Have a listen @METUPUKorg was mentioned with our campaign #BusyLivingWithMets thank you @Debbie_abrahams shame you couldn’t make the meeting but interested in what will become of the #BreastCancerDebate #secondarybreastcancerhttps://t.co/rPwTpXRlSq https://t.co/PkQ2KhV494
— Jo Taylor (@abcdiagnosis) November 12, 2020
For some time now, the general public has been able to connect into Parliamentary debates of particular interest to them (it’s not a new thing for COVID), and today a number of METUPUK members watched the debate by the All-Party Parliamentary Group for Breast Cancer online – about which we’ve been encouraging everyone to contact their MPs! You can find a transcript of the debate on Hansard.
The WhatsApp group for the METUPUK team was busy whilst this was on was certainly a lot speedier than the debate happening on the screen (comments on the repetition of content – within both this session, and feeling like heard the same debates for last 6-7 years with no action moving forward, the pale/male/staleness of those present (although this is interest for something often seen as a women’s issue, this was interesting in itself), the bouncing between breast cancer and generic cancer care in relation to COVID)…
Having said that – judging by the tweets, there was a lot of questions asked that fit with METUPUK aims and objectives – but the proof will be in the actions that get taken (of which there didn’t seem to be any clear ones set at the end of the debate)…
We thank @NHSEngland for the effort it has put into finding ways to safely diagnose and treat cancer during the pandemic, says @craig4nwarks
— APPG Breast Cancer (@APPGBC) November 12, 2020
“We must look into the future and ensure that the progress we have made is not allowed to stall or be forgotten”#BreastCancerDebate
A 2018 @APPGBC report showed that while breast cancer outcomes were improving, that was masking stark geographical inequalities and variation between primary and #SecondaryBreastCancer patients, says @craig4nwarks#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
Much of the current discussion on cancer focuses on early diagnosis of primary breast cancer, says @craig4nwarks.
— APPG Breast Cancer (@APPGBC) November 12, 2020
While that is a crucial part of any cancer strategy, “it is important that people living with #secondarybreastcancer are not forgotten about.”#BreastCancerDebate
“We don’t know how many people are diagnosed with #SecondaryBreastCancer each year, how long they are living for, the spread of their disease, or the treatment and support they are receiving, despite data collection being mandatory since 2013.” @craig4nwarks.#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
Yep, this has been ongoing over EIGHT YEARS and we are still debating this, where is the ACTION & ACCOUNTABILITY ? #secondarybreastcancer #breastcancerdebate @METUPUKorg @craig4nwarks @Debbie_abrahams
— Jo Taylor (@abcdiagnosis) November 12, 2020
Glacial change ❄️ https://t.co/O86EDhjSwE
100% – this is what @METUPUKorg is pushing for … so we can be #BusyLivingWithMets and take longer to be #IAmThe31 https://t.co/uiUyRifJMS
— Dr Bex Lewis #IAmThe31 #BusyLivingWithMets (@drbexl) November 12, 2020
It seems so obvious doesn’t it – honestly we have so much paperwork the data must all be there somewhere … https://t.co/qKWi9aO5Ge
— Dr Bex Lewis #IAmThe31 #BusyLivingWithMets (@drbexl) November 12, 2020
“Having a CNS as part of someone’s care is the biggest driver in improving patient experience, but a 2019 @BreastCancerNow survey found that less than a third of #SecondaryBreastCancer patients had seen a CNS regularly.” @craig4nwarks.#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
“The commitments made by the @DHSCgovuk on the @NHSEngland Long-Term Plan require investment in training and expanding the CNSs workforce to meet current and future challenges. We need the full @NHSEngland and @NHS_HealthEdEng People Plan.” @craig4nwarks.#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
“We have to do so much better”, says @BrineMP, highlighting that 11,500 still die from #breastcancer every year and that the challenges were already there before Covid-19.#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
The science behind secondaries is really not common knowledge. People think that they might be unlucky and get "another" cancer as opposed to the idea that the "new one" actually stems from their first one.
— Claire Worthington – Ranty McRantface (@WorthyOnTheWeb) November 12, 2020
I don't need a CNS – I need #drugaccess and #clinicaltrials to survive @METUPUKorg #secondarybreastcancer #IAmThe31 31 women dying every day… lets focus on how to increase survival and to be #BusyLivingWithMets #breastcancerdebate https://t.co/4gsD7Gaq2F
— Jo Taylor (@abcdiagnosis) November 12, 2020
More #secondarybreastcancer patients will be dead by then (2-3 year median life expectancy) & the target of no one will die of SBC by 2050 … that’s 30 YEARS AWAY ano 345,000 dead women & 2,400 men will be dead where’s the urgency like COVID? ACTION & ACCOUNTABILITY @METUPUKorg https://t.co/kE21L4zsJi
— Jo Taylor (@abcdiagnosis) November 12, 2020
Hey @BrineMinister EIGHT years ago there was a pilot scheme to collect data & you stood there for a photo – you say you don’t want to be here in ano 10 yrs talking about the same thing – it’s already happening…
— Jo Taylor (@abcdiagnosis) November 12, 2020
ACTION & ACCOUNTABILITY
Who is? @APPGBC @METUPUKorg
talking about a report from 4 years ago….
— Jo Taylor (@abcdiagnosis) November 12, 2020
Any wonder we are annoyed? We are dying here and there is no urgency.
no action or accountability again @METUPUKorg @Debbie_abrahams #IAmThe31 #secondarybreastcancer https://t.co/UMcZLPHrxK
“What lessons @DHSCgovuk can we learn from the speed with which trials for coronavirus have been set up and how can we apply this to setting up clinical trials for #SecondaryBreastCancer?” @JimShannonMP #BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
#breastcancerdebate https://t.co/V98MDiT6KB
— Jo Taylor (@abcdiagnosis) November 12, 2020
data & statistics @APPGBC so data is held with the radiotherapy depts?? Crikey this is new … But what data and it’s not necessarily the right data and inputted correctly – don’t use the pandemic as an excuse @craig4nwarks this has been going on over EIGHT years @METUPUKorg
— Jo Taylor (@abcdiagnosis) November 12, 2020
#breastcancerdebate https://t.co/ZD68yoSs4K
— Jo Taylor (@abcdiagnosis) November 12, 2020
“Will @DHSCgovuk act to support medical research charities, and ensure that vital health research can continue to progress, at the upcoming #SpendingReview?” @AMRC @JimShannonMP#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
Cancer research funding will be back to normal by 2022…ish. pic.twitter.com/qHauEwGoJz
— Thanks Cancer! (@ThanksCancer) November 12, 2020
“Innovations need investment. We also need to assess the capacity of the workforce. And a need in general to recruit more nurses and radiographers”, says @JNHanvey, highlighting that the post-Covid recovery plan must include investment in the cancer workforce#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
.@justinmadders highlights that 2021 is 6 weeks away for @NHSEngland Long-Term Plan commitment that every patient, including those with #SecondaryBreastCancer, will have access to a CNS – and calls for workforce investment@LabourHealth#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
“Clinical Trials provide a vital opportunity for patients to access new treatments, specially those with #SecondaryBreastCancer”, says @justinmadders, calling for more investment on charities medical research @LabourHealth @AMRC#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
“Going forward I don’t want to see Covid being the ‘derailer’. I want to see us seizing some opportunities that have come about”, says @Jochurchill4, thanking @NHSEngland for rising to the challenge.@DHSCgovuk#BreastCancerDebate
— APPG Breast Cancer (@APPGBC) November 12, 2020
by then 345,000 women and 2,400 men will be dead – its THIRTY years away! Where is the ACTION and ACCOUNTABILITY to push these issues? @METUPUKorg 31 every day #IAmThe31 we need so much more with #drugaccess access to #clinicaltrials better radiotherapy and surgical pathways … https://t.co/3wyVSrJeH4
— Jo Taylor (@abcdiagnosis) November 12, 2020
Once again more focus on primary and early detection! I AM DYING FOR A CURE . 2050 won’t help me . We need more access to drugs, clinical trials .
— Charlotte Kevan #Iamthe31 (@Charlottekevan) November 12, 2020
But @Jochurchill4 you are focusing on early disease & not #secondarybreastcancer – we need much more than just CNS – we have major problems with #drugaccess and #clinicaltrials & this is the problem we have with SBC – that will improve our survival not a CNS@APPGBC @METUPUKorg
— Jo Taylor (@abcdiagnosis) November 12, 2020
Hi @Jochurchill4 we still don’t have any information back from you from January in our meeting with the 71,000 signatures with @BreastCancerNow and you said that you would look into data & statistics – when are we getting an answer?@APPGBC @METUPUKorg #BreastCancerDebate
— Jo Taylor (@abcdiagnosis) November 12, 2020
At today's breast cancer debate in parliament, the chair of @APPGBC, @craig4nwarks, raises the importance of not forgetting about those with secondary breast cancer, and calls for a national audit and more funding for clinical nurse specialists. pic.twitter.com/1nNPVj6d6R
— Breast Cancer Now (@BreastCancerNow) November 12, 2020
Thank you @Debbie_abrahams for mentioning @METUPUKorg and the work we are trying to do @APPGBC #secondarybreastcancer #breastcancerdebate
— Jo Taylor (@abcdiagnosis) November 12, 2020
We can no longer be pacified by the mere mention of us being raised in a debate. The @APPGBC has been around for five years & hardly anything has changed, especially for those of us with secondaries. We can’t hang around. We are literally dying waiting for things to change.
— Miranda Ashitey (@mizzieashitey) November 12, 2020
Seriously 🤯 and as it turned out the debate was a load of crap. We desperately needed voices like Tracey’s. https://t.co/4hzabzGf2Y
— Angela oliver (@Beatthemedian) November 12, 2020
So much education needed – which @METUPUKorg and other tiny charities trying to do … with some support from bigger orgs but mostly they focus on primary and the ‘it can be beaten’ type narrative! https://t.co/tnK8zMMQzO
— Dr Bex Lewis #IAmThe31 #BusyLivingWithMets (@drbexl) November 12, 2020
Agree. What an absolute waste of time. My head was battered. #BusyLivingWithMets #breastcancerdebate nothing is going to change. No one is coming to save us. We need to fight back to try and save our own lives or at the very least for those who come after. https://t.co/u2dJfmufO8
— Angela oliver (@Beatthemedian) November 12, 2020
A total waste of 90 minutes – I found it insulting to those like Amy whose premature death was caused because her treatment was cancelled. Where was the focus and action?
— Fiona (@LucidWhim) November 12, 2020
#breastcancerdebate https://t.co/nKcVEcsJ63
— Jo Taylor (@abcdiagnosis) November 12, 2020
#breastcancerdebate https://t.co/zr2pYWVdNl
— Jo Taylor (@abcdiagnosis) November 12, 2020
And a reminder of what drives our founder Jo forward – outliving her expected life span, and still fighting for better options for her, for us, and for those that will come after us:
Treatment # 110#every3weeks keeping #BusyLivingWithMets
We need:
– better treatments, surgeries & #drugaccess
-stop rationing drug lines
-lasting policy change@NHSEngland signpost to my #sbcinfographic for awareness of#secondarybreastcancer#COVID19 pic.twitter.com/E9YMAmCsOc
— Jo Taylor (@abcdiagnosis) November 11, 2020fo