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Secondary BC Awareness Day.BCC please pull your socks up

59 REPLIES 59
nursemakeyouwel
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

 
StickiVicki
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

StickiVicki
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

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. 

HelenL_BCC
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Hi mrsblue,

 

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:

http://www.breastcancercare.org.uk/about-us/who-we-are/our-trustees

 

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.

mrsblue
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

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.

Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Happy Breast Cancer Awareness Month, everybody!?!!!

Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Still no news... At this rate, we'll be lucky to get any mention of SBC in 2014's awareness day! Whatever happens now will clearly be too little, too late, especially given that the BCAM articles are already in print in the October glossies. This thread was begun way back on the 8th July and there had already been considerable discussion on other threads prior to that. The ongoing lack of interest from BCC is nothing short of an insult to us all. I really hope that lessons will be learned.

HelenL_BCC
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Hello,

 

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:

 

  •  Distribute our Standards of Care for people with secondary breast cancer to hospitals, GP practices and any healthcare professionals you come into contact with. The more people who see them the better.

  • Wales - Write to your AM about the importance of getting data collected on the number of people living with secondary breast cancer in Wales.

  • Scotland - Write to your MSP about the importance of getting data collected on the number of people living with secondary breast cancer in Scotland.

  • England - Contact your local Clinical Commissioning Group (CCG) to ask them if data is being collected on the number of people living with secondary breast cancer in your area and how they are using this data. The NHS Choices website has a handy search tool to help find your local CCG.

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 secondary@breastcancercare.org.uk

 

We'll be sure to update you on other ways that you can get involved in SBCAD soon. Thank you. 

Guest user
Not applicable

Re: Secondary BC Awareness Day.BCC please pull your socks up

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.

Guest user
Not applicable

Re: Secondary BC Awareness Day.BCC please pull your socks up

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. 

Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

No mention of SBCAD in the sickeningly pink October issue of "Woman and Home" that I flicked through at my mum's house today. Grrrrrrrr! Just a lovely make-over for the "survivors" with body confidence issues... And a piece on genetic and other risk factors... But apparently, W&H are supporting BCC, so why was there no mention of secondary breast cancer, our reality, or any of the hard-hitting issues and unpalatable facts that have been raised on these threads?

"Feel good, feel good, find it early and you will beat it" drivel! I thought we'd already established that this pink-wash is total boll**ks, or have I missed something here?! Angry? Disappointed? Frustrated? You're damn right!!!

Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

http://animoto.com/play/ewDt3xnaGKA9V9B53uDwmA

I just wanted to share the above link to a very personal story, with some very stark reminders at the end... Although the stats are based on the situation in the US, the fact that outcomes haven't changed in 30 years is something which I feel should be highlighted in any campaign about SBC.

belinda
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Unless I have missed something elsewhere I'm not sure why the poll is only for the nursing network? It makes more sense, I think, to ask their patients too who after all are the ones who are receiving or mostly not receiving adequate support. Lemongrove I think it's marvellous news you've been accepted by NHS England. Thank you. I'm sure I'm not the only one who is pleased your one voice will be listened to.
Lavenderlassie
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

A quick post to say well done to everyone campaigning on this thread before the next phase of the boards makes it too difficult to communicate.
Lavender
xx

mrsblue
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Thank you Lemongrove, you are indeed correct.
Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

I do feel that the lack of support at secondary dx and throughout tx for SBC is a problem.

However, I fully agree that the issues raised above are more important and far more urgent for those of us living with the disease and worrying about tx options and financial matters. As such, I would prefer BCC's focus to be on the essentials: let's get fair access to tx and benefits first, so that we can all live with more dignity and less stress for whatever time we have left. Once this is assured for everyone, then we can work on better support for people. If not, it's just another case of tinkering at the edges while ignoring the real problems.

Lemongrove
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Hi Mrs Blue.
With respect the study does not only refer to women over the age of seventy.
The first paragraph of the article states:
Women aged over 70 with breast cancer and women in all age groups with more advanced disease may be treated less aggressively in the United Kingdom than in some other countries, an international study indicates.

In other words women aged over seventy are treated less aggressively no matter what stage of cancer they have (possible ageism?), and patients of all ages are treated less aggressively in Britain compared to other developed countries.

mrsblue
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Lemongrove, as usual you have summarized the issues thoroughly and convincingly.
Just one thing to mention for clarification: the link to the BMJ study (published 2013, so as recent as we can get!) states in the abstract that the research was for women aged 70 and over - I cannot access the full article.
Lemongrove
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Firstly, thank you Mrs Blue and Vercors to links about the inadequacy of treatment for secondary BC. In Britain.

You may be interested in the link below to an article published in the British Medical Journal, The article describes a respected study which concluded that treatment for secondary BC is much less aggressive in Britain than other developed Countries, and that this may explain the relatively poor survival rates here. See link below.

http://www.bmj.com/content/346/bmj.f1405?rss=1&utm_source=feedburner&utm_medium=feed&utm_campaign=Fe...

Secondly, given that there is quite a lot of evidence that treatment for secondary BC is inferior in Britain, it is hard to fathom the statement by HelenL at BCC that while survival rates have improved, support has not kept pace.
Really? What evidence do BCC have that survival rates for patients with secondary BC have improved? I’m not sure that medics have even been collecting this data. Wasn’t failure to collection of data on secondary BC patients an issue BCC campaigned on?

In any case , I would suggest the issues that are having the most effect on SBC patients have nothing to do with lack of support . I fail to see how more Secondary BC Nurses can do anything about the end of the Emergency Drugs fund or the introduction of Value Based Pricing. Neither could they tackle the unrelenting reduction of drugs approved by NICE.
Similarly what could nurses do about SBC patients being denied DLA under DS1500 rules? Then of course there is the issue of ATOS bullying SBC patients into completing limited capability for work forms (despite DWP saying that this is not necessary).


Thirdly I do not think it’s necessary for BCC to survey it’s network of Nurses about why there is a lack of support. I think the answer is lack of money. For example, when I was in hospital recently there ,was only one qualified nurse on night duty. The nursing assistant had been moved to another ward to cover for staff absence . This in my view put patients at risk ,because one nurse cannot check drugs being dispensed, and respond to emergencies at the same time. If Hospitals cannot afford to provide adequate staffing levels on wards, what hope is there that they will pay for more secondary BC Nurses. So again more support for patients with secondary BC is a political issue .

Thank goodness BCC have recognised that body image is not the issue of greatest concern, but again BCC seem to be side-stepping the real issues, and focusing on those if feels comfortable with – namely lack of support.

Frankly BCC I think your organisation needs to face facts and accept that if it is to tackle these issues it has to start some hard non-party political campaigning.. This means BCC must change its cosy relationship with the State. For example, BCC should not in my view, be accepting funding from the Department of Health, because he who pays the piper calls the tune. Neither should BCC as a NICE Stakeholder regard itself as a trusted partner of NICE. BCC should remember whose side it’s meant to be on. BCC should be doing everything it can to prevent NICE banning Drugs and treatments, not just going along with so called medical evidence and rubber stamping whatever NICE want to do.
No doubt BCC will think this a bit harsh so to be fair I'm inviting BCC to name one single drug it has prevented NICE from banning

I’m not saying that partnership is necessarily wrong. In fact I recently applied to be a patient member on the medicines CRG at NHS England (NHS England are the body who are now responsible for deciding what drugs will be available when the Emergency Drugs Fund ends next March). I have now been accepted by NHS England, but what is key is that I am going into it knowing exactly whose side I’m on. Also even though I know I will have absolutely no power whatsoever (because the bottom line for NHS England is money) I will at least be a voice – and while it’s easy to ignore one voice , hopefully others will get involved – and lots of voices are less easy to ignore.

I personally want BCC to focus on the issues I have referred to above as a theme for SBCAD. How do others feel about this, and will BCC confirm that this is what they are going to do?

Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

I agree that it's a very interesting read with some difficult truths, but nothing that most of us didn't already know from our own experiences of the limitations of and gaps in our care as secondary patients.

Knowing that someone at BCC was involved in this study makes the organisation's attitude to SBCAD all the more baffling and disappointing, though. We really need to see some joined up thinking now...

Thanks for highlighting this, Mrs B., and thanks for providing the link, Vercors.

belinda
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Thank you vercors I read the link too, last night. It stayed in my mind and my thoughts kept straying back to it today, I found it a hard read and kept wondering exactly where I am on the scale...I'm lucky to still be here I know. I agree with mrsblue everyone at every level of BCC should read this. They (might) then understand the frustration some of us feel about the SBCAD plans and the way secondary breast cancer is portrayed here and elsewhere. x
doodlecat
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Thanks from me too. Very interesting reading and Thumbie you are correct provisions are haphazard. The nearest hospice to me is 112 miles away (as is hospital) so I am unable to access hospice services. There is a Maggie centre at the hospital which is also no good for me. I have to drive a 230 mile round trip no matter what treatment I am getting. In two weeks I have to do tjis on Tuesday then again on Friday as they are completely unable to co-ordinate appointments.

The level of treatment is without a doubt extremely variable. I read of women on here whose secondary cancer has been treated far more aggresively than mine. I presented with secondaries at the outset (after breast clinic spent years telling me I had cysts). I think they have not got enough experience of women with ILBC with secondaries at my hospital. Somtimes I think they expect me to be grateful they are keeping me alive. Oncology has now lost a consultant through illness and I have been told by a consultant in a different unit that Oncology are under pressure.

Thanks again for link.

June
mrsblue
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Thanks from me, too, vercors - pdf of the article now downloaded, briefly glanced at (the timeline graphs tell such eloquent stories) and saved in my "breast cancer" folder on my computer.
EVERYONE in BCC should read the article. Then maybe there won't be any more nonsense and trivialisation of secondary bc.
Thumbie
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Thanks for the link vercors. The article is very readable and not too technical. It's quite hard to read about the circumstances of others 'in the same boat' written in such dispassionate and analytic terms, but if those who are in a position to bring about change read this perhaps it will bring home the lack of a supportive infrastructure for those (us) with secondary breast cancer.
I think provision must be very haphazard. I have been lucky enough to have support from the hospice at home movement since shortly after my diagnosis with secondaries, and it was made very clear to me that the hospice was not just about the end of life but also about making the quality of life itself better. I have also stumbled across (ie not introduced by my NHS contacts) the Haven and Freshwinds (a well-being organisation in Birmingham) and have had invaluable complementary support from those 2 sources.

vercors
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Tanks Helen,
Mrs blue, it is an open access article and can be viewed here
http://spcare.bmj.com/content/early/2013/07/23/bmjspcare-2012-000415.full.pdf?sid=10c2a1b1-30f3-464b-b9a2-b602e44ea75c

mrsblue
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

There's also this recent post on the BCC blog,
http://www.breastcancercare.org.uk/news/blog/secondary-breast-cancer-care-found-be-inadequate?utm_so...
"Secondary breast cancer care found to be inadequate"
(If the link doesn't work, go to the BCC home page and look for recent blog posts)
This is about a study published in the BMJ Supportive and Palliative Care Journal - research by Liz Reed of BCC. Unfortunately the blog entry does not give a link to the article itself - I would like to read it!
Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Thank you, Helen.

HelenL_BCC
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Hi Angelfalls,

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,

Helen

Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Lots and lots of words there, Anna, but what are BCC actually going to do for SBCAD?!! And how can those of us with SBC get involved and get our message out there?

Anna_BCC
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Dear All

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.

Anna

Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Hear hear!

The recent announcement that NICE has also rejected Perjeta means that patients with advanced BC in the UK have now been denied SEVEN life-extending drugs (which are routinely available in Europe and the USA) since 2011. Surely this issue alone would get plenty of media interest and raise awareness of SBCAD. Add in the other MAJOR issues that LG highlights and you have your theme and focus right there.

Lemongrove
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Well BCC your represntative Liz said on the 19th July she would come back the following week to let us know what BCC plan to do for secondary BC Awareness Day, It's now the 8th August and no news. Please will BCC let us know?

There are many political issues that are having a devastating effect on patients with secondary BC, and focusing on Body image on SBCAD is beyond belief

For example, In March 2014 the Emergency Drugs Fund comes to an end and will be replaced by Value Based Pricing. BCC are saying that this is going to widen access to new drugs, but with respect, that is utter tosh. The fact is that it will greatly reduce the number of drugs available to patients with secondary BC, because drugss for these patients are frequently viewed as representing poor vlue for money (as many drugs for patients with secondary BC are expensive and do not add enough survival advantage). Value Based Pricing is going to reduce the number of drugs available. For more info look at this article
http://www.dailymail.co.uk/health/article-2352096/Cancer-patients-fear-losing-drugs-fund-lifeline-Fe...

Then of course ther iis the issue of people re-newing their claim for DLA under DS1500 rules being turned down.
Similarly there is the issue of terminally ill cancer patients who have claimed ESA under DS1500 rules, being asked by ATOS to complete Limited Capability for Work forms (ESA50), when the DWP state that terminally ill patients are not required to fill in this form. The issue here is that ASOS are receiving commission for every person they get off benefits, and so are casting their net wide. If a cancer patient doesn't know the rules they could easily end up being caught in the net. ATOS must be stopped doing this.

Add to that the remorseless ban of life extending drugs by NICE, and I would have thought there were plenty of issues to fill SBCAD - so come on BCC, stop the lsoftly softly approach and stqrt throwing a few punches. Please let us know what are you going to do?

belinda
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Hi Angelfalls, yes I agree. I feel we've been going round in circles for years.
Interested to read the final plans for the SBCAD next week. I'm still hoping some of the concerns raised here have been noted.
Angelfalls
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Anybody else feel like we're just going round in circles?

And why are most of the posts on the Campaigns board actually about Fundraising?

Guest user
Not applicable

Re: Secondary BC Awareness Day.BCC please pull your socks up

Apologies for the delay in responding to your questions and comments; it's been a busy few weeks.

We will come back to you on our plans for SBCAD next week when we have finalised plans, but I would like to come back to you with a bit more information about our campaigning work as requested.

Our small Policy and Campaigns team is guided by the perspective of people who use our services, including forum users, healthcare professionals and up-to-date research. The team works on a small number of carefully chosen campaigns highlighting the voice of people affected by breast cancer to health policy decision-makers and others who influence breast cancer care in the UK.

We campaign in areas where we believe we stand a chance of driving beneficial change in policy and practice as well as improvements in our own services and understanding. We ensure our campaigns are breast-cancer specific and don't duplicate the work of other charities. We add the voice of our breast cancer experience group to the campaigns of other charities where appropriate. For example, Macmillan has a large team working on welfare reform so we support their campaign but do not lead one of our own in this area. This means we can ensure breast cancer is not lost in such campaigns while using our limited resources to greatest impact.

The major campaigns we've been working on in the past few years focus on secondary breast cancer, older women and breast cancer and, more recently, body image, sexuality and intimacy.

Our Spotlight on secondary breast cancer campaign began six years ago because we were hearing from so many people that their experiences were vastly different and inferior to when they were diagnosed with primary breast cancer: we know that so many feel invisible and forgotten.

Through our campaigning work we have so far:
  • achieved mandatory data collection on the number of people with local recurrence and secondary breast cancer in England. We are pushing for similar measures in Scotland and Wales, and working with Public Health England to monitor compliance
  • raised the profile of the needs of people with secondary breast cancer in the NHS and charity sector by ensuring the National Cancer Strategies in England and Wales address the specific needs of people with secondary breast cancer. Scotland is currently reviewing its strategy, so we are working to influence this
  • highlighted the importance of access to a secondary breast cancer clinical nurse specialist and developed toolkits and training to support nurses in this role
  • involved sister charities Breast Cancer Campaign and Breakthrough Breast Cancer in raising the profile of secondary breast cancer in Parliament and with influential figures including Prime Minister David Cameron.

The older people and breast cancer policy work came from increasing evidence of inequalities in care and poorer outcomes for older people with breast cancer. We produced our first report in 2011 and presented it to the All Party Parliamentary Group on Breast Cancer. This powerful committee decided the issue warranted a parliamentary inquiry. We contributed heavily to the evidence, including submitting our policy reports and presenting research findings. The inquiry report was launched this week.

Our newest campaign is about body image, sexuality and intimacy, because we hear from so many women that they struggle in the long term with their altered body image and the impact of breast cancer treatment on their sexuality and intimate relationships. The anecdotal evidence is backed by research.

We hear that women and men often do not feel they should bother health professionals with these issues in the limited time they have at appointments or, if they do, that there's a lack services to meet their needs. The majority of the research evidence and our service feedback comes from people with primary breast cancer, but we also hear from a lot of people with secondary breast cancer too.

This policy campaign is not the one being discussed for secondary breast cancer awareness day, but a longer term campaign to bring about change in the NHS and government guidelines. You can read about the work so far and find future updates here on the link above.
We've been consulting with our advisory panel, which includes women with both primary and secondary breast cancer, clinicians, researchers and allied health professionals such as psychologists, lymphoedema specialists and therapists.

We also work on some reactive policy responses and consultations, for example, our clinical team respond to NICE (National Institute for Health and Care Excellence) consultations, lobbying hard for approval of new drugs to be approved, bringing our clinical expertise and the patient perspective to the table. We know there's been some concern that as a NICE stakeholder we may be restricted in criticising decisions. This is emphatically not the case.

We have also been working hard to make sure that nobody with breast cancer will lose out when the Cancer Drugs Fund comes to an end in January 2014. The Prime Minister has already made a commitment that anyone who currently receives treatment through the CDF will continue to do so. However we don't feel this is a strong enough commitment for the future of patients prescribed non NICE approved drugs. We've highlighted our concerns at meetings with politicians and at the Cancer Campaigning Group, a coalition of cancer campaigning charities that brings a very strong lobbying voice to any joint issues. We're continuing to seek concrete information and assurance on access to these essential drugs.

You specifically mentioned how our funding and connections may influence our activity. Being a NICE stakeholder does not stop us being critical of NICE's decisions or lobbying for change. In terms of funding from the Department of Health, we receive a relatively small amount of funding for specific pilot service development projects. But this doesn't affect our ability or willingness to highlight concern over decisions or standards of care. It is less than 1 per cent of our income and has no impact at all on our campaigning activity. Our priority is always people with breast cancer. If we felt a funding stream would restrict our ability to speak out for what we believe is right, we would not accept it.

With such a small team, we are always extremely busy, and updating our web pages may not always get the priority it deserves. But a great way to get up-to-date news is via our policy blogs, which highlight much of our most recent work.

The Policy Campaigns Team
Lemongrove
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Leah thanks for letting us know that BCC are reviewing the SBCAD campaign. Personally I worry that the fact BCC are NICE stakeholders, and receive funding from the Dept of Health influences what they choose to campaign on and how they do it. I do think it's time for BCC to prove whose side they're on.

Lynnq
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Having spent a very frustrating, depressing, infuriating and in the end tearful day yesterday seeking for travel insurance I would certainly reiterate the travel insurance issue.
i have occasionally felt that I am creating a 'bottle neck'......they can't cure me so I will never be a success story so I need to move aside to make way for the others. (And yes of course there needs to be plenty of time for them as well). 2 weeks after my bilateral Mx op I was told that I would have a follow up witn the surgeon in 12 months time. Since then I have had seroma issues, scar issues and what I think could be lymphodeme. My BCN is very good but I am told to pop along to the centre and they will fit me in between appointments, I then feel rushed because i am intruding on someone else's time slot...Am I not worthy of an appointment myself? I see the Onc every 3 months and there is no secondary breast care meetings in my hospital...........due to lack of interest!! Apparently there wasn't enough people attending to make it worthwhile.
sorry I think the frustration of yesterday caused me to have a bit of a rant.
Buffy3
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Just want to echo all tgat has been said by all the knowlegable ladies. I would just like to add a few other things that have come up for me recently that are an issue for all of us 1) Holiday insurance...or lack of it! 2) The need for secondary breast care nurses for all who need access (am sure I read somewhere that this was a NICE recommendation!), 3) Employers attitudes (they need educating, am able to do my job at moment, have a feeling they think I cant!), Buffy xxx
Guest user
Not applicable

Re: Secondary BC Awareness Day.BCC please pull your socks up

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.

Leah

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

scottishlass
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

BCC would you like to answer the question that has been put to you? I am surprised that you have made no comment as yet.

Lemongrove
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

BCC please would you reply to the question I asked at the beginning of this thread?

belinda
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Bump.
bertie
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

I agree wth all that has been said by Lesley, Val and others so don't wont to repeat what already been said. was am the lady who has just had my DLA renewal turned down. I am also very angry about the shocking news from NICE that they will no longer fund everolimus drug that is working for so many. These and other issues are what matter first most to me and other secondary ladies not body image.
Marina x

belinda
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Seems many more of us (me too) are being diagnosed stage 4 from the very beginning....bumping this to the top again.
doodlecat
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

In my case these prcocedures failed to detect cancer that was already there. Given the all clear in April 2012 (even though I presented once again with a lump). Diagnosed six months later with secondary ILC. I am still struggling to get through to oncology that ILC is extremely proficient at hiding. Allied to that is once diagnosed with cysts hard to convince anyone that the presence of cysts does not then mean that cancer is not there also. Can't find it to post at the moment but came accross a paper published by Scottish Government blaming the poor survival rates in this country on us for 'presenting late'.
Thumbie
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Yes, Mara, people need to know that you don't get secondary cancer (or primary for that matter) by beng lazy about self-examination or going for mammograms. Those procedures detect cancer that is already there. And as soon as you have a primary cancer you are at risk of secondaries, however early it is caught. Awareness of this is scary but accurate! I think people know this, but with the emphasis on early detection leading to a good chance of cure they forget it. I can understand BCC wanting to be positive and upbeat, nobody likes doom and gloom. But a little realism as regards secondaries on an awareness day would not go amiss.

MaraUk
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Good Idea Thumbie
I have yet to tell my dx to many people because of the I first reactions I had. The pink campaign seems to have had the effect that if you are dx secondary it must be your own fault. Questions such has when did you last have your mammogram were fired rapidly . Although I did not like it I can understand them because of the real truth about this dx is not out there.
I was just has ignorant the hardest part for me was getting over a straight secondary dx . I like them assumed it must be my own fault. I know now because of wonderful information on these boards and my own research tht this is an awful secret kept hidden well by the pink money machine.

At first I did not have the energy but my old fighting self is back. I will keep saying it BCC you are not representing the large proportion of women with this dx and those who will be dx in the future.
Thumbie
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

I would like to ask BCC how much they canvas those with secondary breast cancer seeking their points of view and problems they experience with life in general. I think they would find some patterns which arise from public perceptions of secondary cancer - often misconceptions - which exacerbate problems for patients. It would be useful to survey the public as well to find out how much is generally known about secondary breast cancer. My guess is that little is known about what it means to have this disease, unless you know someone with it. Yes, there is information on the BCC and the Macmillan site, but only people affected are going to access it. A high profile secondary awareness day could be a form of outreach to the ignorant.

Historygirl
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

Well said Val, and everyone else. Here's hoping BCC don't keep us waiting too long for a reply.
Della

belinda
Member

Re: Secondary BC Awareness Day.BCC please pull your socks up

I agree with all that's been said above and cannot add anything..the wise words from everyone's posts have said it all. I look forward to reading BCC's reply.