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Paying for treatment

Annabanana123
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Hi has anyone paid for their own treatment for cancer where the decision has been made by the hosptial /NICE/SMC thag there is insufficient benefit to justify cost etc? If so - how did you go about it, did you get charged the full price or what arrangements were made? Any advice much appreciated. Thanks 

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    Hi Annabanana,

    I'm in the same position, can't beleive I've just seen your post on this! I've literally been through hell these last 2 weeks with my oncology team. I was diagnosed as Stage 4 breast recurrence cancer which was a shock as I understand staging having been through this 10 years ago at the age of 30.

    I was stage 2 back then and had everything done, mascetomy and lymph node clearance as I'm braca" positive. I argued my stage as I beleive I am a stage 3C it's been 2 weeks and today I was finally told I was right about my stage no apology infact she said " Why are you so hung up on your stage?" your prospects haven't changed, sorry to be blunt but we will still only offer palliative treatment.

     

    2 weeks ago the same lady told me if I was a stage 3C I would have curative chemo as I did in 2013! I'm not sure what's going on but something isn't right and I need to trust my instincts on this, as should you. If something doesn't feel right we should be able to speak. 

     

    Hope you don't mind me asking, have you been told you have to fund your own treatment? I can't seem to get my breast nurses to confirm anything in writing. I can't understand why I can't have curative chemo if inoperable as it will still cure the cancer which is only in my lymph nodes. When I asked if I can have radiotheraphy I'm told it won't help me, if I ask why the get agressive in their response and no concrete answer to why. Today I was told to think of my oncolgists feelings as I wasn't happy to take palliative chemo.

    Sorry for the long message, hope you don't mind we asking why have the refused you and have they advised you on any costs should you want a certain treatment? I was literally only thinking this is all about costs.

  • Hi Annabanana123 and thanks for posting.

    It sounds like you are having a worrying time at the moment.

    If a treatment is not available on the NHS, start by talking to your cancer doctor. It is important to understand the treatment and whether it is right for you.

    This can depend on the type and stage of cancer you have, the side effects and risks of the treatment, the possible benefits of the treatment, any other treatments you have had and other treatments that are available.

    If you and your doctor agree that you would benefit from the treatment, you can apply to the NHS for funding. This is called an individual funding request.  There is some information about that here.

    You may like to ask for a second opinion about your condition and treatment.  This would mean seeing a different doctor or specialist.  You can find out more about this here.

    We do have information on our website here, which talks about other ways to access treatment and how it can be funded.  There is also information on clinical trials, which may be another route to consider.

    There is an organisation called the Cancer Drugs Fund.  It aims to make promising cancer drugs available to you. This is before the National Institute for Health and Care Excellence (NICE) approve them for use in the NHS. 

    The drugs available through the Cancer Drugs Fund have usually shown positive results in a research trial, but more information is needed to see if the drug is effective enough to be provided on the NHS.  You can find out more about this here.

    I hope this information is helpful.  I realise I have given you a lot to think about in this reply. 

    If you would like to talk this through with one of our nurses please give us a call on Freephone 0808 800 4040. The lines are open from 9am till 5pm Monday to Friday.

    Take care

    Rachel

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