I just wanted to say that I went along yesterday to the campaign and really got a lot out of it plus it was nice speaking to a couple of you (silverlady and Dawnhc).
Paulinep and I already know each other (we were in the BCC fashion show in 2003) and have kept in touch since then so we made a day of it yesterday by going down earlier and having a meal with our friends.
I thought it was so good that so many of us went and also had the opportunity to have our say as well. I raised the question about the data and the reply that I’d had from Ann Keen, MP.
Hopefully this will be the start of awareness of what living with secondaries means and hopefully it will continue to be an issue until we get what we need. I do think though as one of the speakers said about secondary breast care nurses - they are different from primary breast care nurses as their skill set has to be different especially when dealing with the psychological aspect and a lot of the primary b.c.n. don’t have that expertise (ours certainly don’t and have said that).
I was also there yesterday so heard your question pinkdove. Sorry didnt meet you. But good to meet dippykate, dawnhc, india1, lynnc, Heatherlou, deirdre, jennywren and to have a drink with some of you. (and the woman from the Isle of Wight…sorry can’t remember your user name.) Great contribution to the discussion from dippykate.
Meeting people was the best bit for me. Both Mike Richards (the National Cancer Director.) and the people from the BCC Secondary Taskforce identified 2 key issues:
identifying numbers with secondaries…currently no national data recording registry
support for people with secondaries. Proposals for consistent key worker approach.
Several women in the audience identified a third issue: access to drugs and tretaments but I felt this crucial area was rather brushed aside. This should be one of the key priorities. Great contribution from a French woman who rightly said its all very well to look at the non medical issues of having secondaries but UK is behind US and most of Europe in access to trials and latest treatments.
Interestingly Mike Richards did say about 12,000 people a year are diagnosed with secondaries. Never heard someone in a key position quote this figure before, but it kind of makes sense from what we know of primary diagnosis rates and death rates. (He also referred to the problem of defining secondaries and would have liked to hear more about that…an issue for me with an incurable regional recurrence which some people say is Stage 4 and some don’t…always feel in a real triple negative minority around that.)
I thought Joan Bakewell chaired the meeting very well and was impressed with the oncologist Jacinta Abraham.
The Secondary Taskforce has been around for 2/3 years now and I think its taken rather a long time to get this first campaigning meeting…lets hope things move faster now. I was rather diasppointed there was no herbal or fruit tea, and I did chuckle at the enormous quantity of cream scones, but was too busy talking to eat one. Overall a good event.
Fully endorse your thoughts - even down to the cream scones!!! I was quite surprised as well that Mike Richards said
about 12,000 people a year are diagnosed with secondaries. My oncologist last week said to me that it is quite complex to collect data on secondaries because of the definition of it.
I also thought Jacinta spoke brilliantly and Joan Bakewell chaired the event really well.
Are you a member of the reference panel or advisory group? I’m on the reference panel.
I think it was Jacinta that mentioned ‘quality of life’ and this is so important.
We had to leave straight afterwards to get our train at 8.00 otherwise it would have been good to meet up with a lot of you. I suppose because some of us don’t use our real names on this forum it was difficult to know who was who yesterday.
Am really glad that I went and I hope there will be a conference/workshop sometime in the future for secondaries and pooling all our experiences together to be able to go forward to inform health professionals on what we need.
I’m the woman from the I.o.W.!! I really enjoyed meeting some of you last night, sorry i couldn’t join you for a drink but had to catch the ferry.
I agree with both of you ( sorry,Pinkdove, can’t remember if i met you) the evening was informative for me and like you Jane i would of liked Mike Richards to go more into depth about def. of secondary cancer ( also got incurable reg. recurrence and was told it’s stage 4, I’m also triple neg - will find out on wed if c.has spread to other organs)
Let’s hope the evening was a major step forward…
It was a well organised event and I was glad I went. But I did get the feeling that this event might be billed as some sort of “consultation”, even though it didn’t feel very much like the feelings of the people there were being taken on board in any sort of formal way.
It was interesting that the panel were all asked what their priority was. And they all answered “A key worker for people diagnosed with secondaries.” I suspect that had they asked the audience what our priorities were we might have had a different response.
Mike Richards did say that the issue of fast track routes to drugs as they became available was something he was talking to NICE about, and that it would be included in the new cancer strategy. I wanted to know what the timetable for the new cancer strategy was, but unfortunatley didn’t have a mike in my hand and Joan Bakewell rather skillfully moved the disucssion on. DippyKate’s question about how do we find out about trials was ignored.
I came away thinking that there should be some sort of charter of rights for people with secondaries. It should include:
. Access to a named key worker for everybody upon diagnosis of secondaries.
. Harmonization of policies and procedures regarding access to new or trial drugs. This would put an end to postcode lottery we currently have. There were two women in the audience whose circumstances were, they said the same and who were being treated by the same oncology team, but because they lived in different PCT areas one was receiving a drug that the other had been denied access to.
. A register of all trials currently available. (I think this is available for large scale trials but not for first or second line trials).
. A right to any aids and adaptations we may need. (I don’t want to have to scrabble around for a wheelchair).
. Free prescriptions. We are told that cancer is becoming like a chronic illness. Why should people with diabetes get free prescriptions and we don’t?
. The automatic provision of counselling services to be made available freely to patients and their families/carers.
These are the things I would like to see the task force lobbying for. Frankly, I don’t much care whether I am counted or not, even though I can see why it makes sense.
However, the NHS is a mighty ship that cannot be turned round quickly, and I do despair that even the counting task appears to have come up against so many “can’t do that” beaurocrats. I know from personal experience how difficult it was for the National Patient Safety Agency to simply get all practitioners to wash their hands as they moved from patient to patient (I was involved in getting that campaign off the ground). But for goodness sake, shouldn’t we be ambitious in our campaigning?
Thanks ladies for coming back and filling in all of us who couldn’t go.
I agree with all the points raised there certainly seems to be a need for harmonization of policies etc.
Sorry I missed out on the cream scones!! Yummy!
Allie
Derdre
I could not make the meeting but would have liked to attend.
I fully agree with the comments you made and feel they should be lobbied for now
I am especially interested in the access to trials and information about them, this seems to be information that is available for the chosen few
I was denied access to a drug and I have taken on the might of the PCT to get it, awaiting their decision. We need access to new drugs and we need access now, we cannot afford to wait for decisions that are made by committees. Our needs change quickly and often so out choice of treatment has to match our needs qust as quickly
Mills
I thought the evening was interesting but did skirt around some of the issues which are most important to us with secondaries, most of which have already been alluded to on this thread.
While I appreciate the concept behind ‘key workers’ I would be very surprised if this gets very far. Where on earth will funding come from for such a diverse project, especially given the extremely straitened state of the NHS?
I hope that BCC will post a report of the proceedings for the benefit of those who who could not attend though Deirdre has summed up the evening pretty succinctly.
What I enjoyed most was the opportunity to meet so many of you. It really should be easier for us to do this so I do hope BCC come up with a ‘Regional Forum’ in order that this may be a little easier to achieve in the future.
I was there yesterday but did not get to meet all of you which was a shame. I was a bit over whelmed. I did get to meet a few of you but did’nt realise there were so many of us there from this site.
We (my sister and I ) got a bit lost at the end otherwise we would have come for a drink. We were a bit concerned we would not make it back to the hotel.
I can’t really add more than deirdre has - well done for putting it across so succinctly.
I felt the BCC met their aims of pushing for a ‘keyworker’ and the collection of stats but as Jane says how will it be defined as secondary or local recurrence.
I felt Joan Bakewell was a good chairperson and she did take up points raised but the questions about the way different PCT spend their budgets and the clinical trials questions were just blatantly ignored.
I also pointed out that one of the ladies who posts here was asked by a leading women’s magazine to do an interview about having bc but then when they found out she had secondaries - they didn’t want to know. You just don’t see articles about ‘living with secondaries’ in the main media just specialist mags like Amoena. It’s that pink and fluffy thing!!! Good news sells unless you are an exceptional person like Jane Tomlinson - and I think we are all in some way ‘exceptional’ and ‘special’ the media are not interested in the rest of us living with mets. The media lady from BCC did come up to me afterwards and say they were working with the media to try to address this issue but it was a slow job.
I really enjoyed meeting everyone and sorry that I did not manage to meet some of you and spend more time with you all on the ‘getting to know you’ basis. I think that is what most of us gain from these forums is the sharing of experiences and that need to physically talk and meet someone in a similar situation rather than post on open forums when you don’t know who is reading the posts.
Hope that something regional can be done as we stand more chance of getting change for women with mets as a bigger group than as individuals.
Sorry Fay, that we lost you - hope you had a good night anyway.
Kate
Sorry we didn’t get to meet. Were you the lady near the back with very dark hair cut in a bob (if my memory serves me right, and wearing brown with stripes)? I remember noticing two women just before we all left. Sorry for poor description and apologies to whomever I am describing in such poor terms!
Well I should have said something i didnt realise how may people would be there! Also I had the same thing happen to me to what happens when i got to see my oncologist i take so much in my brain stops working so I was thinking about questionsa t 4am! And got really annoyed with myself cause normally you cant shut me up! I was so tired though and didnt get the scones!
Was lovely to meet everyonr I did and heather I would love to see the “how very dare you” !!! i laughed so much thinking about that…my friend Kay that supported me was totally gob smacked i think its good for my friends to come to things like this.
Dawn i would love to get a copy fo photos if possible??
With my feedback form im going to ask a couple of questions about this keyworker thing why do they not look at other groups like mental health and learning disabilities i was a key worker for years (thats how bad my brain was the other night i couldnt get this out) its not about a key worker knowing everything its about them assisting us to access generic services.
I work in strategy at the moment and was trying to find out with re: to the cancer reform strategy, what consultation was done, how much the secondry task force informed the strategy, what were the plans for monitoring and review.
Im sorry again i was not very vocal as i had promised but i know what to expect next time!
I’m beginning to think the keyworker thing is a non starter. I’m not keen on the idea that people with secondary breast cancer would have a ‘key worker’ while people with other secondary cancers and other life threatning illnesses wouldn’t. Yes the provision of support and information is clearly patchy, and there’s a need for improvements in communication from many health professionals but is the ‘key worker’ concept the way forward? Not sure. In my area hospice nurses working with GP seem to perform the function well but clearly that doesn’t happen everywhere.
I was looking at the BCC folder we got on Wednesday and the campaign title: “Time to be Heard” is fine but I don’t like the strapline underneath: “Giving a Voice to people with secondary breast cancer.” The concept of “giving” a voice is incredibly patronising. I have for a long time felt uncomfortable with the UK breast cancer charities which seem to be so much charities FOR people with breast cancer rather than OF people (yes they do consultation but tend to ‘give’’ a voice to mainstream and ‘safe’ views and airbrush out other views.)
Jane yes you are right it always seems to be the ‘safe’ views. I wondered how much input BCC had been given in the Woman’s Hour Secondaries programme as Jenni Murray quoted the 80% stats and also mentioned the ‘cure’ word.
I was interested in Kate’s media posting as a friend of mine raised thousands of pounds for a cancer charity, often swimming with the seals in Scotland. A TV crew pulled out of filming her after her brain mets diagnosis, her account can be read here, hoolet.org.uk/43hoolet/tide
She was then advised not to attend a support group she had helped get off the ground as her mets diagnosis might upset the other women.
I think, I hope things are improving but there’s still a long way to go…
I think Ameona are going to do an article on secondaries in their next edition and are currently working on this so it’ll be interesting to see what happens and how we’re portrayed. I think they have input/stories from ladies who have secondaries.
I feel the only way we can lobby is by writing to our MPs and that’s why I raised the bit about stats at the meeting - Ann Keen, MP has written twice to me (two pages) about the stats, key workers and signs and symptoms but I felt it was all just a brush off even though I challenged her in my last letter. If people feel comfortable about it we all need to write to our MPs highlighting our concerns and the campaign plus a lot of the issues mentioned above.
I also set up our support group 10 years ago Belinda and have mentioned, from time to time, about secondaries (we have 3 of us who attend) and the breast care nurse said to me that people don’t want to hear about secondaries even though we don’t talk about ourselves in the general group but have told them about the campaign and that doctors need to be aware of the signs and symptoms, etc. I wish someone had told me of the signs to look out for beforehand because I would have gone to my GP much earlier than I did. I appreciate that it’s a scary thing and it’s getting the balance right but I also think there’s a bit of a ostrich in the sand attitude as well.
I think there’s a long way to go as well but at least it’s started.
Hi pinkdove. My friend I mentioned who helped start the support group died this year. I’ve seen an improvement albeit a small one since my own mets diagnosis, 2003.
I think, even here on the forums, we don’t always write about our symptoms or voice our fears for fear of upsetting others.
Belinda…x
So sorry to hear about your friend, it’s hard isn’t it especially when we’ve got secondaries as well. I lost a very close friend as well on 19 September and she’d moved up to our area after she was diagnosed with secondaries and had little or no support up here. The information she got was through me and introducing her to our support group.
I was diagnosed with mets in 2004 so you’re a year ahead of me! Long may it all continue for us!
I agree with you it’s hard sometimes to put it in words just how hard it can be but thank goodness we have sites like this and bcpals.
It was great f meeting some of you, and realising I am not so isolated as I sometimes feel.
I agree with many of the points raised and am glad I went to meeting, but hope that some concrete goals come out of it.
I too have a horrible feeling the pushing for a key worker will deflect from some of the more immeiate concerns over getting the drugs we need-more support would be great, but I know my main concern is survival!
I also think that macmillan nurses have the ideal set of skills to offer more support, but frequently have very high case loads of people with complex needs. Perhaps we don’t need another specialism of secondary breast ca nurse, but more funding and support for palliative care services that are already out there, with much better signposting from the professionals we are already in contact with.
I hope as well hat we do get some regional forums so we can form our own support groups, as I think the best part of the evening for me was meeting you.
One of Breast Cancer Care’s press officers has asked me to pass this on.
Take care
Sam
Moderator
Breast Cancer Care
‘I have just been reading this thread on the discussion forums and noticed forum members saying how the mainstream media don’t interview people with secondary breast cancer. I thought people would like to know that Woman & Home magazine interviewed Sue Keir who is on our Secondary Taskforce in its October issue. Unfortunately the article isn’t available on their website at the moment but I will ask them to upload it. If they can do this I will pass on the link.’