Gold standards framework

Well, just over a year since my husband was diagnosed with bowel cancer, surgery in February 2016 (with colostomy bag), and almost a year of chemo (two different ones, Folfox first, then Irinotecan) we have now been told that none of these have worked and my husband's cancer has managed to spread through treatment regardless. The cancer is now in his liver (several areas) and peritoneal area. We saw the oncologist last Friday and he told us there was nothing they could do any more and that they were stopping the treatment and life expectancy was now 12 months or less.

To be fair, we always thought that would be the outcome of last week's appointment but it's still hard to deal with. My husband has completely lost his trust in doctors and even thinks that the operation and the chemo made him worse, so he just won't listen to them now...

So he just isn't planning anything, no will done (doesn't want to), doesn't want to see the GP, doesn't want to talk about the options we have for when he is very poorly like care at home, hospice etc. (I work full time and we have no family to help out).

The consultant has told us that he is discharging us and refering us back to the GP and that we would qualify for the Gold Standards Framework. Bearing in mind Andy is not interested in seeing any doctors now, I am very worried that his condition will deteriorate without the treatment and that it will be too late to plan anything when the time comes...

I am not completely sure what the gold standards framework involves either. Will the GP request to see my husband on regular basis to keep track of his condition? I mean he is really bad with doctors and I don't trust him to tell me when he is in pain just because he doesn't want to involve them. The only reason why he went to hospital a year ago is because he collapsed in a public place and they had to call an ambulance - if it had happened at home, he would have never gone.

I am just really worried I won't be able to cope later on if we don't start planning anything now...

  • Hi Froggybinou,

    A warm welcome to Cancer Chat. I’m very sorry to hear about your husband Andy’s bowel cancer diagnosis.

    My understanding is that the Gold Standards Framework encourages reliable and consistent support for patients. Doctors, nurses and care assistants working within this framework talk to their patients at the earliest and most appropriate time about how and where they want to be cared for. It means that, for example, if Andy would prefer to stay at home, the care team will do their best to support you with that. 

    I understand that your husband would prefer not to involve doctors, but your local GP surgery is the best place to start with enquiries about his care.

    We also have a team of cancer nurses who you can call to talk to if you’d like some support for how to go about discussing care – you can reach them on Freephone 0808 800 4040 (Mon – Fri, 9am – 5pm)

    It may be that some of our forum members have experience of this framework and will be along soon to offer some wise words, too. In the meantime, do keep in touch and let us know how you get on.

    Best wishes,

    Lucie, Cancer Chat Moderator