Secondary breast cancer campaign - good news

Public Archive
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Just wanted to share with you some good news we heard today.

We have been campaigning for many years for the Department of Health to collect data on the number of people living with secondary breast cancer, as we believe this is the first step to providing the care and support people so desperately need.

Today, the Department of Health announced that they will pilot the collection of data on the number of people living with secondary breast cancer this year, with a view to starting full collection of statistics on secondary breast cancer from April 2012. And if all goes well, in time they hope to extend this to cover other forms of metastatic cancer as well.

We want to say a big thank you to everyone who has helped us to campaign on this issue - it really wouldn’t have been possible without you.

Here is the official Breast Cancer Care statement from Jane Hatfield, Director of Policy & Research:

“Finding out the number of people diagnosed with secondary breast cancer is the vital first step to providing the care and support that they deserve and desperately need. So we’re extremely pleased with today’s announcement – it’s recognition that guessing is no longer good enough.

“Until now people with secondary breast cancer have been largely overlooked in the planning of NHS services, leaving them isolated and unsupported in the face of this incurable disease.

“Sadly some of the women who have inspired and participated in our campaign over several years are no longer with us to see this success – it’s a fitting tribute to their drive and determination that their needs are now being recognised.

“We’ll continue to work with people with secondary breast cancer to ensure that this commitment produces tangible improvements for them and we’ll support the DH in developing their plan.”

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Here is the link to the Department of Health document (“Improving Outcomes: a strategy for cancer”) - if you want to read about what else they’re planning:
dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_123394.pdf

And here is the link to the Department of Health press release with an outline of announcements: dh.gov.uk/en/MediaCentre/Pressreleases/DH_123438

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Thanks again for all your support.

Leah

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Brilliant news well done to BCC and all those who have worked to get this Pilot which will should result in better care and support for those diagnosed with secondary breast cancer.

It is well known that a secondary diagnosis is no longer a death sentance as many many people live long and fullfilling lifes with this diagosis and ‘living with cancer’ and ways to support people to do this needs to be high on the agenda for future goverments.

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A big thank you to all those who worked hard to achieve this. Your efforts are appreciated, even if we don’t say it often enough.

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Absolutely, well done BCC

Alison x

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That’s good news - well done. I had no idea until last week that this wasn’t done already - unbelievable really.

finty x

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Great news – tears in my eyes remembering “absent friends” who also campaigned for this!
Marilyn x

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Excellent news - delighted that BCC is taking such a strong line and that there is now some active response.
Fran
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This is fantastic news. I went to Westminster to campaign about this and it’s wonderful to hear that figures will be collated. A big thank you to BCC and all the people - absent and present - who took the time to make their voices heard. I’m so proud to have played a tiny role in this.

Alison x

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Great news, a big thank you to BCC and all those who worked so hard to achieve this for all of us we really appreciate all your efforts.

love Marinax

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Metatastic news! Sometimes feel like there’s this whole big secret society of us mets girls out there and, outwith sites like these, noone really talks about it and not even we know who the members are and how many people are in this club that noone wants to join! So huge thanks to all those involved - it’s a great start
DGW
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Breast Cancer Care have done stage 4 people like me a real favour with this. I do hope though, that the data collected will differentiate between stage 4 at diagnosis, and stage 4 after recurrence, since this could impact on the services that arise from this information. For example if the data revealed that a large number of people are stage 4 from diagnosis, this would perhaps suggest a need for more regular screening, screening at an earlier age, or different types of screening. Alternatively, if the data revealed a large number of people diagnosed stage 4 after a recurrence, this would perhaps suggest a need for more regular check-ups/monitoring, a longer period of monitoring, or the provision of therapeutics over a longer period.

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Here is a message from Jane Hatfield, Breast Cancer Care Director of Policy, Research and Planning:

"Thank you for all your messages of support. It reinforces just how important the work of the Spotlight on Secondary Breast Cancer campaign continues to be.

In response to Lemongrove, data will be collected on local recurrence, regional recurrence and distant metastases (spread to elsewhere in the body). This will include metastatic (secondary) diagnosis at the same time as diagnosis of primary disease and metastatic (secondary) diagnosis after treatment for primary breast cancer. Hope that answers your question.

In addition to the collection on the incidence of secondary breast cancer we have highlighted with the Department of Health that those with secondary breast cancer do not routinely have their medical management discussed in the multidisciplinary team meeting (MDT). As a consequence of our work with the Department of Health, the MDT will now have key responsibility for the collection of data on the incidence of secondary breast cancer which means that every person who presents with secondary breast cancer will have his/her case discussed at the MDT.

We know this does not happen for the majority of people currently so hope this leads to better coordinated care for all those living with secondary breast cancer."

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Well done.

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Leah, thank you for clarifying my earlier point, that’s very interesting.
Also thank you Breast Cancer Care for making the Department of Health aware that metastatic cancer patients do not have their case routinely managed by a multi-disciplinary team. Having had my treatment managed by two separate Oncologists (one of which organised a MDT to discuss my case), I know what a difference the input a range of a range of professionals working together can make.