2nd opinion: I am still finding it hard to get my... - My Ovacome

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2nd opinion

AlpacaC profile image
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I am still finding it hard to get my head round how the nhs system works..... People say it's a postcode lottery for drugs but I think it's more a postcode lottery for getting the best docs. I can't get over a difference in opinion of one hospital just giving up as such and another seeming to chuck all resources at you. Even worse...because of one small decision in a GPS surgery thinking it was just a syst I ended up with the giving up hospital. I had 2 local hosp to choose from and I went for the larger one thinking it would be dealt with there.

Because of paper pushing i am now 6 months down the road in same position just disease spread. Why if one surgeon is not sure why can't they consult another hospital so we are not the ones choosing one surgeons word over another's.

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AlpacaC profile image
AlpacaC
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ketchup profile image
ketchup

Hi, I do think that ladies that go to larger cancer hospitals seem to get different treatment to the rest of us. The fact is that the bigger hospitals have trials. I go to a small district hospital for all of my treatment and appointments but all of my scans go to a MDT meeting in a larger hospital. All of your scans should go to a MDT meeting even if it's still in your hospital so it's not just the surgeon that decides your treatment. You can at any point change the hospital you go to if you live in England. If you are not happy with the care you are getting then I think you should think about changing. If you get bad service from a garage you wouldn't go back would you so why should you put up with treatment you are not happy with. Be strong and go for it, visit your GP and ask to be refered to the hospital of your choosing, the Gp wouldn't hesitate if it was his mum/ wife/ daughter who was experiencing what you are, and we need to be confident in our medical team. Good luck and Christmas wishes to you. K xxx

Whippit profile image
Whippit

I'm afraid NHS provision is varied across the UK and even within individual clinical commissioning areas. You will get very different treatment options at different hospitals. I've found this forum invaluable for doing some research and events run by Ovacome, Target Ovarian Cancer and Ovarian Cancer Action have all helped build up an arsenal of information to help make a wise choice.

When I joined three years ago I posted up a question asking if members would list the treatment options they were given and the centre they attended. You could see a wide variance in surgery, chemo and treatments though of course everyone in the UK will receive the gold-standard NICE approved drugs throughout their treatment.

According to Cancer Research UK's presentation at the most recent APPG it's the new drugs that are not yet approved by NICE but can be obtained via the National Cancer Drugs Fund that may well improve the UK survival rates and make us more comparable with the best in Europe and the US. I guess it will take a few more years to really gauge how much difference this fund has made to overall survival.

You won't necessarily be referred to the most famous centres if that centre can't offer you any different treatment than your nearest major centre. When I transferred from the Welsh NHS to the English NHS I found the experience very different with different advice, surgery and treatment options. I have never met any doctor or CNS who seemed to be less qualified or informed than another but there are some I felt I gelled with more than others so that made the hospital experience better.

At the end of the day I think it's important to find a centre that suits your specific needs and one you feel confident with.

I hope you can sort out this predicament of seemingly different advice from different doctors. In my case the different surgery techniques were just that my former hospital didn't have the resources to provide ultra-radical surgery so it wasn't offered.

Hope this is helpful, or at least of some comfort. I'd be happy to share experiences if you feel that would be helpful. xx Annie

vipervictoria profile image
vipervictoria

You are absolutely right. The best doctors tend to work in the big teaching hospitals. For ovarian cancer, the good centres are London, Leeds and Manchester. You can go anywhere if you live in England. I have a house in Scotland and the hospital there isn't large enough to have a consultant oncologist, so they have a registrar who can administer chemo and treat febrile neutropenia etc, but the treatment is prescribed by an oncologist working in a large centre. You have to remember the entire population of Scotland would fit into London twice over... You sound unhappy with the treatment you've had. It might be worthwhile discussing it with the Ovacome nurses. The number is on the Ovacome site. Best, Vx

thesilent1 profile image
thesilent1

Hi. I am in NI. My cancer was missed by my local hospital and for next 3 months was treated incorrectly by GP. Thankfully I managed to see a consultant gynaecologist on a private basis and luckily for me he specialised in gynaecological cancers. From then I have no complaints. The hospital that missed me was by no means small, perhaps I was just unfortunate.

You are entitled to request a 2nd opinion.

With regard treatment options, I was told the treatment I would be getting and not given a choice and to be honest that suits me fine. My oncologists are specialists in treating this disease, I am not so I will always be guided by their expertise.

We fishing you all the best. Ann xo

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