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New patient - What process

User
Posted 01 Dec 2019 at 05:47

Thanks to Old Barry, I am starting this new thread

Background:

Hi, I'm not sure if this is the right forum , if not can you please advise.

I live outside the UK but will be moving there (near Loughborough) in January 2020 so that my sweetheart can be with her frail Mother. I started Hormone Therapy 4 months ago, 2 injections so far. I am a UK citizen.

I believe I must register with a GP to get the National Health Number. Once this happens would the GP be the person who manages my hormone treatment ?

Regards Robert

Andy62

No, it will be managed by an oncologist, for which you will need your GP to refer you to a hospital.

The oncologist will delegate the actual repeat prescriptions, injections, etc to the GP, and often the PSA testing too, but the oncologist remains responsible for the treatment.

Old Barry

You have not provided any detail under you Bio so we don't know your diagnosis and whether the HT you are having is a follow up treatment for more advanced cancer or if it is a preliminary to having RT. Assuming you have had tests and scans along with a diagnosis, it would be sensible if you were able to fully appraise your new UK GP so it would be helpful for the GP to pass details on when making your referral.
I would suggest that you start your own thread as a courtesy to the originator of this one which would be better for all concerned.

Barry

User
Posted 01 Dec 2019 at 14:24

As far as I know, 3-4 weeks is typical, but best to ask your mum.

I sometimes need to see my GP after a hospital appointment. Since I often know about hospital appointments that far in advance, I book a GP appointment speculatively a day later. If I don't need it and cancel it, I see the slot has been booked by someone else within minutes, no doubt pleased to book a slot the next day.

The surgery keep back some slots only for booking on the day, for emergencies.

User
Posted 01 Dec 2019 at 15:08

If it’s related to my cancer, my GP will either see me or phone that day.

if I really want to see a GP, I can go to any of the walk-in centres nearby, of which there are three within 15 minutes’ drive.

The system isn’t perfect, but it’s pretty good.

I live near Maidenhead, but my family live in Belfast.  Supposedly the same NHS, but until my health needs have stabilised, there’s no way I’m going back home.  My family, some of whom have had cancer, are amazed at the treatment I’ve received in England.

Ulsterman

User
Posted 02 Dec 2019 at 03:13
Not an area I am familiar with but if I was living in your intended area, I would opt for the very major Queen Elizabeth Hospital Birmingham if my GP was able to refer me there with Nottingham University Hospital as my next choice. Other forum members may be able to comment more knowledgeably on Leicester and Nottingham.

Where I am in North Devon there is not a major cancer hospital, so while I would have to travel quite a distance anyway, I continue with UCLH in London which is 200+ miles away. It does mean that I have to present for scans or certain treatment as appropriate but normal check ups are done over the telephone by appointment. PSA checks are done at my local surgery and HT injections could be given there also if wanted.

Barry
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User
Posted 01 Dec 2019 at 09:32

I think you need to look into what NHS services you’ll be entitled to once you return to the UK.  I think it’s based on residency and not on nationality.

Ulsterman

User
Posted 01 Dec 2019 at 09:39

Just found this - so long as you are moving back to settle here, it seems you’ll be fully entitled to NHS services, but you need to fill out a form GMS1 and provide evidence you’re settling here.

https://www.gov.uk/guidance/using-the-nhs-when-you-return-to-live-in-the-uk

Ulsterman

 

User
Posted 01 Dec 2019 at 10:30

Thanks Ulsterman. The link is particularly useful.

My friends here are concerned that the NHS is about to fail and that I will not be given timeous treatment.

I gather from this forum that there is no indication that the treatment is poor just perhaps some logistic issues.

Regards Robert  

User
Posted 01 Dec 2019 at 10:58

My NHS treatment has been excellent and I’m not worried about its ability to cope in the future.  Of course, it could be better, but I have been well looked after 

User
Posted 01 Dec 2019 at 11:58

Hi Ulsterman, you have put my mind at ease. I was concerned that supporting my sweetheart might put my health at risk because of questionable treatment.

Thanks again, let's enjoy our lives on our journey :-)

Regards Robert 

User
Posted 01 Dec 2019 at 12:14

My NHS treatment has been superb - no complaints. The frills around the side have all worked nicely too - Macmillan nurses, holistic needs analysis (HNA), ED clinics, etc. My GP is also superb. Both my GP and my consultant have allowed me to take control of my treatment, but that's because I put in the effort to become an expert patient, something of which they fully supported (although not all consultants/GPs do).

I am worried for the future though.

I counsel men with PCa, and I'm aware not everyone gets such good treatment. Learning about your disease does seem to help considerably, but postcode lottery comes in to it too. Some people never even get to see their consultant other than whilst anesthetised.

I've counseled a few men who've gone privately, and that can go very wrong. My GP stopped me going privately when he first referred me - I didn't understand why at the time, but I do now. There are two main problems - there's often no MDT (multi-disciplinary team) involved, and that means there's an important level of checks and oversight missing from the consultant's decisions (MDT working is mandatory in the NHS), and secondly, there's often no supplementary services such as access to a CNS/Macmillan nurse, ED clinic, counseling, etc. This is certainly not always the case with private practice - I know a CNS who works in private practice, and NHS hospitals with private wings do sometimes process private patients through their MDT. The cases I've seen which have gone wrong have all been those who went to a urologist, and ended up with them doing a prostatectomy (RP), which quickly failed. When I look back at their diagnosis, I think why the hell did you go for a RP, which was so unlikely to work? Then on further probing, I find it was done privately with no MDT. Then, when it goes wrong, they've got no CNS or team to go back to for what to do next.

Of course, I'm sure much private treatment goes fine - I am unlikely to see those patients. As an NHS patient, you can (now) go and have any private diagnostic tests and treatments you like, without losing the NHS connection. (10+ years ago, that wasn't the case - the NHS would usually drop you once you had any private procedures, but it's now required to cooperate with any private procedures the patient undertakes, sharing test results, etc.)

User
Posted 01 Dec 2019 at 12:16
The problem is that our population has increased by around 20% in recent years, therefore 20% more potential customers for the health service. Unfortunately, the NHS has not expanded at a similar rate...

Having said that, the treatment of my cancer on the NHS has been excellent, once you can get a GP appointment, of course.

Cheers, John.

User
Posted 01 Dec 2019 at 14:11

Andy62

It's very interesting. my treatment has been private as I have Medical Aid insurance here.

My process was annual psa tests and when starting to climb the GP referred me to the Urologist. I had the good fortune to interrogate both the Urologist and Oncologist on the route to follow. I had done a lot of research into PC and the decision was left to me. I went for the radical prostatectomy and after about 18 months the Radio Therapy.

Once my psa doubled to 8 in 6 months I was advised by both my GP and Urologist (independently with differing reasons) to chat to the Oncologist who gave me the option to take Hormone Therapy Injections. I have now had two, 12 weeks apart.

My oncologist was advised of my planned move to the UK and she was happy that the therapy could continue in the UK.

User
Posted 01 Dec 2019 at 14:13

John Bollinge

Hi John, does the demand vary on GPs depending where you live ?

My Mother in Law lives in Whitwick so we will looking for a place in the area

Regards Robert

User
Posted 01 Dec 2019 at 14:24

As far as I know, 3-4 weeks is typical, but best to ask your mum.

I sometimes need to see my GP after a hospital appointment. Since I often know about hospital appointments that far in advance, I book a GP appointment speculatively a day later. If I don't need it and cancel it, I see the slot has been booked by someone else within minutes, no doubt pleased to book a slot the next day.

The surgery keep back some slots only for booking on the day, for emergencies.

User
Posted 01 Dec 2019 at 15:08

If it’s related to my cancer, my GP will either see me or phone that day.

if I really want to see a GP, I can go to any of the walk-in centres nearby, of which there are three within 15 minutes’ drive.

The system isn’t perfect, but it’s pretty good.

I live near Maidenhead, but my family live in Belfast.  Supposedly the same NHS, but until my health needs have stabilised, there’s no way I’m going back home.  My family, some of whom have had cancer, are amazed at the treatment I’ve received in England.

Ulsterman

User
Posted 01 Dec 2019 at 20:25
"Of course, I'm sure much private treatment goes fine - I am unlikely to see those patients. As an NHS patient, you can (now) go and have any private diagnostic tests and treatments you like, without losing the NHS connection. (10+ years ago, that wasn't the case - the NHS would usually drop you once you had any private procedures, but it's now required to cooperate with any private procedures the patient undertakes, sharing test results, etc.)"

Not true in my case. I started HT at The Royal Marsden Sutton in 2007 as a NHS patient as a preliminary to Having RT there. However, I decided to have my IMRT with Carbon Ion boost as a private patient within a study in Germany and first run this by an expert on radiation treatment Worldwide. The Royal Marsden were miffed about this because they were offering me cutting edge RT in the UK but said they would be prepared to monitor me as a NHS patient thereafter. They did so and in due course referred me to UCLH in London for HIFU as a small tumour had again grown within my Prostate. I continue to be monitored by UCLH as a NHS patient.

I would only go outside the NHS for treatment not available within the NHS or where this was not offered to me. I did pay privately for a 68 Gallium PSMA scan for example when it was very difficult to get one on the NHS. (it's still not widely offered even now).

Taking a long term view, because you never know whether PCa will again require treatment, I would recommend a highly rated hospital as found largely in major towns. These not only have a lot of experience but often participate or even instigate trials so you get more individual monitoring and a chance to be involved in latest advances with more back up.

Barry
User
Posted 01 Dec 2019 at 22:21

Old Barry

When you mention larger towns would that be like Loughborough, Leicester or Nottingham, these are near Whitwick.

Robert

User
Posted 02 Dec 2019 at 03:13
Not an area I am familiar with but if I was living in your intended area, I would opt for the very major Queen Elizabeth Hospital Birmingham if my GP was able to refer me there with Nottingham University Hospital as my next choice. Other forum members may be able to comment more knowledgeably on Leicester and Nottingham.

Where I am in North Devon there is not a major cancer hospital, so while I would have to travel quite a distance anyway, I continue with UCLH in London which is 200+ miles away. It does mean that I have to present for scans or certain treatment as appropriate but normal check ups are done over the telephone by appointment. PSA checks are done at my local surgery and HT injections could be given there also if wanted.

Barry
 
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