theatre, they both now have the same equipment.

I went to see another consultant listed as one of the Daily Mail top ten urology surgeons. He only did open surgery and it would have meant a sixty mile journey after surgery.

I have had some private post op surgery and finished up in the NHS urology ward the next day.

Thanks Chris

User

Posted 22 Mar 2022 at 21:38

I would agree meet with surgeon & Oncologist before deciding. When I met the surgeon he said the waiting time for op was 6 to 8 weeks. I asked if there was any befit in going private (he also works in private sector) he said other than a private room & better menu there was no benefit and better after care in NHS. I've decided to go for Radiotherapy & although this won't be till September already started on HT. Good look with treatment from experience I'd say most difficult part is deciding on the treatment.

User

Posted 23 Mar 2022 at 10:10

User

Posted 23 Mar 2022 at 11:33

Hello,

We initially got a private consultation for a second opinion, when surgery became an option we decided to go with that surgeon and got an NHS referral. Unfortunately it took forever to get referred and then we were on a waiting list which got to much to bear! So we switched to private again and for us it was the best decision we made. I understand that you still get all the amazing treatment on the NHS and my OH certainly wasn’t bothered about a luxurious private room. What we found was the pre and post care was second to none. The amount of phone calls I/we received from our surgeon to keep me updated when he was in or to see how he was doing before and after he was home was unbelievable and the confidence and assurance that we felt just made everything go really smoothly.
We’ve had a couple of follow up consultations but now we will just have PSA tests done at the gp surgery and send the results to our consultant. If/when further treatment is needed we will be able to get that through NHS. I know it’s not the same for everyone but just wanted to share our own experience. Best of luck in whatever you decide

User

Posted 23 Mar 2022 at 15:48

Hi..we are similar to Elaine 4878 in that we made an appointment for a private consultation after my hubby got told his diagnosis in November by a consultant urologist but given minimal information and just handed leaflets to make a decision from. My husband is high risk Gleason9 T2. He has opted for Radical Prostatectomy and the private consultation was with the same surgeon we would have if going with NHS. We have chosen to self pay and his op is 12April. We were concerned about backlog and waiting times. It turns out we recently received a letter from our NHS trust to say the consultant surgeon would ring on May 20 to discuss the Radical Prostatectomy ( if we were still waiting on the NHS)...our assumption is that he would call then and put husband on a list so to us now,as our son has said,it's a no brainer.... There are a lot of amazing people on this forum and no one would tell you what you should do. Get as much information as you can and make the decision then move with it....it really is one step at a time. Good luck

User

Posted 24 Mar 2022 at 10:28

User

Posted 24 Mar 2022 at 12:05

Wow.Barry that is great news that you are having your RP the same day as my husband and so soon after diagnosis. We are in no way critical of the NHS but at Gleason 9 and asking the question of the consultant,"how long a wait?",the reply was "could be up to 6 months depending on who walks through the door". At Gleason 9 and Grade 5 we did wonder who was likely to "walk through the door" and so we decided to pay for the op. Sounds like it is possibly the postcode lottery dictating hi w quickly you can have the op on the NHS. Best of luck on April 12th

User

Posted 24 Mar 2022 at 13:36

Thank you

Yes before the consultancy I was worried I would be told there was a waiting list so can fully understand your decision to go private. It was a relief to get a date but the days are now going so slowly. However the advice and the positive stories I have read are helping me deal with the challenging weeks ahead.

Good luck and all the best wishes to you and your husband

User

Posted 24 Mar 2022 at 16:59

Thanks so much

User

Posted 24 Mar 2022 at 22:52

Bear in mind that your cancer will have been there for years - perhaps decades. A delay of a few months for treatment is extremely unlikely to have any impact on the outcome. These days if you opt for surgery and there's likely to be a delay, you'll probably be prescribed bicalutimide - a hormone therapy drug - which will stop the cancer in its tracks. Personally I'd consider private treatment to be a complete waste of money.

Cheers,

Chris

User

Posted 25 Mar 2022 at 14:20

I suppose it's a matter of choice....2 years ago my husband's PSA was very low and at dre, the GP said he must be doing something right as it felt like the prostate of a 25 year old. Move on two years and Gleason 9 grade 5,so slow growing or not,something has happened in those two years. As with most people,we would prefer not having to dip into savings but the private option is out there and we have chosen to go with it and hope someone will take our place in the NHS list.

User

Posted 28 May 2022 at 22:48

I went private for the operation, mainly because I didn't want to wait and I wanted to ensure that it was the actual consultant surgeon carrying out all of the treatment and not part supervising a trainee, which was true for both my sisters who had surgery for breast cancer at the same hospital. In fact one of my friends only met his surgeon on the day of the prostate operation, which was a bit unnerving for him. It was a last minute swap, but think he was happy enough in the end.

It does seem true the care or continuity of care is better when you stick to one path, whether that is fully NHS or fully private. Going private for the operation has caused me some minor issues trying to slot back in to the nhs. The original hospital discharged me because I didn't have the surgery with one of their surgeons and the hospital where the surgeon that did my op has a long waiting list. My operation was last Oct and my first telephone consult will be in late August this year to be accepted as a patient. I do not have access to a specialist nurse to contact during times when I had on-going symptoms and had to rely on my GP for help. Although I appreciate their assistance, I feel they are out of their depth. They even had to ask me what my PSA should be post prostatectomy and at what level I should be concerned.

Off course if you have enough money to continue privately or have medical insurance then this wouldn't be an issue. I guess if I'd stuck with the same hospital that received the 2 weeks cancer referral to carry out the op privately then things would be much easier as I am already in their system.

User

Posted 29 May 2022 at 01:17

Our experience was similar to Peanut's. We went private to get the surgeon we wanted - he was already the urologist for my dad (private), my father-in-law and my mother-in-law (both NHS) so it made sense to keep it in the family. We self-funded and I think it cost around £20k in total, 12 years ago! Slitting into NHS aftercare was a problem though; John has never had access to a CNS and we had a real fight to get a referral to the ED service, GP initially would not take on the routine PSA tests so we had to keep paying at whatever the ongoing rate was. It all got sorted eventually but it took time.

There was a member on here a few years ago who went private because his hospital didn't do Da Vinci. He met the surgeon on the day of the op and never saw him again - never even had his post-op review appointment. He was left with severe incontinence but his local hospital urology department said he wasn't their responsibility because he had gone elsewhere and the private surgeon wouldn't see him.

For some people, going private is exactly the right thing and we have benefited from knowing that J will always see the consultant (who knows our family well now!) and doesn't have to sit in an overcrowded clinic for 3 hours to see someone he has never met before. I suppose the important thing is to check beforehand what your local NHS position is on your aftercare.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 May 2022 at 07:08

Miss Poppy, reading this threat it is a post code lottery

my OH saw the surgeon in March, the oncologist beginning of April, had a referral for Brachytherapy from that oncologist and spoke to the Brachy oncologist at the other hospital just after Easter (that gentleman rung OH) . OH then decided to go for RP at the end of April and had his surgery 19th May. All on the NHS

Regarding seeing the Nurse instead of the urologist - we saw the urologist for a short meeting and then got handed leaflets and told to decide which treatment.

User

Posted 29 May 2022 at 08:19

I had my op NHS last November at the Lister in Stevenage. Time span through initial consultation, MRI, TP biopsy, discussions with surgeon and oncologist (for the RT option) and op itself was less than 4 months. Lead surgeon also guaranteed he would perform my op because of a previous TURP. He also conducts my follow up consultations. Brilliant. Perhaps I was lucky in the postcode lottery.

Edited by member 29 May 2022 at 09:09 | Reason: Amend incorrect timeline.

User

Posted 29 May 2022 at 11:57

I have just had RP yesterday and now recovering in hospital picked up during a health check (private) through PSA test in Dec 2021. First consultant checked and said I did have a lump and had MRI which confirmed this. He had to refer me to a colleague as he did not do Biopsy’s, this was conducted privately at the local NHS hospital. Two weeks later confirmed cancer but then sent me for a bone scan (NHS) and CT scan (private) then took 3.5 weeks to be told it had not spread as he was on holiday for 2 weeks. When I saw him he told me he did not do the RP and he would have to refer me. 3 weeks later saw third consultant who told me he would try and fit me in the following Friday (privately at NHS hospital) but he was then going on holiday for 2 weeks. What a saga but in fairness to the last consultant he came in on his first day of his holiday and carried out the op. Not convinced either way quicker as just depends on luck. I will see the consultant who carried out the op when he is back from his holiday

User

Posted 29 May 2022 at 15:48

The Covid pandemic has disproportionately affected some hospitals providing cancer services, adding to delays that were already longer than in others. For many years delays have been caused largely because of lack of clinicians, particularly in certain disciplines. This has led a number of people to 'go private', in order to have earlier diagnosis and treatment or perhaps in a few cases to be attended to by a specific Consultant. With very few exceptions, the NHS diagnosis and treatment is as good and in some cases better than can be found privately in the UK, the same surgeons often working for both and using shared treatment facilities for example. It's up to the individual to decide whether being seen earlier and sometimes experiencing slightly better surroundings and reception is worth paying for.

As regards having treatment both within and without the NHS, I started my treatment within it at the Royal Marsden with HT but decided to go to Germany because they offered participation in a trial with a more advanced RT treatment combination. The Royal Marsden subsequently took me back under their aegis as an NHS patient and monitored my progress until a few years later they found my slowly but persistently rising PSA was due to new tumour in my Prostate. They then referred me to UCLH for HIFU within a trial and I have remained with them as a NHS patient since, having a repeat HIFU last December. So I experienced no problem reverting to NHS, but am aware transition has not been so easy for some and it's probably a good idea to establish whether this would be the case before going private.

Edited by member 29 May 2022 at 15:50 | Reason: spelling

Barry

User

Posted 31 Jul 2022 at 18:17

It is a postcode lottery indeed BUT I live in a area with a large teaching hospital on my doorstep. Going private for prostate cancer is very expensive and there is a lack.of aftercare that may or may not be taken up by the NHS .I could not have had better or more timely treatment from the NHS than if I had been a private patient I have wonderful designated oncology nurses who all go the extra mile to ensure I am looked after and any problems are sorted immediately .I've just had COVID and my nurse arranged delivary of the anti viral Paxlovid the very next day after we reported my positive test to her .I thus recovered very quickly and am fine .My consultant prescribed the VERY expensive (£36000 a year ) anti Androgen Enzalutimide as first line treatment after removal of my prostate via the da Vinci system failed to solve the problem some lymph nodes were affected and my PSA remained high .After four weeks on ADT and Enzalutimide my PSA was undetectable and that is where it has remained for two years .I also had RT all provided by the NHS and three monthly chats with one of the nurses or my consultant to keep an eye on me .My wife has just had a cateract operation done privately it cost £4000 she wanted the best lense because the NHS only provide distance lenses and the best surgeon he is a teaching Professor and the result has been wonderful for her. But for something like prostate cancer where something like between 30 and 50 percent of men will need further salvage treatment later then the NHS is better for continuity and ongoing care .Choosing your NHS hospital carefully is recommended as not everyone lives in an area where there are centres of excellence .I was seen very quickly when my PSA started to rise and had the operation 5 weeks after agreeing it should be removed .As people have already said the only real difference between private and NHS if you chose your NHS hospital carefully is a room to yourself and a better menu .The outcomes for prostate cancer are very variable and this is the same case whether you are a private or NHS patient .

User

Posted 01 Aug 2022 at 11:01

Originally Posted by: Online Community Member

As people have already said the only real difference between private and NHS if you chose your NHS hospital carefully is a room to yourself and a better menu .

If we're talking about robotic surgery, I'm afraid that even that probably won't be true! I had my nephrectomy operation (kidney cancer) privately - work medical insurance - and the private hospital (like most) did not have a Da Vinci robot. Had my surgery in the local big NHS hospital (which did had a robot) where it was performed on a Saturday by the consultant urologist I was seeing privately, who was also the head of urology at the hospital. Like many NHS hospitals, it makes extra money by renting out the use of its operating theatres at the weekend to private patients. It doesn't have private rooms, so I was on an NHS urology ward, eating NHS food (which was absolutely fine). The only thing I got which an NHS patient probably wouldn't have was a visit from the consultant on the Sunday to see how I was doing. Other than that, my surgical treatment was exactly the same as an NHS patient.

Cheers,

Chris

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