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.
For anyone who’s interested. This is the interview i did with Jenni Murray for Woman’s Hour, first item on programme x
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/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.
Thanks for the link Alison, I’ve just listened to your eloquent interview. Would love to hear a follow up interview on WH.
Della
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
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
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.
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.
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!
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.
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.
Still no response from BCC, then…
Hi Angelfalls and Tawny
I will make sure this is passed on this evening
Kind regards
Lucy
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.
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
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).
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
Speechless…!
Thank you for the information Lemongrove.
Sadly I’m not really surprised anymore.
Oh well £21,000 won’t go far.