NHs and private - how does it work

Hello again Anna. Your husband is likely to need drugs for a long time and these are very expensive if you are looking at the PARP inhibitors (3+K/month), immunotherapy or something like Lutetium 177 which is a radionuclide therapy which targets the cancer using the binding mechanism to PSA (100+K for the course). Enzalutamide is still under patent so a similar cost to the PARP inhibitors but other second generation antiandrogens are cheaper because they are off patent now, however, you would want the drug most suitable for the cancer. By the sound of it you have access to centres of excellence and a very good oncologist who would probably have access to trials through the NHS. I have no experience of the private to NHS switch in the UK but have heard that some people do encounter difficulties with switching so speak to your oncologist on Tuesday about timing.

We do not live in the UK and have to collect all our drugs which have the price attached, some of which can be eye watering. Even the 3 monthly hormone injection is over 250 Euros. Unless you are a millionaire I think that realistically you will have to switch to the NHS for treatment.

I have had fantastic treatment onNHS, just as good as if I had gone private, triple therapy and scans every 3 months 

Hello Anna

I am really very sorry to hear of your husband's diagnosis and I know just what a body blow that is far too well!!! 

I think you may be in a state of shock right now and casting around desperatley for a means of regaining control in what seems like a very uncontrollable situation? Your mind is racing over all possibilities now and in the future?

So, list the situation (as I understand it)  rationally:

Your problem is that your very youthful husband has been diagnosed with an aggressive form of prostate cancer.

you have an excellent private medical team behind you and have private health insurance with cancer care covered.

The cancer drugs your husband might need will only be covered for 12 months and the costs are mega high.

You have an appointment with your private oncologist on Tuesday.

You ask whether you can switch from private care into the NHS at the end of 12 months and whether the drugs will be offered by the NHS.

For me, the logical step is to make a list of all your questions, including the one about the private to NHS switch on Tuesday and to confirm with your GP.

I would also say that good NHS cancer care is 'out there' and if you do switch, do your homework,ework and go for the best possible consultant/hospital/facilities.

We also had to go through genetic screening because of the high incidence of breast and prostate cancer in my husband's family. This meant I had worries for our children too. Fortunately my husband was negative to the BRCA gene but we have been warned that there are other genes out there that they might not yet know about.

My thoughts are very much with you and your husband and I hope you can tap into the very best of treatment and the very best oof outcomes :)

Thanks Worriedwife I think you’ve hit the nail on the head… I’m panicking and worrying about every eventuality. And you’re right that I just need to ask all of the questions on Tuesday.

One of the main reasons for my concern is that the report we received recommends for the CDK12 a drug which is FDA approved and would (it appears) be covered by our private medical but not yet approved by NICE. So I just hate the idea of him being able to access it privately but not if we transfer to the NHS in 12 months. It’s reassuring to here good things about the NHS cancer care on this forum and I have heard that generally - I think the NHS is great when you’re on a track - but I guess my concern is whether he will have access to all of the drugs he needs. I agree my mind is rushing around and panicking about things in the future though…

In terms of NHS hospitals, I’m a little unclear what options are actually available to us. Is it more than simply our local hospital? It looks like most of the top class London hospitals have catchment areas which is understandable (and we would be outside)

Thanks for taking time to respond xxx

Good Evening Anna (Anna42) 

I think you have had some great advice and positive contributions. The NHS has been there for me when needed and although I have had delays - I have got the treatment I needed.

Yes you have the right to chose in the NHS - this link should help:

Choices in the NHS.

I know you have a meeting and you no doubt have lots of questions to ask - here's our checklist which may help:

Questions to ask my Team.

I hope this helps, if i can do anything else for you please don't hesitate to give me a shout.

Best wishes - Brian.

Hello Anna

The main point is that patient choice is paramount in the NHS. We can choose which hospital we go to for secondary care.

However there are other factors involved in the decision making.

Travel logistics

hospital facilities and the their specialities

waiting list and times

care quality commission ratings

patient experiences and satisfaction 

All nhs hospital trusts have to publish annual reports . They also publish their regular board meeting documents ( including patient safety and care quality data). So, worth digging around for these in potential hospital trusts  web sites! Also, ask around! I’m sure others here can tell you about their own experiences of hospitals wherever you live or want to go!

if NICE have not approved any drug or procedure for any reason your chances of getting it prescribed on the NHS are slim unless you can get in on a trial. ( I think, but may be wrong! )

HTH

but…. While you are both reeling from the shock, why not wait until after Tuesday’s appointment before more googling for info you might not need? Let your emotions and panic subside and not feed them?

( says she who spent hours googling with tears streaming down her face and in a massive panic!!!  But…. The more I read, the more distressed I got!)

take care of yourselves