When I first got into the social-media sector of cancer, Jo Taylor was one of the first people I connected with and we have been friends ever since. She is incredibly passionate about the work she does, despite the fragility of her own health. Like many, it is all about helping others. We both think along similar lines when it comes to cancer so I was delighted that Jo chose to join me in last weeks PatientsTogether campaign. Today I would like to share the incredible work that she and her colleagues do in the breast cancer community.
“The #BusyLivingWithMets campaign started for Breast Cancer Awareness Month back in 2018. While metastatic breast cancer is incurable and eventually terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, many misconceptions and lack of information about this diagnosis persist. A stranger called Elizabeth Richards contacted me and like many other women she knew very little about MBC, yet the more she found out, the more angry and shocked she became that the illness was side-lined. Elizabeth’s view was that as long as metastatic cancer wasn’t mainstream people would not be aware of the limited treatment options available to them. If they knew, they’d demand more.
NICE, NHS, charities there’s so much NOT happening, and it should be. Secondary breast cancer patients need a real voice to push policy and make changes – patients need early diagnosis of mets, better treatments and surgeries. If the government really want the life expectancy to improve and the U.K. world cancer ranking to improve from 17th position (back in 2018), these are the things that are needed to make this happen.
This is where the discussions started and what we found is that there are many inequalities. With the care from primary to secondary breast cancer care (no monetary targets attached to secondary cancer) and additionally you have inequalities with private vs NHS care. As the founder of METUPUK, our advocacy group are looking at the aims and objectives detailed in the graphic below, and we’re committed to turning metastatic (secondary) breast cancer into a chronic disease instead of an incurable, terminal disease. It can happen but we need many changes to get to this point.
METUPUK feel that ALL secondary (metastatic) cancers need to think about applying these aims and objectives to their own. Living with secondary cancer can only improve if we ALL support each other and that means shining a light on what is wrong with the system and finding solutions to these problems. Not just for one disease type but for ALL cancer types. We are ALL in this together. So the #BusyLivingWithMets message is for ALL cancer types. We want other cancer types to join in this campaign. In fact, we want it to be a movement. A movement to make change.
I look at the USA and there is a patient who has lived 20 years with metastatic breast cancer. How has she done that? Well, of course she lives in a country with a different healthcare system, but the fact is:-
– They don’t have strict drug lines – some patients even go back on the same drug in future – cancer is heterogeneous ie it changes so something that DIDN’T originally work occasionally can work again.
– They have genomic and molecular profiling every time they progress. We need this instead of scatter gun approach – that doesn’t save money it wastes NHS money.
– They get radiotherapy like cyber knife and other new radiotherapies. In the UK we have limited access in the NHS – private patients get access.
– Supportive care – in the UK we don’t even have enough Clinical Nurse Specialists to support patients – some patients have never had a CNS in the UK. How do people survive without support?
– They have an excellent clinical trials system. Ours are incomplete and they are not patient friendly.
Our message is simple. With the drug access, the right treatments, radiotherapies, surgeries then we can continue to be #BusyLivingWithMets – many of us living with the disease are testament to this. I have a great Oncologist but if it wasn’t for additional surgeries, radiotherapists etc then I wouldn’t be here and we need our lives to be invested in. Our lives are WORTH investing in.And then we can continue to be #BusyLivingWithMets. Jo, Founder of abcdiagnosis & METUPUK
I would like to thank Jo for sharing her thoughts and experiences with us. In these days of having Covid in our lives it is even more important that us patients work together where possible to keep pressure on for cancer services. There have already been a lot of cuts made with more coming, and a backlog of treatment forming. Unfortunately politics are stopping our NHS from prioritising cancer care as it should be. We need to ensure that changes asap. It literally is a matter of life or death!!
I understand and share Jo’s concerns but I’m not sure that the comparison to USA is relevant. Yes, they have better access but they also have to pay for that. Massive difference in funding. We should have access funded by NHS but I’m not holding my breath!
Hi Tony, I think you would have to check with Jo as to why she made that comparison. I agree with you we should have access funded, but these days just to get Government to even TALK about cancer, feels like progress. So many challenges in the sector now.
I’m great points made by Jo, I think there are definitely things we can learn from the US system, not the insurance based side of the system but the actual medical treatment options that you can access via Clinical trials or just at the doctors discretion. As much as I love the NHS, you have to be a strong self advocate to push for the right treatments and get access to drugs and treatments outside of the strict rules imposed by NICE. It’s often impossible to make progress and the rules on metastasis leave you without any options except getting ready to die.
Hi Nicola, I think that is exactly why Jo talked about what is happening in the US. Many of us owe our lives to the NHS, but I agree with you. You do need to be a very strong advocate for your own care particularly with a complex cancer. The internet has opened the world up to us patients, so we now have knowledge. There are so many wonderful staff and innovation happening in the NHS, but unfortunately it is yet another Government department. It can’t flourish because of incompetent politicians interfering. We must all work together to ensure this situation is improved.
Chris,
If only the perceived elegance of the US healthcare system were so… however, they’re not. Not everyone can get affordable cancer care and the clinical trial system is at best hit or miss. Not everyone gets genetic counseling and if one happens to be a good self advocate they attach to a bigger hospital or a teaching hospital as I have the good fortune of now my second and actually both Stanford and UC Davis in Northern California. But rural care, disparities between people of color and the private VS public healthcare quality is brutally wide. Closing these gaps slowly is costing lives. Yes there’s women who are few and far between who live years with MBC but few is the operative word. Very few. And some physicians think it’s okay to go back to a protocol. Others do not. Some give you the brush off some do not. Very few facilities have supportive care so we roll our own so to speak through charitable organizations and furthermore there’s so much geography to cover that we may not ever have a real count from MBC – ever. Many women are too frightened to go to even get a mammogram and the forces of healthcare run against us via the insurance and big pharma, I nearly came within a hairs breath of dying in February of 2019 because of both – and both own not only an insurance company that are the default Medicare part d (drugs) insurers but the pharmaceutical companies fund the charity that gives us the money if we are lucky enough to get it because the copay on Ibrance at that time was 5400 dollars a month. 2x my social security disability out of which all my copays, meds, drs appointments, scans not to mention little things like the insurance itself – it’s not free – and food, rent, utilities, and transportation- not to mention Medicare doesn’t cover things like wigs but give us big boobs after a mastectomy and woosh, you got it because well…you know. Anyway, I only hope someday globally we shall overcome the various international challenges of shared information, trials, best practices, exchange patients, etc. for now with all my respect and much love – and I do love your blog by the way. It’s awesome.
Hi Ilene,
Thank you so much for joining this discussion and sharing the experiences of our friends across the pond. I was aware through the work I do, that there were vast healthcare challenges in the US, but we hear very little of it through our TV. I speak to both surgeons and patients in the States so am up to speed with things.
I find it incredible that such a powerful country can leave the health of their nation to such an awful ‘system.’ More importantly why have people put up with it so long? With such a toxic combination of increasing poverty and healthcare bills that can only end badly for everyone.
As you know we always complain that our system could always be better, and that is true! But it could certainly be worse. I think if I was living in the US I would be dead and my family bankrupt. As you say this is a global issue but I fear that the Covid19 collaboration will be the end.
Thank you so much for your kind words, and wish you the very best with your own challenges! Big love from London, Chris