Those of us affected by cancer appreciate the true value of time. Many during covid have also learned it, plus the fragility of our health. One minute all’s well, the next you can be staring into the unknown. Then relying on the system to keep you alive. But the world has made incredible timely progress against the virus. Hopefully we will be living with it like we do with flu. It will be just another another annual vaccination we need to keep us safe.
Having witnessed the pace that healthcare CAN move. I am even more disappointed at the total lack of urgency in the cancer world in post-covid times. I was absolutely shocked to see this story from Breast Cancer Now being heralded as a ‘win!’ It has taken 15 years to get an audit to officially just COUNT the number of people affected by secondary breast cancer. Yes 15 years, OMG!! This should have been happening since 2009, but of course it didn’t! So what happens next?
“We will be working with NHS England as they plan for the audit. Audits are huge projects and it will take time to set up and collect the data. While data from the audit won’t be available immediately, when it is ready, it will give us information like we’ve never seen before on secondary breast cancer – helping to improve the experiences of people living with this disease across treatment, care and support. We are eager to see similar audits implemented in other UK nations and we will continue to call for this as part of our campaigning.”
So when should we expect to find out the official numbers? ” The Healthcare Quality Improvements Partnership (HQIP) are beginning the process of scoping and commissioning the audit. This is a considerable process and can take a year. We would expect results to be published in 2023. The audit will then run for at least 3 years.” Assuming things run to time, which they rarely do, it will be 2025 before we have some meaningful statistics. By that time, many with a secondary breast cancer diagnosis now will be dead! They will be a part of those figures!
If the charity has been campaigning for this for 15 years I really wonder how much was spent in donations on this project? But also from the same charity comes details that deaths are expected to rise in 2022. “Breast cancer is the UK’s most common cancer, with around 55,000 women and 350 men being diagnosed with the disease each year. While more women are surviving the disease than ever before, nearly 11,500 still lose their lives each year in the UK – with survival rates continuing to lag behind other European countries such as Sweden, Portugal, Malta, Germany and France. Almost all deaths from the disease are attributable to the development of metastatic (or ‘secondary’) breast cancer – where the tumour cells spread to other parts of the body – which remains incurable.”
Is this really the best we can do? With increasing death rates across all tumour types our work in the sector based on the above, could best be described as MISERABLE. Here we have their big ambition! “We have a bold vision. That, by 2050,everyone diagnosed with breast cancer will live and live well.” Going at the current pace we will be lucky to see real progress by the year 3000!!
Yet again, as years go by more people are dying. But so many people are being well paid for abject failure. To claim this audit as a win just really sums up a bulk of the cancer sector. Totally toothless and ineffective. How can this timescale be acceptable, for people with cancer. Why is nobody talking about the total inaction of Government?
So few people speak out because they don’t know the reality of dealing with secondary breast cancer. Yet those living with this disease see it as another kick in the teeth of delays, lack of urgency, focus, transparency, as well as accountability and action. How do we have personalized care when we are missing a fundamental part, DATA.
I just wonder if this PR opportunity was to justify having been so quiet during the covid crisis. Daily now, I am seeing excuse after excuse by all parts of the sector as to why nothing is happening. Cancer is not going to suddenly cure itself and we will obviously be facing a major crisis for many years. So many more deaths that could’ve been avoided. Our children will remember we were the generation that accepted more cancer deaths as the cost of dealing with the virus.
This post is not intended to just dig out one charity. I want to highlight how the entire sector has become accepting of unrealistic timescales. No other industry I know would work in this way. Why must we continue to accept this? Cancer is the modern day plague!
I would like to dedicate this post to the wonderful Angela Oliver, an incredible campaigner for this specific issue. Who very sadly is having end of life treatment right now. Yet another person lost to this terrible disease. Whilst we pat ourselves on the back that we can actually now officially count these people?? What a disgrace!
As always these are my personal views based on my own experiences. Please feel free to share your own below.
Yes it is shocking to discover how little info is kept on cancers – I have asked for similar info locally regarding prostate cancer and was so surprised to be told they didn’t have that info.
It truly is shocking Philip. If we don’t do the basics right what chance do we have? It’s not always about throwing more money at it, but working smarter. Many in the sector struggle with the basics. Very complex and uncoordinated means there is so much duplication and waste. None enjoy constructive criticism either!
Sunday wouldn’t be the same with these articles Chris, and dedicating this to Angela is a lovely touch.
I really despair John. @abcdiagnosis @METUPUKorg and so many others are speaking out about this rubbish, trying to be spun as ‘progress.’ Yet more waste of time and money in the name of helping people affected by #Cancer #Unacceptable
It’s shocking.
Sorry you feel that way. By having a ‘pop’ at the charity you also have a ‘pop’ at all the women who willingly gave their time to this campaign.
Definitely Government is responsible Jane, we are both of the same opinion there! But charity in a stronger position to push harder, than individual patients. As we both know so many more will die whilst we start officially counting.
And I’ll be one of those numbers. Please don’t think that’s passed me by. I feel we have a greater chance of success in Scotland than you do.
Indeed Jane. I think you are right about #Scotland Thank you for all the work that you and your colleagues do. Such a challenging issue with so many different views of the problems. One common theme is that time waits for nobody.
These figures and timescales, and the fact that this is how long these “fights” take to secure a “win” – it’s shocking. Thank you for constantly highlighting what’s actually happening. Deb X
I was indeed so shocked when I looked into this Deb! How can we even begin to solve these problems if organisations accept this is being normal? As you say, the timescale is the biggest shocker, remembering that we are working with people affected by cancer. On this basis people who started the project would be dead well before it finished. Like so much in this sector Deb it is totally unacceptable. Big love to you all, Chris
Jane, I don’t think you are right that criticising BCN is the same as taking a pop at the women who campaigned… Many of them have been shocked and surprised at how little impact their hard work seems to have had. And that’s not simply BCN’s fault – it’s a very complex issue.
An absolutely amazing blog Chris (as always). The complete lack of urgency about the 2050 deadline blows my mind. Secondary breast cancer is the biggest killer of women under 50 in the UK. Where is the urgency to stop wonderful women like Angela dying far too young?
I’m just truly shocked Kit that this is considered a success. I feel very little energy from the #Cancer charity giants. But the ‘system’ is rotten to the core. Thank you for your kind words.
Great blog! 9 years since it was mandated… abysmal!
I am personally upset BCN have chosen to run Welsh operations from England. When it came to light (unless I missed it) Wales didnt have a cancer delivery plan – there was no statement from them. Feel left to die…
Thank you Tassia! Unfortunately #Politics is one of the biggest barriers to progress. But whatever way things are done they need to hurry up. Even pre virus we were losing 450 people per day from #Cancer
I honestly think it is healthy to be critical of something you are ‘for’. I’m thankful for a lot of the work charities and ‘some’ government do, but being critical is the only way we can improve anything.
They need to take feedback seriously. We want the same goal at the end!
100% to everything you have said. None of what happens in the #Cancer sector makes any logical sense. As long as we are seen to throw money at it, people think that will bring progress. The opportunity to change is now!!
Hi Tassia, we are committed to seeing an audit covering Wales too, as well as other necessary measures in Wales. Happy to chat if you would like to discuss.. Thanks
Thats great, but tbh with you am just sick of the glacial pace and watching friends die.
I think it is healthy to be angry at the situation and have a rant! Been sick recently so only have the energy to deal with one thing at a time. Would be interested to hear your Welsh plan.
Hi Chris. You’re right. It’s awful. And persistence is needed. Years back when this was agreed it was the government that failed to make the required progress. I’m grateful to @BreastCancerNow for revisiting this.
If only our passion was enough to solve the #Cancer issues. We would have it all wrapped up by now Alison! We are all doing what we can but it doesn’t mean it couldn’t be better/different. Time is not with any of us.
The frustration around the pace of change is frustrating but you can’t deny this is progress. For many of us it is too late. I feel proud to have been part of this regardless how long it’s taken and will continue to support
@BreastCancerNow to make change for us while I can
If most business were run with this kind of apathy and vague targets they would have gone bankrupt 10 times over… I am haunted by @Beatthemedian
Previous tweets begging for compassionate use of drugs. No support from any MP or charity Face with symbols over mouth. Literally we are left to die.
100% to everything you have said. None of what happens in the #Cancer sector makes any logical sense. As long as we are seen to throw money at it, people think that will bring progress. The opportunity to change is now!!
Well said Chris. Surely they want and need change?! The major charities are so ineffective. They should be fighting for patients like Angela. I no longer donate and now only support individuals where I can make a difference because they have to self fund
Thank you Gill. Things are changing rapidly and we can all see that #Cancer has been totally ignored by the Government. I’m really struggling to see what role the giants will play going forward, if they are frightened to speak out!
Mia, I understand that all the individuals at BCN work incredibly hard and that you are all very lovely people, but those of us living with metastatic disease have been repeatedly failed by the organisation. So many of my friends campaigned for BCN and are no longer here
Thanks Emma. Sorry to hear that’s how you feel, I would never want any to feel that way. We are all absolutely committed to seeing improvements in treatments and support for people with secondary breast cancer.
We have prioritised drug approvals as part of our work and after 10 years with no drugs approved for routine use on NHS, we have seen in the last 5 years there has been a real turn about. That’s not to say everything is perfect, we know it’s not and it is because there is so much more to do (in many areas) that we are all so committed. We’re a charity though and we can call for change but decisions don’t sit with us. Happy to chat if you would like to do so, just DM me and we can find a time. Take care
Bonnie, Julie, Jane, and many many others all expected this information to have been collected and organised already. This “audit” should have been done years ago. In the 7 years I have been living with this disease BCN has done so little to support those of us with mets…
This is why multiple alternative breast cancer charities are springing up all over the place all the time – because things aren’t changing quickly enough and women are still dying! 31 every single day. Many of them in their 30s with young families. It is not OK.
So regardless of how hard everyone works at BCN and how nice you all are, I don’t think we can just sit back and accept how things are. We need change. Chris is absolutely right to make all these points.
Thank you Emma. I talk in this way to be constructive. The world is changing fast and the old ways of working are not cutting it. Charity giants will need to shape up too. Imagine accepting this for the next 25 years?
Imagine having lived with it for 10 years as some women already have…? The issues were the same when I was diagnosed with mets in 2015. That’s how effective BCN has been
Hi Chris, the audit will do a lot more than count people- you can look at the information that the audit on older people with breast cancer produces to get a sense of this, which is available online. We called for an audit specifically as part of our current campaign.
Of course we would have liked more data earlier, but it didn’t happen and so this commitment is still huge progress. It’s only in the last 18 months or so that we have called for an audit, which takes us much further than numbers of people alone.
Hi Mia. I’m sure it will, but let’s be honest, the timescale is quite shocking. Of course everyone is giving everything but the outcome is still unacceptable.
Agree Emma; this re: importance of density, dates back to 2014. I formed Breast Density Matters UK (in France!) to raise awareness of breast density and implications on health. We are all trying to make a difference, bring about change & save lives.
https://breastcancernow.org/about-us/media/press-releases/over-700000-women-in-uk-are-living-hidden-breast-cancer-risk
Really wish I hadn’t seen this Cheryl. Disappointed but relieved face Hearing from so many people about these issues! What are we achieving with all this hard work and ££££s?
In terms of breast screening, UK are working towards a risk stratified programme, this takes time & in the meantime we could be doing so much more #education #cancer #FindItEarly
I can’t understand this – and the timescales. Does this mean there’s never been an audit before for metastatic breast cancer @BCNowPress? You ask some very valid questions Chris. Very important questions for the #AdvancedBreastCancer community who feel so left behind
Never been an audit BUT the mandate was MANDATORY data collection from 2012 & there have been numerous reports from BCCare/BCNow to highlight this isn’t happening but no one has addressed it with any action or accountability http://ncin.org.uk/view?rid=1043 I’ve highlighted this for yrs
@malefitness Thx for sharing this post from @christheeagle1 (btw, Chris, my mum is from Croydon. I’m in Austin, TX now) So much of this post is spot on. Time is a gift. Tomorrows matter. Research must move faster. This line about @Beatthemedian caught my eye and heart.
Thanks so much for your kind words Gary. I really wish I didn’t have to write posts like this but there is so much wrong with all aspects of the #Cancer sector. Time is certainly of the essence! My best to all in #Austin
I’ve been diagnosed with metastatic BC during the Covid pandemic. Like every one receiving this diagnosis I’m scared, so scared, I really don’t want to die and I certainly don’t feel the least bit brave or accepting that my medical story and death will help with research for those following. This disease needs to move from deadly to chronic now! They’ve achieved this with covid we see facts and figures coming from every where why is it such a challenge to get the data for secondary bc I don’t understand why funding isn’t prioritised – 31 people every day is too much heartbreak, too much opportunity of life lost. Covid is sadly taking 11 lives each day currently not good of course but still full speed ahead on research etc I hope our scientists and governments, pharmaceutical companies learn from this and apply the same urgency to secondary bc
Hi Michelle. Very sorry to hear about your diagnosis, during these challenging times. I also understand what you say about not wanting to die and why this disease should move to chronic. Like so many things about cancer across the board, there is so little urgency. We have accepted the dreadful deaths numbers across the sector For many years it has been officially stated at 450 per day. Of course there is no hierarchy in death numbers but there will always be more people dying of cancer than will die of covid.
It is a national disgrace that this continues, and even more shocking that it takes us so long to officially count the number of people with MBC. Unfortunately there are so many people earning a fortune without creating progress in the cancer field. Progress will only be created when us patients make it happen, which of course is difficult.
Of course we need the collaboration and urgency that we have seen recently. Unfortunately I feel that was a once in a lifetime action.
My very best to you and thank you for taking the time to share your own thoughts and experiences.