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Survey - Secondary Breast Cancer Awareness Day 2013

110 REPLIES 110
july541
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Bumping 😞
belinda
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Yes I read the Women and Home article too. Woman Frustrated

Historygirl
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Yep, sidelined yet again I fear Angelfalls. On another thread a BCC staff member said, just a few days ago, that final decisions on the approach to SBC day are still being made. Nice to see that they are ready and raring to go on our behalf.

Angelfalls
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Yep, those of us on "the dark side" have been pink-washed right out of the picture. Again...!!!

SP0
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

I finally realise that "body confidence" theme is BCC's theme for pink October for all bc, and the secondary day is falling within that...  see this month's Woman & Home,,,

 

http://www.womanandhome.com/diet-and-health/534691/body-confidence 

 

The full article in print features 6 women with their individual stories, beautifully presented, but  I was disappointed that none of the 6 scenarios seems to include secondary metastases.... 

 

Sarah.

 

 

 

Guest user
Not applicable

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Many thanks to all of you for your feedback and comments on the Secondary Breast Cancer Awareness day survey. As Diana mentioned above, the survey is now closed and we are busy collating and analysing all of the feedback that we have received from this and other channels of research. Your feedback is invaluable to us and we very much appreciate the time that you have all spent in completing the survey and leaving your thoughts. We will be back in touch with you soon to let you know more as we develop this year’s Secondary Breast Cancer Awareness Day campaign.

Leah

Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Bumping

Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Lizcat, with regard to consultation. I would be interested to know how BCC actually decide what issues they will tackle on behalf of those of us with secondary BC. I know that BCC do occassionally invite people to take part in focus group type days, but having taken part in one of these days, I personally felt the questions were heavily circumscribed. In other words, rather than being asked what our concerns were, we were asked how we felt about this or that campaign (I felt that BCC had already decided what issues it wanted to tackle, and just wanted our opinion on the detail).
The Spotlight Campaign does actually have some sound ane worthwhile objectives, in that it aims to standardize data collection, and improve standards of care through the training of staff. What I don't think BCC get though is that it doesn't matter how many standards BCC set, if the NHS doesn't have the resources, standards cannot be met, and patients cannot receive the drugs/treatments they require .
For example, I was in hospital over Christmas (a cancer ward). The ward I was on was divided up into about ten bays; each containing six beds. On one occasion I could hear buzzers going off all around the ward, and when a frazzled staff nurse appeared on the drug round I commented about the kerfuffle. She explained that she was the only staff nurse on duty, as another had gone off sick, and that due to staff shortages, even one of their nursing auxiliaries had been lifted to work on another ward. With the best will in the world, no nurse can provide the standards of care cancer patients require if they are rushing round like blue ass*d flies. I would also argue that one qualified nurse on duty is dangerous. Apart from anything else, how are the hospital ensuring that the drugs being dished out are being double checked? Similarly there was a chronic lack of junior doctors on duty at night/weekends, and this meant that people who required more pain relief were unable to get it. I personally witnessed a seriously ill cancer patient moaning in pain because they required more pain relief because nurses were unable to get hold of a doctor to authorize it.
Frankly I don't care a jot about body image. I want to know that if I require a drug/radiotherapy/treatment it will be funded. I also want to know that if I have to go into hospital there will be sufficient staff to look after me. These are the hard issues I would personally like BCC to tackle.

lizcat
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Couldn't agree more with all you ladies. I filled in the questionnaire with no to everything and put my comments about my concerns in the bottom box.

I was a double whammy person almost 6 years ago and have been relatively well til recently when appendicitis knocked me back a lot.

My body confidence is more a case of do I have confidence in my body responding to treatment long enough for me to have a drug that will treat it as a long term chronic rather than terminal illness. I am also concerned for my family and friends and how they deal with it - the Macmillan TV advert at the moment is excellent and hits the nail on the head in my opinion.

A point made earlier - how many people with sbc do the powers that be at BCC have regular contact with? To know how people feel, you need to speak to those affected regularly and read the secondary threads closely to see what concerns people have.

I am very grateful for this forum and some of the days that BCC run but think they are way off the mark with this one. The day needs TV exposure on say BBC Breakfast and ITV Daybreak Daybreak for a start.

Liz

Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Thank you Diana. Two more questions;
(1) With regard to the 874k you say BCC has spent on secondary BC between 2011-2012. Would you mind providing a break down of that please?
(2) Given that most of the people who have contributed to this thread have objected to the weak theme proposed by BCC for the SBCAD, and feel there are more important and controversial issues that BCC could raise, will you please confirm that BCC will now drop the original theme, and raise the issues discussed here?
Thank you again.

Diana_BCC
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Hello,

Thanks for your further questions.

Our Vision 2020 sets out what we want to achieve for people affected by breast cancer. To achieve this vision we need to considerably increase and diversify our fundraising income. Currently, 97% of Breast Cancer Care's services are funded from income raised by the general public. But unfortunately, we are overly reliant on it being raised by individuals participating in sometimes expensive and weather dependent events and a handful of loyal companies. Our brand is also naturally aligned to women’s high street corporate supporters – many of whom have struggled in the downturn, some have even gone into administration.

To ensure we can deliver our vision we must diversify our fundraising portfolio to be less reliant on these higher risk activities. For example, in 2010, only 8% of our net income came from more reliable methods e.g. donations by direct debit and we plan to increase this to 33% by 2020. So we are currently investing in more dependable, cheaper forms of fundraising but these methods drive up costs in the short term. Our new database is vital in achieving this and replaces our previous version which was installed in 1996 and no longer fit for purpose.

Our plans are rightly ambitious and we are already seeing the impacts of this change with an increase in income and a reduction in relative costs. But unfortunately until we have a solid platform of more reliable funding streams our services and campaigning activities remain vulnerable and exposed.

With regards to the specific spends on this year’s Secondary Breast Cancer Awareness Day, we agree we could do lot more with increased funds and we hope to gather further funding and sponsorship over the coming years. Overall in 2011/12 Breast Cancer Care spent £874K specifically on secondary breast cancer, as well as additional services that are budgeted to other areas of our work, such as younger women or our nurse training programme, but which were specifically aimed to support and inform around secondary breast cancer to that particular target. As you know, there is still a lot more for us to do and we will continue to increase our work and activity in secondary breast cancer within our plans in order to deliver on our ambitious Vision 2020.

There has been some very important feedback and views expressed on the forums for Breast Cancer Care to listen to. However, we have closed the survey and taken off the “sticky” on this thread and now have some work to do collating feedback. We will get back to you once we have further information.

In the meantime, my very best wishes and thank you,

Diana

belinda
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Thank you for the information Lemongrove.
Sadly I'm not really surprised anymore.
Oh well £21,000 won't go far.
Angelfalls
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Speechless...!

MaraUk
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Hi lemon grove
Just wanted to say well put as usual.
I am also aware of how well these boards and BCC support us.
That does not make me any less angry that they felt justified to pay £110.000 on a member of staff (were do these salaries come from)and only £21,000 on a secondary awareness campaign.
I know I am new to all this but I am already well aware to how our dx is treated. Lets get reality out there BCC . Use the money wisely.
Mara
Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Diana thank you for answering my questions. Before responding let me say I don’t’ want to give the impression that I’m knocking the work of BCC. I do recognise, and appreciate, the support and information BCC provide, as well as projects they run such as the Living with Breast Cancer Day and the Spotlight Campaign ( which as you rightly point out has successfully campaigned for data collection on secondary BC ).
However , I have to say the amount BCC are spending on the Secondary Breast Cancer Day project is pitifull. Some people might think 21k is a lot, but given between 2011- 2012, BCC had an income of over £12 million, and had millions more in assets and investments, 21k is small fry.
Personally, I would like to know why BCC have spent almost £5 million on raising funds (that’s 38p for every pound raised), £417 thousand on an IT Enterprise project, and over £110 thousand on an extra executive member of staff - yet are only spending £21k on the Secondary BC Awareness Day and 25k on the spotlight campaign?.
Surely, if awareness of the issues surrounding secondary BC is one of BCC’s four main objectives, why are BCC not devoting more resources?
Yes the secondary BC awareness day is only one day, but it could be a fantastic opportunity to show the world what people with secondary BC in the UK live with and concerns them. With adequate funding it would also complement the Spotlight Campaign. Public Relations Staff could easily generate media interest.
At the end of the day I wonder if the lack of funds for the SBCAD project is down to lack of will, rather than a shortage of funds. I also wonder if perhaps BCC shy away from controversial issues so as not to offend the powers that be (particularly as BCC receive quite a lot of funding from the Department of Health and are NICE stakeholders).

Diana_BCC
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Hello,

I am sorry I have taken a little while to respond to your further questions – I have been away from the office and we have been a little understaffed on the forums due to holidays etc.

Over the past few years Breast Cancer Care has carried a deficit, so although our income from donations were, as you correctly say, up on the previous financial year, we were still spending more than we were earning. We have worked hard over the past few years to re-address this balance by reducing expenditure wherever we can without affecting delivery of services or policy and campaigns.

Secondary Breast Cancer Awareness Day is just one part of Breast Cancer Care’s work for people affected by secondary breast cancer. In a sense it is the public facing and awareness raising side. As with all our work, we have limited budget to spend on marketing and communications - this year £21k is budgeted for Secondary Breast Cancer Awareness Day and the associated campaign materials and activities. This includes the staff time allocated to plan and deliver the awareness day. We try to be as creative as we can with such limited resources, but we rely heavily, as we do with all our marketing and communications, on press and PR coverage to come from editorial and journalists interested in the case studies and issues that we have raised. We do not have large marketing budgets per se, seeking instead for pro bono or gifts in kind advertising space for all of our marketing communications.

However, it is the Policy and Campaigns team and their work that has a broader remit and a separate budget attached to it, and this is where the majority of our campaigning resources and time are allocated. This is because we have taken the approach that more in-depth research and longer term on-going campaigns achieve more than one off marketing campaigns, although both most certainly play a vital role and contribute to each other’s success.

We have three main areas of policy campaigns that we are prioritising for the near future, the largest and longest running being secondary breast cancer. The other two campaigns are around older women and breast cancer; and body confidence or image following breast cancer (both primary and secondary).

Although it is a small Policy and Campaigns team (3 people), we have an excellent reputation for effecting change (for example we have met with the Prime Minister on two occasions now, which led directly to data on secondary breast cancer being collected). However, change in policy, care and treatment is slow. We have been running the Spotlight Campaign for over 7 years now, and although there have been some really positive steps made; we know that there is still huge amounts to do. Which is why, although we made reductions in our Policy and Campaigns team and admin support, we have not reduced our direct expenditure on any of our work within secondary breast cancer campaigning. Nor have we reduced or cut any of our service delivery – in fact this year we have been able to further invest in our secondary breast cancer services across the country. The Spotlight Campaign has also had a slight increased budget compared to last financial year with a total of £25k allocated to it.

The survey is now closed and we will be looking at all the feedback, both online and offline and considering options for this year’s campaign.

I hope I have answered your questions, but do keep discussing and debating the issue, it is important for us all. In the meantime we will keep you up to date with where we are at both in our campaigning and in the development of this year’s Secondary Breast Cancer Awareness Day campaign.

And on that note – just to let you know, this afternoon we are off to present the results of our research into the “Experience of People Living with Secondary Breast Cancer” to the All Party Parliamentary Group on breast cancer, we have three Voices attending with us and we are asking the MPs to support our Standards of Care for people with secondary breast cancer. We will report back to you as soon as we can.

With all best wishes,

Diana Jupp

Director of Services

ponsmuir
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Thank you Lucy. I have been away and have been most interested once returning and getting Internet again, in this thread.
Two questions: is anyone on the team living with secondary cancer, knowing what it feels like from inside? And when can we expect answers from you to Lemongrove's most pertinent questions?

Meanwhile, thank you for hosting this lifeline. The Forum is a magnificent support.
Lucy_BCC
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Hi Angelfalls and Tawny

I will make sure this is passed on this evening

Kind regards

Lucy

Angelfalls
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Still no response from BCC, then...

Tawny
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

I sincerely hope that BCC will reconsider this campaign and let us know asap. As I have stated before, I participated in the first two Awareness Days at Parliament. It felt like something special was beginning, but no data seems to have been followed up. Last year there was the online campaign - forgive me for forgetting its title, where we wrote about what it was like to live day to day with secondaries, but it seemed to be fizzling out even then. One of the problems is that our lives are up and down; people die; we fall ill; we recover; some of us are lucky enough to be non-symptomatic. We are ALL different. At the beginning of this year, I thought my chips were down. If you saw me in the street today, you wouldn't know that anything was wrong with me.

I am sure we all recognise that we also need to be recognised! In order to be recognised, we need to make people aware of what secondary breast cancer is. BCC focus on the more upbeat incurable but treatable line. I would argue that it is incurable with some people hopefully living longer due to research and new drugs being made available. Then there's the postcode lottery. My consultant tells me that there is a massive financial deficit at my hospital, which means that certain drugs are not available to patients. Drugs that could help me! I live in central London. My goodness, come on BCC, get passionate about us - we may not be the most reliable group (due to our various complaints), but we care about ourselves and all the other people who have secondary breast cancer. Help us make a difference, I would rather BCC did nothing than continue with this campaign. It's insulting our intelligence in a grave way.

belinda
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

I look forward to the replies to Lemongrove's questions above.
I hope the failure of the revamp of the forums and the long time it's taking to put things right has not caused resources allocated for other uses to be diverted. Many donations to BCC must be made in the memory of a secondary patient in the hope that BCC are then using this for secondary breast cancer purposes.
Thumbie
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

I feel for you doodlecat. I started working for an agency about a year after I finished chemo (for primary) because I was sort of elbowed out of my permanent job. So when I was ill and needed my hip replacement I was scuppered financially. It would be good if BCC could look at discrimination in the workplace. Much of it is silent but I'm sure research would show patterns of behaviour by organisations that would show fairly clearly that misconceptions about cancer lead to discrimination, some of it deliberate and some not, some even meant 'kindly'. The fact is, there should be a campaign about giving those with secondary cancer a voice and getting their voices listened to! As with all people with health problems there is a public perception of what is best which is not based on reality as experienced by those with the actual problems. Grrrr! Perhaps BCC suffers from this benign misperception itself when it thinks that body confidence is a number one issue!

doodlecat
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Thumbie, I couldn't agree more with your point that we are (often) walking around looking fine. My boss told me last week if I did not feel well enough to work a couple of days after having chemo we would need to sit fown and have a chat. I have not been off work either than days I am at hospital and if I am off work I do not get paid. Therefore I cannot work out why she feels the need for a chat. I work via an agency for Scottish Government. Everyone else in my office but me is paid if they are off work sick. I have started my own wee campaign raising awareness of discrimination against agency workers with secondary cancer (a catchy wee title). Scottish Government have an excellent policy of supporting staff with cancer but I am not included. The agency has never once asked me how I am. My boss said she saw a rv programme about someone who haf chemo with no side effects so I should be fine. All I need now is for to read via BCC raising awareness of living with secondaries that my main worry is I am not body confident then I am in real trouble as she keeps saying how great I look. Lemongrove be good to get answers to your questions.
Thumbie
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Hi, I have just stumbled onto this thread. I would like to thank contributors for their wise words and depth of knowledge.
I received an invitation to join in the survey by email. I was quite shocked to see the focus was body confidence and wondered how relevant it was to people with SBC. I did respond but had to work hard to find a way of explaining what I thought the 'body confidence' issues to be for me. That was basically not having confidence in how I would be from week to week, how long I would be able to carry on daily tasks, whether I could realistically think about applying for jobs. But this is not really body confidence, a better term would simply be uncertainty about the (inevitable but unknown) progress of the disease. And I think it important to have that uncertainty recognised as a feature of living with this disease as a chronic condition that might go on for several years, meanwhile affecting the person in lots of unknown ways. It's important that people understand that even though a person with metastatic breast cancer might seem reasonably OK, fatigue, pain and psychological impact cannot be seen but are nonetheless there. Similarly, while drug regimes can control things to an extent these powerful drugs can have unwanted effects which can be debilitating.
In some ways I found it easier when I was limping around, and then, after my hip replacement, using crutches. People can see you are not able to carry on as normal. Now I am walking around people seem to thnk I am OK. They ask when (not if) I am going back to work. There is very little understanding of what a diagnosis of secondaries means. Some people think you are going to peg out imminently and when this doesn't happen think you are fine for now. So perhaps a leaflet or info about the treatment for secondary breast cancer and the deterioration in physical well-being that can be expected would open a few eyes.
The other thing that always bothers me is that when survival rates from breast cancer are written about or discussed in the media it is always the 5 years point that is used as a benchmark. So, if you survive for 5 years that is counted as success story. I was diagnosed with secondaries just about exactly 6 years after my original diagnosis. So at 5 years I was a success story and at 6 I was not. At 5 years the cancer cells must have been quietly at work. Grateful as I am to have stayed feeling well so long after the original diagnosis I still think the 5 year data needs qualifying with an understanding that a proportion of people who seem to be in the clear at 5 years will not be in the clear long term. Perhaps BCC could do some work on clarifying this for the general public who increasingly see breast cancer as a nasty but nearly-defeated problem.

Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

BCC pleae would you answer my earlier question, and some additional ones?
(1) How much money have BCC set aside to pay for the SBCAD project, and how many paid staff will be working on it?
(2) In BCC's published accounts for 2011/12 , BCC claim that campaigning to raise awareness of issues surrounding secondary BC and to improve services is a major priority. That being the case why have BCC made major cuts to its expenditure on campaigning?
(3) I appreciate that BCC's income from investments was reduced last year, but income from donations was actually up on the previous financial year, so why the reduction in campaign expenditure?
(4) Do BCC think the weakness of this years Secondary BC Awareness Day Campaign is any way linked to lack of rescources being allocated to campaigning?
Would be grateful for a reply

MaraUk
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Hi Alison

Thanks for posting the link. I will try and listen today. Had a busy few days Hospital visits etc.

Lemongrove I was sorry to hear your news it is hard to be tough and double checking all the time we really shoulden't have to. Before BC I had an under active thyroid (well still have. Lol) i had to be my own adovacate took years to get it right. most doctors could not see out of the box and treatment was totally controlled. My response was to research and fight. Jjust got it sorted and then this happened. I was astonished to find that I will again have to be mine own advocate Well at least I have had some practice.
take care everyone
mara
Historygirl
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Thanks for the link Alison, I've just listened to your eloquent interview. Would love to hear a follow up interview on WH.
Della

Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

Tawny/alison, I agree with Belinda, and am sure WH would like to interview you again. From my perspective I would like to hear how things have panned out for you since the original interview, and whether it's more difficult to have SBC now than before (this is where they could ask you about the end of the Emergency Drugs Fund).
Please write to them.

belinda
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

I've just listened to your interview Alison...thank you for the link! It would be marvellous if WH asked you to guest again. x
Tawny
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

For anyone who's interested. This is the interview i did with Jenni Murray for Woman's Hour, first item on programme x
http://www.bbc.co.uk/programmes/b016x22t

Guest user
Not applicable

Re: Survey - Secondary Breast Cancer Awareness Day 2013

I am sad to find out since having a secondary breast cancer diagnosis, that instead of us all being cared for and looked after and given all the best treatments that are available, some of us are being overlooked and it seems like the funding for certain things is being withheld, which is alarming and unfair. I only hope this changes in the future and as more of us are surviving we can stand up for ourselves and stop this happening.
belinda
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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.
Buffy3
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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.
Tawny
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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

Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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.

Tawny
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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

Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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.
Buffy3
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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....
belinda
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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?
Buffy3
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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
Diana_BCC
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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

Angelfalls
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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*

mrsblue
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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.
Tawny
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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

MaraUk
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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
Angelfalls
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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...

belinda
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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.
Lemongrove
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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).

smk
Member

Re: Survey - Secondary Breast Cancer Awareness Day 2013

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!