Look at the partners!!
It would appear that body confidence is a wider issue!!! But not for SBC 
I have no confidence issues at all just the worry of how long I can survive this curse.I have secondaries and found the questions in this survey do not relate to me one bit.I DON’T see how focusing on this will actually put any message across to any one.What are you hoping to acheive??Who actually thought of this?RIDICULOUS!
BCC, I would be grateful if you would answer the following questions and respond to the following suggestion.
Questions: When I attended a focus group session at BCC for patients with secondary BC, we were asked how we would feel about BCC receiving corporate sponsorship. We were also told that BCC were thinking about producing a booklet on body image which would contain tips and hints from patients dealing with secondary BC, and asked how we would feel about corporate sponsorship of this booklet. The questions I would like to ask are: (1) has the idea of corporate sponshorship come to fruition? (2) Where is funding coming from to pay for the secondary awareness day, and body image booklet ?
Suggestion: As Beanbob mentions above, information about the Spotlight Campaign is very out of date, and so we do not know what BCC are doing on the campaign front. My suggestion is for BCC to publish a monthly report on their campaigning efforts on this forum so that it is more accessible. I think if we all knew that BCC were campaigning hard on our behalf, people might be more forgiving when BCC make a cock-up (as they have in this instance).
I’ve just clicked onto the link Buffy posted at the end of page 2 here, click partners, (thanks Buffy!) and I now think there is even more reason to conclude the ONE day when the focus is supposed to be on secondary breast cancer will be an opportunity lost this year.
I couldn’t agree more!
And if you think it’s hard campaigning for SBC, try living with it!!
We need some real and sustained action on a real issue, BCC. I hope you’re up for the challenge…
Hi everyone
I tried write a long reply and lost it. ( Took me ages) so i will Just to say how much I agree with you.
i want my diagnosis to be recognised as the devasting illness it really is.
Mara
My concern is that if a specialised organisation such as BCC don’t know how to represent us, what hope do we have? I participated in the first two campaigns at Westminster and I think about some of the women who took part who are no longer with us, I feel we are letting them down if we don’t protest strongly about this ‘Body Confidence’ campaign. My feelings are this: we may not personally benefit from the campaigns we participate in, but we are paving the way and providing a legacy for people in the future. I find BCC’s response to our concern rather insulting, I feel they are tarnishing their reputation by not listening to our voices.
Alison
When I had my breast cancer diagnosis in 2006, the nurse at the screening centre told me about the charity BreastCancerCare and gave me a leaflet and contact card. This was a dx of primary bc, but I was told 3 weeks later that I had secondaries.
I am coming reluctantly to the conclusion that BCC has plenty to offer those with primary bc, but very little for those of us with secondaries. I do wonder - not for the first time - if we need a totally separate organisation to focus on secondary bc. It must, of course, be UK-based - the reason I don’t look at US metastatic bc sites is that we in UK can’t access the same treatments.
From now on, for as long as my health allows, I will try to continue to support others on here with secondaries, especially those with the “double whammy” (mets soon after primary dx). I have been keen to work with BCC’s secondary team, but there will need to be a miracle if this can achieve anything.
I think you may well be right, mrsblue; I don’t feel that BCC has much to offer those of us with secondaries, which is probably part of the reason why so many jumped ship to the FB group… If it wasn’t for the information and support I get from my peers on these forums, I’d be off too. So for hosting the secondaries boards on their website, I thank them.
But I find BCC’s lack of response today to the intelligent, interesting and heartfelt posts above really insulting and incredibly telling. I’m very disappointed in BCC, especially as it’s an organisation I volunteered my precious free time for in the past. *sigh*
Hello,
Thanks for your continuing interest on the this subject and for all your feedback!
A number of you have raised some interesting questions which I will try to answer, but first of all I thought I would explain a little on the background of Secondary Breast Cancer Awareness Day. In 2010 we introduced the day into the UK’s breast cancer awareness month (BCAM) following a lot of feedback from our users (both online and offline) about a lack of presence of people living with secondary breast cancer in the awareness raising campaigns. It was initiated originally in America, the same as BCAM, and is now in its fourth year here and is primarily an awareness raising day to improve the understanding and awareness of the needs of people living with secondary breast cancer.
However, importantly, alongside the media and marketing campaigns, as you know we have our longstanding policy campaign - Spotlight on Secondary Breast Cancer - which campaigns to improve the care and support available to people living with secondary breast cancer. I am sorry that the pages on the campaign have not been updated for a while, we are now currently updating them and we will certainly be doing so more regularly.
We are currently calling for:
- Every breast cancer unit to collect accurate data on the number of people with secondary breast cancer across the UK – guessing is not good enough.
- Healthcare professionals to support our Standards of Care for people with secondary breast cancer
- Healthcare professionals having enough training and support so that they can meet the needs of their patients who are living with secondary breast cancer.
Since the campaign was started in 2007 by a taskforce of people living with secondary breast cancer, we’ve had many successes, including:
- Collection of data of the number of people diagnosed with secondary breast cancer is now compulsory in England, which will make it possible to recognise the number of people living with secondary breast cancer and plan for treatment and care for this group. We’re currently working on getting the same commitment to data collection in Wales and Scotland.
- 8 Cancer Networks have signed up to work towards our Standards of Care for people living with secondary breast cancer. We’re working with them during the current changes to cancer networks to ensure their good work continues.
- We created a Toolkit for members of our Nursing Network who want to improve the nursing service they offer to their patients with metastatic breast and are having the first meeting of our new Secondary Nursing Forum this month, allowing nurses to highlight and share good practice.
- We have a publication called ‘Taking Action Together’, which is a guide to campaigning with us on the Spotlight campaign.
In addition to this, we are currently undertaking an evaluation of the impact the campaign has had to inform our future work – this report will be ready in October 2013 and we will certainly upload it and let you know of what we plan to do next.
With regards to your question Lemongrove about the sponsorship of the day and booklet – unfortunately at this point we still have not had any funding specifically allocated to the day or any of the activity around the day. Therefore we will be using our core funds to support the work.
Finally, just to reiterate that in addition to campaigning and trying to raise awareness around secondary breast cancer we also provide a number of support and information services around the UK, running (15) monthly Living With Secondary Breast Cancer groups, weekly livechats online, and a range of information booklets and resources.
So, as I said earlier – do continue to feedback on the campaign concept, we are listening and reading with interest.
With very best wishes,
Diana
Director of Services
I was just wondering if there is a dedicated charity in this country for SBC? I note that the forums here have been of a great support to me and I havw met some amazing women too. If I had the energy and means I would like to set one up, how would you go about that?
I have just started back at work (mornings this week), I came home at 1 exhausted. I cant imagine doing that full time but plan yo at least try. Other people inc employers and hr have little understanding. Another issue that needs raising. Off for more sleel now so I can get through sports day tomorrow.
Take care. x
I have always felt stage 4 is somewhat marginalised on the BCC forums, more so over the years. It’s deemed too frightening, (in my opinion) which may explain why this year’s Body Confidence is hiding a deeper meaning! A dedicated charity for secondary breast cancer would be wonderful!
I read some moving articles by Maurice Saatchi recently on losing his beloved wife to ovarian cancer. I don’t know much about the charity Ovacome, I shall have a read, a delve now I’m at the pc. But I don’t think ovarian cancer is portrayed in nearly the same, fluffy way as breast cancer?
I wouls love to raise awareness about this. In a mad moment I emailed Peter Andre as he has set up a charity as he lost his brother last year. He spends a couple of days a week at the hospital I go to(apparently), I was aiming to try to get him into my school as we have a high incidence of SBC/ BC of staff and family members. Am sure he wont reply but he has quite a high profile and Ive heard he is in Zanzibar. His campaign is quite an interesting one…worth a look. I never actually thought Id ever be in a situation where I looked at his website. I shall email again. He is funding CRUK roadshow…which raises awareness.
I know its not SBC but there must be people out there ready and willing to set up a SBC charity dedicated totally. We are over looked by the media, perhaps this is where the scariness originates from!
Oh well sleep for me…
Do keep us posted Buffy. 
Not so much about sponsorship but promoting the Secondary day in October and raising awareness I wondered if BCC had approached Woman’s Hour, with Jenni Murray being diagnosed. Woman’s Hour had a breast cancer week with only a small nod to stage 4 a few years ago. Or the lunchtime radio prog You and Yours…they feature so many campaigns and there’s also the PIP, DLA issues.
Kirstie Allsopp and her sister gave some interviews during the time Angelina Jolie went public and spoke of her mastectomy. Their Mum has been living with breast cancer for many years now.
BCC/Diana, thank you for answering my question about funding. I’m actually pleased that BCC haven’t secured corporate sponsorship for Secondary BC Awareness Day and the body image booklet. I was concerned that the decision to use body image as a main theme, may have been prompted by funding arrangements -as body image would be a perfect marketing opportunity for shops like Boots, Tesco, etc, wouldn’t it?.
I’m also very pleased that BCC are directing resources from their core funding for the SCBAD project. However, I do wonder if the reason the SBCAD project is so weak is because insufficient resources and staffing may have been allocated to it. Consequently, may I ask BCC how much money BCC have set aside to pay for the SBCAD project, and how many paid staff will be working on it?
SBCAD should be a a major project for BCC, because it represents a key opportunity to raise awareness of the critical issues that affect those of us with secondary BC (please look at some of the issues raised here for ideas of what really concerns us). Running a major campaign means having the will to direct adequate resources. Do BCC have the will to make SBCAD a major project?
Belinda, I was interviewed by Jenni Murray on Woman’s Hour two years ago on the subject of receiving a secondary diagnosis. This was organised by BCC. What I found really disheartening afterwards was that there was no mention of it on their FaceBook page, not sure it was highlighted on the website, either - certainly not with links. It’s still on the BBC website…I felt really disappointed. So often we miss these items (all media), due to lack of awareness they exist. I did post it on the forums, but it made more of whimper than the ‘shout’ I wanted. Jenni Murray, having had breast cancer, should be a sympathetic to the cause - she was certainly ‘on side’ during my interview. Her producer should be approached again…with some gusto. Or maybe I should write to her and ask if she would consider doing another feature…
Alison
Tawny/Alison, I think you should definitely write to Jenni Murray, because there has been a lot of interest in the media about the end of the emergency drugs fund in March 2014, the lack of alternative provision, and how that will affect cancer patients who need access to drugs not routinely funded by the NHS. I would have thought Womens Hour would like to hear the view of someone who might actually need access to the drug fund at some point.
Buffy3, with regard to setting up a registered charity for those with secondary BC. I would like to comment on this because prior to diagnosis, I worked in the charity sector for quite a while, and was, amongst other things, involved in advising organisations how to set up as registered charities. Also, since diagnosis, I have been involved with sweveral others, in setting up a charity www.ukcknetwork.co.uk As such I can tell you it’s not a simple or cheap process, and requires lots of organisation, commitment, support and funds. More importantly, I don’t personally think charities are the best vehicle for hard campaigning (and problems such as the funding of treatment are hard issues). In fact if campaigning is the primary objective of an organiisation it would preclude them from registering with the Charity Commission, as campaigning has to be secondary to the main purpose of the organisation. For example in the case of the Cyberknife Charity referred to above, it can legitimately campaign to raise awareness of Cyberknife, and to help raise funds for Hospitals to buy it, but it would not be able to put pressure on the Government to change it’s policy. In other words, we can say there is a problem, and try to fix it outselves, but we cannot do anything to force the Government to change things.
Consequently, I think that if those of us with secondary BC want the theme of SBCAD to be issues like cancer drug funding/standards of treatment/access to treatment/how it feels to live with a life threatening illness, we must either set up a separate campaign group, or put pressure on existing cancer charities, to put in more effort.
Lemongrove, I will need to look into the situation that you highlighted. I will definitely write to the producer of Woman’s Hour, I still have e-mails from them. I’m not sure that they would want the same person speaking again, but there may be others who would like to share their views. I’m actually taking part in a focus group at UCLH on Monday to discuss how they take forward their support programmes and groups. That’s something.
Alison
Thank you Lemongrove, I had a look at the Cyberknife website and I realise it ia not easy to set up a charity. Certainly the campaign route seems logical. I think this forum has high lighted many issues that we all have and I am sure BCC are taking all this on. Once again I thank you for your knowledge on these matters.
Hi Alison, I’m sorry I missed your interview on Woman’s Hour. The breast cancer features I heard were broadcast over 4 or 5 years ago, I remember this as I was listening to them as was Jenny (jennywren) and Jenny died in 2010. If Woman’s Hour should ever be lucky to have you as a guest again do let us know.
*edited to add looking on the WH page I see the articles I listened to were broadcast in 2004! Time flies etc!..I’ve tried to see if your interview was available as listen again but the service is not working at the moment…I’ll try again later.