The world is a very different place now we are living with Covid! That certainly includes the cancer sector, which has now been set back many years, by lack of investment and urgency, amongst other things. Including NHS staff, we all know that cancer care has been struggling for years to keep up with ever increasing demand. But now it seems like cutting cancer patients adrift, is the ballast that we have cast away to keep the entire service afloat.
Our clinicians are doing their best, within very trying circumstances. But ultimately the offer to people affected by cancer, and their families is just not acceptable. The system is totally broken and no longer fit for purpose! Cancer charities are actively seeking their own ‘life boats’ trying to keep themselves going. There can be no guarantee of what support looks like from this sector going forward. Given the relatively small successes gained from this route over the years, it might not necessarily be a bad thing? Considering also, the amount of money allocated to political lobbying and campaigning by these organisations.
Having seen the incredible pace of dealing with Covid across the world, we know that ‘where there’s a will there is a way.‘ Red tape stripped back to speed up necessary processes. It was so refreshing to see, not just as a patient, but I know the staff were also pleasantly surprised too! So why now, when we have done all these incredible things, do we leave people affected by cancer to fend for themselves?
The facts are that cancer will now directly affect 50% of us in our lifetime, and at least 450 people are dying daily!(Further specific figures in the document below.) It is one of the biggest killers in the world. Why is research being cut back, and what is happening to the backlog of treatment? Today, everybody is well rewarded for lack of progress, how can that be? Pharmaceuticals, politicians, research companies, and giant charities included. Millions of pounds being pumped into it but baring no real relation to progress.
Of course there is some good work, but I suggest much of it is related to the use of technology which has improved dramatically in recent years. The impact of cancer in society cannot be understated both physically and psychologically. The human cost is incredible, in such a supposed ‘forward thinking’ country. Currently, even if we survive our diagnosis, we are discriminated against from employment to banks and at almost any important stage of our life.
So as the world tries to reset itself, it is already clear where people affected by cancer sit in the hierarchy of life. Being left to suffer in silence, as many have no long-term life expectancy! We are left watching on helplessly, as our friends die. Whilst nothing is done to help them live their best possible life. Pre-Covid, everyone was telling us they were doing all they could. Most I’m sure were, but within the system that we now know as not fit for purpose. It is just not good enough!
Whatever was or wasn’t being done the results are clear to see. Cancer patients and families being dropped like the proverbial hot potato. I am not wasting time on the ‘blame game’ but no part of this sector comes out with much credit! I have see the roundabout turning with the same issues coming up year after year. But I can sit back no longer!
Myself and the wonderful Jo Taylor a friend and fellow patient, who many of you will know from her incredible work in the breast cancer community. Jo is the founder of ABC Diagnosis and the wonderful patient advocacy group MetUp UK #BusyLivingWithMets We have decided enough is enough of this rubbish, and want to start a ‘Movement,’ totally independent of any charities etc, where the patient/carer/family voice is heard directly. This is for all cancers, right across the board! No fluffy stuff, but the reality from you all about what is happening. We know things can change because we are seeing it daily, and have been fobbed off for too long. This is a scandal which has to be heard and pressure applied. We have talked for centuries about cancer and it will be centuries more, if we don’t do anything now!
How can you help?? Easily is the answer. We understand that the pressure of cancer itself is enough so don’t want too much from you. Please follow Jo and I on Twitter etc, and let us know the things you are concerned about. Feel free to drop us a message or contact me through this blog. Working together we can ensure all our voices are heard. We don’t have to worry about running a large organisation so can react quickly to what is going on. No more waiting for other organisations and their politics, we will go straight to the top ourselves. If we need to ‘name and shame’ we will, until things improve!
Everybody tells us how powerful the patient voice is. Lets see how strong it is when we speak together!! Please feel free to share this far and wide. Thank you for your support in advance, Chris @christheeagle1 and Jo @abcdiagnosis #PatientsTogether
If by chance you do need any further persuading please read the below document, which will show you how bad things are already becoming.
Hi Chris, I’m glad to hear you and Jo are collaborating in this way. I’ve followed you both on Twitter for a long time and, even though I’m rarely on there any more, I know you each do amazing work via that platform so together you’ll make a great team! I lost my parents to cancer four years apart, it was enough of a nightmare before Covid-19, good luck to you and Jo calling out what’s happening now! Deb X
Thanks so much for your support Deb. Yes Jo and I are quite vocal about things and it seemed logical to team up on this project. Indeed, the cancer issue has become so much more complex since Covid. It seems any progress we have made in recent years is getting lost. We are just trying to encourage people to speak up about the problems they are finding. Very best to you and yours as always, Chris
This. £2.5million of DoH funding to establish and 2 years later it is to be closed due to the bottom falling out of the charity sector. This in an area affected by the Ian Patterson surgical scandal and as more cases are reviewed there will be nowhere for these women to go and talk and rebuild their lives again.
Not only are treatments being delayed the services to support them which are equally important are being withdrawn.
https://m.facebook.com/story.php?story_fbid=3287314224625298&id=100000402575251
Thank you so much for sharing this Denise. I personally believe that what is happening in cancer is yet another scandal. People are dying daily yet all we hear about is cuts! I know professionals are also disgusted at what they are seeing. This is not about money but priorities. People affected by cancer are becoming the sacrifice that Government are willing to pay to finance Covid. We cannot continue to silently stand on the side lines.
This is a really important read. We need to ensure we create a movement which leads to change quickly and creates patient focused processes and access to treatments.
Thank you so much Andy. We cannot continue the way things are going for people affected by cancer.
I’m in – are you? Please follow @christheeagle1 & @abcdiagnosis and make sure our collective voice is heard. As cancer patients we need to speak with one voice so as #PatientsTogether we can have our say & make sure that we all get what we need. With you & Jo all the way on this Chris. I will share, comment & generally shout as much as i can about this. I’ve heard so many stories over recent months from #wombcancer patients not getting the help & support they need from the big charities, makes me so angry.
Thank you for sharing Kaz! Over the years the patient voice has been drowned out by charity giants and politicians, TELLING us what we need! That route has produced little for us or #HCPs Time to speak for ourselves now.
Too busy keeping house.. Things need to change. We’re getting nowhere. All of us should be patient advocates – only way I see us getting on top of this horrible disease. We also need to wise up to the causes. @WCRF_UK the only charity ever doing so.
Welcome aboard Sean! We want to get all the issues out into the open. We all hear stories daily about the wrongs happening to people affected by #cancer. Why should we stay quiet! Lets get the real picture out there!!
I don’t mind saying so.
NHS top up fees. The IFR process.
Patients like myself written off into categories 1-6. Denied scans & stood up for appointments.
Does this happen to private patients?..
I now have an awful lot more #cancer to deal with due to #Covid19UK #NHS
I’d like to see guidelines for cancer keeping up with research . I am currently looking at NG101 of which most has been based on 2009 research. I’m sure this is the same for other cancers too For my own particular breast cancer, invasive lobular the science is evolving all the time and it is a distinct type, not a lump so hard to find and follow up. I have been in touch with NICE who helpfully gave me some guidance but say NHS need to lead..
Incredible we are talking about this in 2020 Darlaine! Have questions been asked? If so who by?
Well done for all the hard work Chris. Always here to support your wonderful cause my dear. Much needed togetherness.
Tu, the important thing is to let people know that they can make a difference! Not waiting for charities or Gov. I want to hear from people living or working in the #cancersector seeing things that should be better. #PatientsTogether #BusyLivingWithMets
Totally agree with you. My subspecialty is skin cancers, you know that. It’s the most difficult part of illness.But let me know if or any support towards your work, u would like me to be involved wth. Every little effort makes a difference #TogetherWeCan #Cancer
I’m very encouraged to see patients collaborate in a positive and constructive way so please count me in. Are we talking UK wide? Living in Scotland I’d like to see us involved as much as possible
Happy to have a ‘Zoom’ Alison, please dm me with ur availability. Thanks, Chris
Fascinating blog but can you tell me what will change by dropping you a note? Health is devolved to all 4 home nations who do wholly different things so unclear how this might work.
The simple answer is that none of the current systems are working Jane. We are not trying to change the course of politics but just to ensure that #Cancer has the priority it deserves. Patients need to be heard and currently they aren’t.
If I can help in any way I am in Jo and Chris. I will be happy to share Laura
@paperdollybird journey. It was hell from diagnosis till laura died and for the family will always be hell without Laura here in our lives where she should be.
Thank you so much Lesley!
I’m getting right behind this. #Covid19UK has made a right mess of my #Cancer treatment. Next week I’ll find out if we can even start to try and get back on track. This is a great initiative Chris.
Thank you Nic! Doing nothing is no longer an alternative. In times of fragmentation we need some unity.
Lots to talk about. I did a few bits of TV/Print at the start of lockdown but the situation seems to have snowballed for everyone over what is in reality such a short time. Will drop a DM this week. Anything I can do, just shout.
Anything I can do to help guys. This is so important #patientstogether
Thank you Matt! It’s all about everyone using their voice and sharing experiences of #cancer during #Covid days. We must ensure that the subject is still on the table by working together #PatientsTogether
A great initiative Chris. The most important voice in the choice is the patients, we need to hear it more. If we can help you in any way we will.
Thanks Mike, we just had to do something! We want many of the same things, so would be good to have a chat. Perhaps u could DM me with ur availabilty? Thx!
Agree that action is needed. How are we going to get our voices heard though? Will we just be shouting loudly from the wilderness with no one listening?
One thing I disagree with though “Given the relatively small successes gained from this route over the years, it might not necessarily be a bad thing?” Maggie’s has been an amazing support mechanism for many of us
No not at all Tony.In recent years the patient voice has been diluted by charities and politicians. But nothing really has changed at all. Now most charities are looking for lifeboats, and politicians are on Covid. We want people to feel comfortable about sharing their own experiences publicly, good or bad. Not always shouting and critical which won’t get us anywhere. NHS is doing some great work but is being used by the Government and blocking a lot of cancer work as we all know. Such a complex situation but we have to get some positive change. Happy to have a chat at some stage?
Let me know what I can do to help.
Thank you Martin. We want to encourage people to share their experiences. Use our voices to speak up for ourselves. Since #Covid, work and investment in #cancer has slowed dramatically. This can’t continue. #PatientsTogether
Please give both @christheeagle1 & @abcdiagnosis a follow and add your voice to the many other cancer patients who are saying “we deserve better”
Thank you Kaz! We are getting a lot of interest in this movement. There is not one answer to this complex problem, but we have to do something! Appreciate your support
Anything i can do to help just ask xx
That’s very kind of you Gill! We just want people to share their experiences of #Cancer during #Covid times. Our knowledge is that things are going backwards quickly, and we want to speak up with evidence. Folded hands #PatientsTogether
Too many are going undiagnosed or having treatment delayed or postponed. Video calls are not the answer – doctors need to see patients to properly gauge their symptoms. We all know early diagnosis is essential but the lessons that were learned when Sir Mike Richards was cancer czar are being forgotten or ignored. So, all we are doing is storing up problems for tomorrow and putting yet more pressure on the NHS. Happy to help however we can.
Thank you so much! We believe the only way things will change is if we get some #unity, particularly by patients. We need a stronger voice to talk about what is really happening in the sector. This won’t wait! #PatientsTogether
I agree, trying to navigate cancer services during the pandemic has been difficult but the amazing staff in the hospital and at the hospice were brilliant, sadly those in power have been useless! So poorly managed and handled!
I agree totally Sam. We all love the #NHS staff who can only do what they are asked. Unfortunately we are all at the mercy of #politicians
Is there anything I can do to help, Chris and Jo? (Excellent article, btw!)
Thanks so much on all counts Callie! With things as they are we just felt we had to do something. Just trying to encourage people to share their #Cancer experiences thru #Covid and use the #PatientsTogether to create some upward pressure. Big love XX
I’m with you on this. Thank you for teaming up and giving cancer sufferers an independent and influential voice. Kick ass!
Thank you Deborah! I can’t pretend we have the magic solution to such a complex issue, but we have to make a start. If patients are so important to all parties why is it not reflected that way in #Covid times?
Covid isn’t just killing people with covid it’s killing people with cancer because the worlds lost the plot and pushed cancer aside. Shame on everyone of them who made that decision.
We feel the same Angela, on everything you have mentioned! There is great work going on but the system is broken at the top unfortunately. Incredible #NHS service doing incredible things daily, made impotent for #cancer by #politics. #PatientsTogether
Thank you @christheeagle1 I’m fed up of cancer patients being pushed aside & the halt on cancer services. Self sabotage at its finest. All services need reinstated urgently & a focus back on treating the disease! Too many have been lost already @NicolaSturgeon @BorisJohnson PLEASE put the same COVID focus onto cancer.
Please help us, its bad enough that we lost our 17yr old daughter to Cancer DSRCT that has NO targeted chemo or cure, even sadder is other teenagers passing away because there’s no cure for DSRCT, we need help in promoting http://justgiving.com/kellyturnerfoundation2017 #doingitforkelly
Thank you for sharing your very sad story Martin. You are doing some incredible work. I would like to know more, to see if I can help anywhere. Please DM me your email. Thx, Chris
We’re with you Chris and Jo. Enough is enough!
Thank you Jo! #PatientsTogether
What can I do to help?
Thank you Michael! With the current situation #charities have become impotent and #politics is focussed on #Covid. #Cancer patients are left waiting. We want people to share their experiences so there is more awareness of this. #PatientsTogether
Totally agree! We have all the brains we need in the amazing NHS. We need the red tape removed for cancer patients urgently.
@NicolaSturgeon I think given the situation it would be nice to get a funding injection especially into the forgotten cancers like Lung Cancer also!
It is so difficult to persuade the Health Service Executive @HSELive @hseNCCP to engage with Patients on advocacy issues. The Patient voice is a valuable but underated asset.
Thank you for sharing this! How can we build services for patients without patients? #PatientsTogether