HI all
Breast Cancer Care’s Secondary Breast Cancer Taskforce has produced a short film which you might like to see. It can be viewed at
breastcancercare.org.uk/content.php?page_id=10797
on this site.
I hope you find it interesting and do feed back to us here with any comments.
Best wishes
Ann
Interactive Services Manager
It was interesting but only really told me that the Secondary Task Force exists! I’m still not clear where it came from, what are the scope and limits of its remit, what it is planning to do, how I can get involved, how it intends to gather information, etc. Also when did it start? - if it’s just the beginning then that could explain the lack of clear plans. If it’s been going for a while, then it all seems a bit vague and not to be moving in a particular direction.
I’m not sure it should be putting so much effort into the keyworker issue. Much better would be to campaign for more research and statistics on secondary BC so there are facts for sufferers, and for the Task force as a baseline, and to inform its future direction.
Jacquie
The Taskforce has been around for a couple of years. Like Jacquie I am concerned about loads of resources going into the keyworker issue.
Jane
Jacquie,
The Secondary Taskforce has been in existence for more than 2 years and has, as you say, achieved little and has few clear plans.
Yes, we need statistics, but that should have been started two years ago. Statistics are not an end in themselves but a first step in being able to plan and resource services. There was demand for these, so the Secondaries Taskforce did have a Mandate.
The keyworker idea was entirely theirs and was publically announced without checking for support. However, it is dead in the water anyway, so no further resources should be thrown at it. There are very few specialist secondary breast care nurses and, when the subject came up ages ago on this forum, most gave little support for having them. Mostly, this was because we had a poor opinion of our generalist breast care nurses and we also felt we wanted most of our queries answered by oncologists. For easy stuff, you find the answers here or search the internet. Remember that BCC, unlike Macmillan, doesn’t provide funding for any nurses to work within the NHS, so they are in no position to push for these secondary breast care nurses. Other cancers don’t have an equivalent to a breast care nurse so why do we get different treatment anyway?
My views about the article in Woman & Home featuring Sue Keir also apply to her inclusion in this film. Her life is not representative of most with secondaries. No one life could be.
Holey
It will be interesting to see what comes out of Mike Richard’s Cancer Reform Strategy (due to be published at the beginning of next month) as he is going to address secondaries.
I wonder whether, instead of pushing for a secondary breast care nurse, this should already be in the remit of the Macmillan Nurse as part of the palliative care team.
The taskforce have asked those of us who are part of the reference panel group to write to our MPs to urge them to attend a meeting for MPs in London this coming Monday to highlight the issues for those of us living with secondaries.
Specialist nurses in other cancers are beginning to be employed in hospitals - we have one for Upper GI and also colorectal cancers.
My feeling is that I’m really pleased that Breast Cancer Care have taken up our concerns/issues as we have or have the potential to have a voice rather than as individuals.
Pinkdove
Pinkdove,
The last thing I’d want my MP to attend, is a meeting arranged by BCC about the problems faced by those with secondaries, when BCC have yet to convince us they understand these! Describing secondary breast cancer as a chronic disease, putting forward Sue Keir as a typical person with secondaries and trying to foist secondary breast care nurses upon us, all show little understanding of what we really want.
The last time we were ever consulted in depth, was when Liz Reed conducted a survey a few years back. This research was the basis of her Masters degree. We understood at the time we were participating, that we would eventually get a summary of the results but we haven’t. Why?
Possibly, someone (e.g. Head of the Taskforce?) should start a thread on the secondaries forum for us to list what WE want. From the raw information collated on that thread and any strong opinions unearthed by Liz Reed’s questionnaire, a new questionnaire could be prepared. Sadly many of the people (perhaps most) who completed Liz’s questionnaire are now dead and circumstances change over time, so a new questionnaire is needed.
Holey.
Hi Holey
I just get the feeling that we’re at the beginning of how we get our voice across. My MP has been really supportive as he has written to Alan Johnson to highlight my concerns and although it’s typical politician speak hopefully we’ll start to get the message across - it has to start somewhere.
Are you a member of the reference panel? I do feel that BCC are trying to up our awareness - no one else is.
I agree with you that Sue Keir can only represent herself and isn’t a voice for all of us as we’re all at different stages. I was told last year I had 3 months to live so I’ve hit rock bottom and felt all manner of emotions plus not being well has a huge impact on how you can cope with things.
I think your idea of a questionnaire is really good - I wonder if BCC will take that up?
Pinkdove
Could we start a thread to that effect, and then get the moderator to bring it to their attention? Don’t know if that could work.
Jacquie