I appreciate how you've carefully laid all this out, Rachel. I hope both of you are well?
"So I wrote to the MDT to ask them to consider giving the node the benefit of the doubt and try curative chemo-radiation." could you share the practical actions and format you used to do this - perhaps in an article? Is it a formal process or how do you know your request/information will be considered? Do you think a non-medical person's letter would have the same impact or taken with equal weight, as yours?
Thank you for sharing. Best wishes to you and Den.
All v good questions, Victoria, and something I will write about, for sure. It’s quite a long story how we got to the point of needing to do this, and I hope the need for it does not present itself too often for others. But it would make a good article.
Thanks, Rachel. It could even be your article, followed by a Part 2 Q&A based on questions raised in the comment section of your article.
Risk: Benefit is a difficult equation, but unfair if a patient's full context isn't understood, or if a patient feels rushed or abdicates the decision to a doctor, without fully considering/understanding things.
This is UK specific, but I know a few folks who may want to raise a few questions.
Gosh Rachel, you´ve opened my eyes wide to the minefield cancer is. I hadn´t realised that some hospitals refuse ops based on their own risk assessment which may differ from other centres. As you say, both are good evidence-based decisions. The dilemmas and surgery-shopping that go on further compound the stress. All very eye-opening and hats off to you for your diligent research.
Thanks Susannah - yes it's very unsettling for folks, but understandable as you say - I hope I got that across. Don't want to scare people. But I did sometimes wonder, on our journey, how people without a medical relative cope in the system when faced with a complex cancer. It's one reason why we need more GPs because they are well placed to advocate for people and help them navigate. But there aren't enough for the huge task!
Absolutely, Rachel. In the absence or limited GP time, this is also how additional emotional burden and responsibility are placed on carers who are not medically trained. Carers have to try to fathom what they can do, what options are available ..but often feel powerless or frustrated as you know.
I appreciate how you've carefully laid all this out, Rachel. I hope both of you are well?
"So I wrote to the MDT to ask them to consider giving the node the benefit of the doubt and try curative chemo-radiation." could you share the practical actions and format you used to do this - perhaps in an article? Is it a formal process or how do you know your request/information will be considered? Do you think a non-medical person's letter would have the same impact or taken with equal weight, as yours?
Thank you for sharing. Best wishes to you and Den.
All v good questions, Victoria, and something I will write about, for sure. It’s quite a long story how we got to the point of needing to do this, and I hope the need for it does not present itself too often for others. But it would make a good article.
Thanks, Rachel. It could even be your article, followed by a Part 2 Q&A based on questions raised in the comment section of your article.
Risk: Benefit is a difficult equation, but unfair if a patient's full context isn't understood, or if a patient feels rushed or abdicates the decision to a doctor, without fully considering/understanding things.
This is UK specific, but I know a few folks who may want to raise a few questions.
Restacking to a couple of folks.
Gosh Rachel, you´ve opened my eyes wide to the minefield cancer is. I hadn´t realised that some hospitals refuse ops based on their own risk assessment which may differ from other centres. As you say, both are good evidence-based decisions. The dilemmas and surgery-shopping that go on further compound the stress. All very eye-opening and hats off to you for your diligent research.
Thanks Susannah - yes it's very unsettling for folks, but understandable as you say - I hope I got that across. Don't want to scare people. But I did sometimes wonder, on our journey, how people without a medical relative cope in the system when faced with a complex cancer. It's one reason why we need more GPs because they are well placed to advocate for people and help them navigate. But there aren't enough for the huge task!
Absolutely, Rachel. In the absence or limited GP time, this is also how additional emotional burden and responsibility are placed on carers who are not medically trained. Carers have to try to fathom what they can do, what options are available ..but often feel powerless or frustrated as you know.
So true, Victoria - this anonymous, unpaid workforce that props up health and social care.