The link I was referring to yesterday is: http://spcare.bmj.com/content/early/2013/07/23/bmjspcare-2012-000415.full
Thank goodness Pinktober is all over! Now we can get back to the reality of being ignored without Pink survivors being thrust at us ALL the time ... now it will just be some of the time.
Interesting article in the BMJ about those with Mets not being supported, and from Southampton University too. Their Southampton University Hospitals Trust do virtually nothing to support patients. They have four BCNs so why isn't one a MBCN? BCNs in some hospitals attend appointments with the patient, give advice and support. I got grumbled at by one for being late for my prosthesis appointment because I was late due to changes in the road system since I last had the need to go from the centre of the city to the general hospital.
Please BCC note the title of that paper - Defining the illness trajectory of METASTATIC breast cancer.
Several of our trustees, including Jane Hinnrichs (our Chair), Emma Burns, Sybil Roach-Tennant and Jill Pask, have experienced a diagnosis of, and treatment for, breast cancer. We see it as essential that a proportion of our governing body has faced the physical and emotional challenge of this disease themselves. You can find out more about our policy about this on our website:
In terms of senior management, you can find out more about them here: http://www.breastcancercare.org.uk/about-us/who-we-are/our-senior-managers
As you can imagine, we don’t ask individual members of staff upon recruitment to disclose whether they’ve had a breast cancer diagnosis or not, and we also do not ask individuals to be public about their diagnosis or treatment. However, I can reassure that, like any workforce in the UK today, many of our staff working at Breast Cancer, have been personally affected by a diagnosis of breast cancer and that all of us work alongside a number of colleagues and volunteers who have been affected directly, and through close family and friends, by breast cancer.
We pride ourselves on having a wide range of skills and personal experiences, and ensure that throughout all our work, from governance and leadership to our daily comings and goings within in each of our offices, our staff and volunteers activities are guided and informed by the experience of breast cancer.
I hope this helps to provide some background and reassurance.
Socks? (to be pulled up) - BCC doesn't seem to have a leg to stand on!
I do wonder... maybe I should know the answer to this, or someone can post a link... is there anyone on the management and/or paid staff of BCC who has, or has had, breast cancer (primary or metastatic)? How can we find out? It might help avoid the "them-and-us" attitude which it's easy for people in my situation to fall into, "it's just a job for the BCC people, but for us with MBC it is for life.
Thanks for raising your concerns here, Jenanne and Angelfalls. I’m sorry that we don’t have more detail on the website about how you can get involved just yet, but the team is working on it. We hope to be able to launch the Secondary Breast Cancer Awareness Day campaign very soon.
In the meantime, I’ve spoken to the team here to get some detail on the ways we’ll be asking for support, and they’ve provided this info:
To take part in our campaign:
For details about how to find your political representative, see our guide ‘Tell them what you think’.
You can also join our Breast Cancer Voices group to hear about and shape our work on the Spotlight Campaign and Secondary Breast Cancer Awareness Day. And read more about data collection on our website.
To help us raise awareness in the media and with the public:
We want to make sure that secondary breast cancer appears in the media and the wider public domain, and over the last few years we’ve managed to increase the amount of press coverage of secondary breast cancer. As well as using up-to-date statistics, it helps engage journalists if we can put them in touch with people who are willing to share their story to illustrate the issues.
So, if you can help raise awareness by sharing your story on our new web pages, or by taking part in media work, please email firstname.lastname@example.org
We'll be sure to update you on other ways that you can get involved in SBCAD soon. Thank you.
I would like to know what I can do for Secondary BC Awareness Day in October, to highlight the issues that really concern people with advanced BC.
Angelfalls, you asked why, if Woman & Home are supporting BCC, there is no mention of secondary BC, or any of the hard-hitting issues and unpalatable facts that have been raised on these threads? Why indeed??
I too feel angry, disappointed and VERY frustrated - there is hardly even a mention of the October secondary awareness day on the BCC site!!
I already have visions of me visiting my local supermarket in October & being approached by someone in a pink, fluffy outfit with bucket in hand - I hope I don't end up socking someone in the jaw! I think you will understand why.
I've spoken to the team and have an update on SBCAD progress - I hope this helps answer your questions:
Following our survey of service users and voices about the theme for this year's Secondary Breast Cancer Awareness Day, which considered using body image as a theme for the campaign, we’ll now use instead an over-arching theme of the lack of support for people with secondary breast cancer. While body image resonated with many people, a significant number wanted to focus on the lack of support and other specific issues.
We’ll be referencing the recently published study by the University of Southampton and Breast Cancer Care which says that while people with secondary breast cancer are surviving longer thanks to better treatments, their problems are becoming more complex. Their lives are often dominated by trying to manage the disease and treatment, and they are not receiving adequate care.
Additionally, the Association for Breast Surgeons is planning to survey its members about the level of support that their patients with secondary breast cancer receive, so if the results are ready in time for our Secondary Breast Cancer Awareness Day media work, we will reference those too.
We’re also polling members of our Nursing Network (around 900 nurses) at the end of August to ask what they think about the level of support to their patients with secondary breast cancer. This aims to provide a media story particularly for nursing trade press and national health correspondents. We'll also use the results to support any case study features we secure in the press.
We’re now building new web pages for this year’s awareness day, and will launch these in September. Among other things we’ll be asking people with secondary breast cancer to add their personal stories and concerns to the web pages.
I'll be sure to update you all again as soon as these go live.
Thanks for the reminder to get back to you with updates on our plans for Secondary Breast Cancer Day. We’ve been so busy looking at all the feedback and chatting to everyone concerned that time has slipped by, and for that we apologise.
We’ve taken into account all the feedback from you our forum users, people using our services and recent research by our own Dr Liz Reed, which has now been published. As a result, we’ve refocused our plans for the day.
There are many issues about care and support for everyone with secondary breast cancer that deserves attention. So we have to decide how we can be most effective in influencing change, and prioritise accordingly. We believe that the best way to do this is to ensure messages from across Breast Cancer Care are consistent, especially in the areas that you have told us are important to you. This includes our healthcare professional training, secondary breast cancer services and Spotlight campaign focus.
When we developed the idea of holding a Secondary Breast Cancer Awareness Day, people told us how important it is to highlight the reality of living with secondary breast cancer to the general public as so few people understand what it means to have secondary breast cancer. While we hope that together we’ve achieved more awareness over the past three years, greater understanding is essential if our influencing strategies are to be successful. So this remains our focus for the day rather than it being a day for full-on campaigning.
The overarching message for this year’s Secondary Breast Cancer Awareness Day is that access to support has not developed to keep pace with improvements in the treatments that help control secondary breast cancer. Between now and the 13 October we’ll be working with our Nursing Network of more than 800 breast cancer healthcare professionals to understand better why this is.
As mentioned in a previous post, we too are very concerned about the planned closure of the Cancer Drugs Fund and the implications for access to drugs. We’ve been pressing for information on what will happen to patients currently using the Cancer Drugs Fund. In addition, we’re calling for value-based pricing to be a mechanism to increase access to drugs not restrict it.
Much of this work is happening in the background rather than as a public campaign and is in collaboration with other charities so that there’s a strong, widely informed and powerful voice on this important issue. In this way we will be heard by and have more influence with people who decide policy.
In line with our aims and objectives as an information and support charity, and with our experience over 40 years in the field, we know we need to adopt a variety of tactics if we’re going to be successful. We hope you will continue to support us with your ideas and feedback.
Hi everybody, I’m sorry we’ve not responded sooner. However, please rest assured we are aware of your concerns and I can promise you we’re listening closely.
We are currently reviewing the Secondary Breast Cancer Awareness Day campaign activity and will absolutely take onboard all the feedback you’ve provided about its theme and content. It’s your views and experience that help guide our campaign work.
As soon as we have them, we’ll be sure to include you in any plans we have for SBCAD.
Once again, apologies for this delayed response and thank you for your patience.
PS: bertie, I’m so sorry to hear your DLA renewal was turned down – please do get in touch with us if you feel you’d like any further advice or support: 0808 800 6000