Sutton, South London-new Living with Secondary Breast Cancer Breast service
Breast Cancer Care are launching a new Living with Secondary Breast Cancer service in Sutton, South London in January and will be launching the new service with an Overview Day on Thursday 22 January 2015
It’s a full day of information and support and chance to meet up and chat with others with a diagnosis of secondary breast cancer. It’s an opportunity to hear from expert speakers on the Medical Management of Secondary Breast Cancer, managing the symptoms of Cancer Related Fatigue and the chance to try tips and techniques for Relaxation. It’s also an opportunity to find out more about Breast Cancer Care’s services.It’s completely free to attend and all refreshments and lunch are provided.
The following monthly meetings will then take place on the fourth Thursday of every month from 11am in a central location.
If you’d like to book a place or would like more information about the Overview Day or the ongoing monthly meetings in Sutton then you can contact us on 0345 077 1893 or email secondaryservices@breastcancercare.org.uk
Best wishes
Carol
Thanks, Carol. Just wondering… what is the take-up so far? Anyone interested? Oversubscribed 
??? I would find it helpful to know whether this service offers short-term courses (e.g. 6 or 8 weeks) or is it a dropin that can be used on an occasional basis - or are there plans for it to be ongoing? It would be a pity if too few people take advantage of the effort BCC have made, to set up this service.
And how is it to be publicised? I’m a Sutton Marsden patient but I have not seen or heard anything about it at my clinic appointments or from my CNS (BCN).
Dear MrsBlue
breastcancercare.org.uk/breast-cancer-services/talks-courses-local-support/secondary-breast-cancer-services/living-secondary-breast-cancer
If you click through on the above link that will give you all the information about all of the Living With Secondary Breast Cancer services, including the location of each. There is a contact email address and phone number as well if you have any more specific questions.
I hope this helps.
Best wishes
Anna
Thanks, Jo and Anna!
Hope this new service - and all the ones already in operation - are well supported by those of us with mets.
Two more questions…
What is the total (approximate) number of secondary bc patients that this service supports per year? (2013 figures should be available, I guess)
How are these services publicised, in addition to being on BCC’s website? Are there leaflets or posters available in all hospital oncology clinics nearby a service venue? Do you regularly email all CNSs/BCNs about this? Every little helps, as the saying goes…
Dear MrsBlue
Wow, lots of questions! The answers will take quite a bit of sorting out and will involve many different parts of the organisation. The responses to all of these will take quite a bit of time to sort out and collate. We are experiencing staff shortages at the present time and do not have the resources to put to answering these questions at the moment. These are very pertinent and valid questions but I ask you to bear with us and it is unlikely that I will be able to get back to you with concrete answers until the New Year.
I have passed these questions onto your contact at Breast Cancer Care as well.
Best wishes
Anna
Thank you. Anna
“We are experiencing staff shortages at the present time and do not have the resources to put to answering these questions at the moment”
Sorry to hear that - whether it is because of staff illness or because people have left BCC (and this is a difficult time of year for recruitment!)
“unlikely that I will be able to get back to you with concrete answers until the New Year” January 2015 will be fine, much appreciated. Anyway, the info is probably somewhere in the 2012-2013 BCC Annual Report, but I can’t find this on your website - please could you post a link in a reply, so that others viewing this thread can read it if they wish? Or maybe it’s on the Sitemap - I can’t find this either - I know the old website/forum didn’t have a site map but I’m sure it’s there somewhere.
I have had a lot of chemotherapy and I do think I have some cognitive impairment. My wish for 2015 is that others with secondary BC can take up the baton and (working with BCC) help raise awareness to the level that it deserves. I am thinking of people with bone mets only (I have liver mets) and who are on Herceptin or long-term hormonal therapy, so their brain is less likely to be confused than mine is.
" I have passed these questions onto your contact at Breast Cancer Care as well"
Thank you again, this is important to me
Me again!
Just been to clinic today, CNS was ready with invitation to, and info about, the new service, including timetable for the launch day, so the message is getting through. Invitation was as from (signed) Carol Townsend, UK-Wide Services Coordinator.
I like the tactful wording “P.S. Your medical team have kindly arranged to forward this letter to you - please be assured your details have not been passed to Breast Cancer Care or anywhere else.” Not that it worries me at all, but I guess some people will find it reassuring.
No, not at Marsden itself but nearby. My CNS told me, when I asked, but I’m not sure whether I should post details on this thread. I think it is in Benhill Avenue, wherever that is.
But… if anyone from BCC (such as Carol Townsend) is reading this thread, I am a bit concerned, not knowing the venue, that it might be cold, uncomfortable chairs (launch day runs from 9.45 am till 4 pm, lunch is provided at this launch session)… enough toilets at ground level? Adequate parking whether for Blue Badge holders or “normal” parking…
I would like answers from BCC before I sign up. BCC *PLEASE* post your reply on THIS thread so others can see it. I am worried that the venue has not been checked out by someone with secondary bc… or has it? Seeking some reassurance!
Hi mrs blue
I have sent your query to the secondary services team and I am sure they will be on with a response as soon as they can
Best wishes
Lucy BCC
Thanks, Lucy!
I should have said… I see the logic of having the meetings at a different venue from the hospital where we are treated - I’ve lost count of the number of times I’ve been there over 8+ years!
Hello,
Thanks for all the interest in the new service in Sutton. We’re hoping for a really good turn out in January – 11 people have booked already but there are still spaces. And thanks Anna for posting the link to the services page where you can see how to book on.
With regard to the exact venue, we tend not to publicise this widely to ensure that people let us know they are coming so we can cater accordingly (we’d hate to not have enough lunch!) – but if anyone rings us we’d be more than happy to let you know. I can assure you however that we always do our best to select comfortable, accessible venues with good transport links.
As to how we market the service – we work very closely with local healthcare professionals so it’s great to hear from Mrs Blue that this is working well.
If anyone wants to find out more you can always contact the services team on secondaryservices@breastcancercare.org.uk or call us on 0345 077 1893.
With best wishes
Carol
Hi All
As promised, the details and answers to the questions mrsblue asked.
During 2014 330 women attended our face to face Living with Secondary Breast Cancer services around the UK. The number continues to grow every year as we expand our services. We work closely with local breast care nurses and consultants to ensure their patients are made aware of these services and whenever possible we also promote them through local cancer information centres, posters, fliers, general breast cancer support groups and any other means we can identify – sometimes we’re able to secure local press coverage too. And of course we use our own website and social media channels. In established services the women who attend are often keen to help and can be invaluable in identifying other places to advertise and also in encouraging their own doctors and nurses to let their other patients know that this support is available.
Many thanks
Anna
Copy (edited) of an email I sent to “UK-Wide Services”, Sylvia Ward, and “secondaryservices…”
I have just returned from the Sutton […] venue where I was
HORRIFIED to discover that the Secondary launch event was UPSTAIRS with NO
LIFT ACCESS!!
This is so STUPID on BCC’s part - and as you can see from the [postings]
below, there has been NO mention that the meeting would be upstairs. As it
happens, I can manage stairs but BCC have been DISHONEST not to mention this
in their reply to my email.
[The employees] at BCC have a job that you can leave - we patients have secondary breast
cancer FOR LIFE and we cannot just walk away from it.
I had been looking forward to the day - my CNS S[…] was planning to
be there, as was D[…] the Chelsea Marsden CNS - D[…] was at Sutton
and was a great support to me when I had my secondary diagnosis in 2006.
I am extremely disappointed with BreastCancerCare’s attitude to those of us
with secondaries. [BCC,] You obviously could not care two pence about us[edited]. You are not fit to be a charity that claims to
support people with a secondary diagnosis. I am sending a copy of this
email to the anonymous and faceless email address “secondaryservices”…
which I found on your website with GREAT DIFFICULTY because there is NO
SITEMAP so you can conceal the “secondary” side of things.
Thank you, Anna, for your speedy response!
I note the highlighted sentence - I have “chemo brain” so I failed to understand what normal people such as yourself, who do not have secondary bc, would have obviously realised, that the meeting was planned to be on an upper floor. I re-emphasise that this was NOT made clear at any point until I arrived at the venue. I would have liked to make a properly informed decision whether to attend or not.
And yes, there is a lift but my husband pressed the button and it did not work - we were told by someone at the venue that a special code was needed to use the lift. There were no notices/signage that I could see, about the BCC meeting, so we had to ask the reception people. For all we know, everyone else went up the stairs. Obviously NOBODY with SBC had been allowed to check things out beforehand.
Oh, and " as we are the only people using the venue that day then spaces will probably be available" THAT IS NOT TRUE!!! As I was going in, there were lots of people going to a choir… ON THE GROUND FLOOR.
I have edited a comment I made in my earlier post. I apologise to BCC, and to any Forum users who read it, that I went beyond what is constructive, It is my hope that the BCC Secondary team can learn something from today’s event at Sutton, and that this will help people with secondary BC in the future.