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Advice from those with secondaries to those with secondaries

14 REPLIES 14
Lemongrove
Member

Re: Advice from those with secondaries to those with secondaries

Angelfalls, yes, they need to be more democratic.

belinda
Member

Re: Advice from those with secondaries to those with secondaries

Lemongrove and Angelfalls I agree wholeheartedly!
Angelfalls
Member

Re: Advice from those with secondaries to those with secondaries

I agree with everything you say, LG, and don't doubt that BCC are committed to raising awareness of and improving standards of care for Secondary BC.

But I believe that they should really be including patients in the decision-making process; asking what we think the limited resources they have available to them should be spent on and allowing us to raise our priorities, then acting on that information. So, for example, instead of the group you took part in being told that money was going to be spent on a new leaflet on Body Confidence, I feel you should have been asked what you would like the money to be spent on. I suspect that the majority of those present would have agreed that BCC's valuable resources would be better spent on campaigning on the issues you mention... That could really have made a difference to awareness and patient care, something that I doubt very much will happen with the latest glossy leaflet.

Lemongrove
Member

Re: Advice from those with secondaries to those with secondaries

Angelfalls, I've had a look at BCC's recent accounts and it seems that raising awareness of secondary BC, and improving services is one of their major aims. However, while BCC are attempting to get medical professionals to sign up to various service charters, what BCC do not seem to understand is that most of the problems we as patients encounter have a political rather than medical origin (as you demonstrate when you talk about regional variations, and access to treatment in Wales). The sort of things that concern me are the postcode lottery; how non-routinely funded drugs will be accessed when the emergency drugs fund ends next year; how the emergency radiotherapy fund will be funded if the emergency drugs fund ends (because money for RT comes out of this fund).
So in my view, charities like BCC need to stop focusing on medics and start focusing on challenging political decisions. Trouble with this is though that although donations to BCC increased last year, their investments fell, and they seem to have dealt with this by greatly reducing expenditure on campaigning (this may explain why the secondary BC awareness day is turning into a flop).

Angelfalls
Member

Re: Advice from those with secondaries to those with secondaries

What a coincidence! I've just seen a report on the local ITV news about a man having to pay to be treated privately in England with Da Vinci surgery for prostate cancer, as it isn't available in Wales...!

Angelfalls
Member

Re: Advice from those with secondaries to those with secondaries

It's an interesting point about American patients perhaps seeing themselves more like customers and so demanding the best levels of customer service. I know I certainly have a lot to learn in that respect. But the way our health system operates really makes that difficult: I live in Wales where we have no access to the Emergency Drugs Fund and have to apply as individuals on a case-by-case basis because Health is one of the devolved issues. Similarly, it is practically impossible to get a second opinion in one of the best cancer centres, as we can only be referred to a consultant in England if it's for a treatment that cannot be offered in Wales. Otherwise, we would have to pay privately as the Welsh Assembly Government would refuse funding.

I also think that Mara has hit on an important point: those who donate to charities are donating for those who will benefit from that charity and so we should be the ones setting the agenda and having more input into how that money is spent. And I think the latest BCC survey is proof of how a charity's priorities may differ wildly from those of the intended beneficiaries.

Lemongrove
Member

Re: Advice from those with secondaries to those with secondaries

Thanks for the link Angelfalls.
I think it's noticeable how pro-active and willing to challenge/demand things, those responding to the American survey are ( with phrases such as get a second opinion, learn as much as you can, you are your own expert, ask questions etc). Maybe the fact that most American healthcare is funded by insurance makes those that have insurance feel like customers as well as patients (and customers can be more choosy/ demanding/assertive). I wonder if the vast army of uninsured people in America would answer the survey in such an assertive and demanding way?

It would also be interesting to know if the comments would be similar in a UK survey? In the UK we are told our healthcare is free. and judging by some of the comments on this forum, I sometimes wonder if this makes patients think there is no right to demand the best. In fact I think British medics can also take this view. I recall oncel asking an Oncologist to arrange an expensive treatment not routinely funded by the NHS. The Oncologist concerned replied "you've already had more than you should have". My reply was, my husband and I have spent 40 years of our lives working to pay 40% tax for this service, so yes I do expect the NHS to pay for the best treatment avalable.
Therefore my one-liner advice to someone with secondary BC would be - demand the best, you've already paid for it.

valkeh
Member

Re: Advice from those with secondaries to those with secondaries

Very good indeed! Thanks for sharing
x
Angelfalls
Member

Re: Advice from those with secondaries to those with secondaries

Or chemotional, as I like to call it... ;o)

Glad you enjoyed it, girls! xxx

belinda
Member

Re: Advice from those with secondaries to those with secondaries

Thank you for sharing this,
the happy music made me cry, in a good way...emotional, I'm coming up to the end of some recent chemo.
MaraUk
Member

Re: Advice from those with secondaries to those with secondaries

Hi Angelfalls
I saw this earlier so glad you know how to link. I think I need more computer lessons. It is good to have a laugh and share positive thoughts.
thankyou once again for highlighting the survey fracas.
I have been reading on the US sites they seem to be more vocal than us Brits particularly targeting charityspending.
Enjoy the rest of this beautiful day.
Mara
Guest user
Not applicable

Re: Advice from those with secondaries to those with secondaries

That was great and inspiring. I try to have a good laugh at something every day and have particular websites bookmarked that I know will have something hilariously funny on it. Laughter is my favourite medicene. Thanks for posting.
Buffy3
Member

Re: Advice from those with secondaries to those with secondaries

All of it resonated with me 🙂
Angelfalls
Member

Re: Advice from those with secondaries to those with secondaries

Just bumping!

Angelfalls
Member

Advice from those with secondaries to those with secondaries

As part of a survey, MBCN (an American organisation for people with secondaries) asked people to share the one thing they would like people to know about metastatic breast cancer. People were generally upbeat and many of the contributions took the form of advice from people with secondaries for people with secondaries. Here's a link to a slideshow of some of the answers, plus other people's responses:

http://community.breastcancer.org/forum/8/topic/805872

What would you say?