So I have been writing and talking about cancer professionally for over 10 years. As the world is changing so dramatically, it felt like a good time to review what my experience is showing me. In honesty I can see nothing but a global disaster. There are many times that I feel my time has been totally wasted. My goal has always been solely to improve the lives of people affected by cancer. It’s extremely difficult to look at just one issue, as everything is interconnected. But if you don’t, it is too easy to get side tracked, and lose your entire focus.
Until covid arrived, I really felt we were making some progress. Very slow admittedly, but forward at least! Now we are rapidly in decline. Relatively little focus on cancer. With world politics and the economy, now taking centre stage. We are ‘fighting fires’ daily, with no sign of any long-term strategy for the basics of society. Including healthcare. The picture I see here in the UK, is mirrored, if not worse in other similar economies. I never thought I would see the day when cancer was not one of the main priorities in the world. A disease that will affect 50% of us directly. Thirty million people here alone.
We currently have the longest waiting lists ever. Less and less money going into research. With ineffective leadership, it feels like sadly, many are just going through the motions. Seemingly accepting that at least 450 people will die daily. Greedy charities continuing to plead for money from vulnerable people. Giant pharma dictating where the money is spent. Not necessarily where it’s needed, but where the biggest gains might be. Why not, it is a business after all. Everyone TALKING about equality but in reality we see quite the reverse.
Most patients with little financial resource, will still only receive the basics of cancer care. Whilst others may be able to find other options outside the NHS etc. Very little coordination in the sector at all, whether nationally or internationally. Suiting everyone of course, except us patients. The industry is worth billions annually, but what progress are we seeing for that investment? Yes we have some improved treatments, but survival rates for many cancers are still well behind equivalent countries.
Technology has made record advancements in this time. But the NHS has been very slow to engage. Unless the culture changes, it will always be that way. My feeling is that the pull and financial rewards of independent agendas, is still stronger than making real change. Covid showed us what we can really do when we focus on a global challenge! In my opinion we have accepted expensive failure in this sector for far too long. Being manipulated by particularly ‘pharmaceuticals.’ My belief is also that there is widespread corruption throughout .
Despite the efforts of so many, including my own. We are in a worse place than 10 years ago. It is a lottery if you get the best available treatment at the right time. Many peripheral services are being removed so treatment for side-effects will be more difficult to find. On the positive side, ‘raising awareness’ of cancer has increased dramatically. Ironically creating longer waiting lists for tests and treatment!
So where to we start to put things back on track? For something as important as this I believe we need a Minister for cancer. Somebody, who in an ideal world would take responsibility for progress. (Like most of you, I also have a lack of faith in politicians, but can see no alternative here.) We currently have Government puppets in the NHS who are totally ineffective. This is in line with all the ‘playing to the crowd’ that the rest of the sector is also doing. Are we really looking to find cures? Should we be looking more at prevention, or less treatment for certain individuals? Whatever the answer, more people will be dying if we don’t make some choices quickly.
The system we have today is only serving the people working in it. There is still no real sign of the patient being at the heart of everything. Certainly not whilst there are huge financial rewards for failure. So having just completed this piece, our Government now looks like it will collapse as senior Ministers resign. Yet more chaos to deal with, pushing cancer even further back. Hard to see where we go from here?
As always these are my personal opinions based on experience. Please feel free to share your own below.
Chris, you have spelled out the situation so clearly that anyone going through cancer would know these words so well. I do not understand why there has been little done for cancer patients apart from the obvious of a two tiered system which has already happened sadly. Is it the plan by Government to run cancer care down to a bare minimum forcing people to spend their last savings on treatment just to survive? There has been no sign of interest for years and I can see nobody taking responsibility unless we have an appointed minister as you say, responsible for overseeing a workable cancer care package. One that is not left to charities to talk a lot about it but do nothing constructive. Like you Chris, I have been researching, campaigning since my diagnosis over 25 year now and see very little change. In fact there is evidence of some backward moves – waiting lists for ‘diagnosis to treatment’ times are definitely longer now. You could probably find more backward steps to measure if you were to interrogate the system’s data. And accountability, as you have mentioned in your previous blogs, is apparently non-existent. I think Covid will be used as an excuse for a very long time but this government has had a reasonable time prior to Covid to prove it is serious about living well with cancer and nothing has been done. I call for accountability and transparency. Any charity/organisation/government department who claims to be supporting cancer care, I would love to hear from you and for you to produce evidence of your outcomes to date. Dr Dianne Dorling
Hi Dianne,
Thanks so much for sharing your own thoughts and experiences. Ironically they are very similar to mine, but from the professional side of the fence. I have a very unique position as speaking to patients and professionals through my work I am also a patient with in the system. In many cases I experience personally many of the things I’m told about that are happening.
Like you also, I do wonder what all my work has achieved. My positivity comes from all the communications I receive from people I have been able to help, through my own experiences.
I have had comments from people that don’t agree that cancer care is in decline, but they are in the minority. I see it daily myself.
There are times I have thought about doing only commercial work but I feel I have come too far to stop now. Who knows what tomorrow can bring?
Delighted that we are both on the same path and thank you so much for your wonderful support, Chris XXX
Need to reinstate the NHS Quality Surveillance Visits or we’ll definitely be back to the days of a postcode lottery when it comes to the treatment, care & support of patients!
We need more than ever to be sharing good practice & identifying risks / concerns & publishing this
It seems that we are already at the postcode lottery stage for many treatments. Couldn’t agree more about the sharing etc. In my opinion we must do so much better with working conditions and recruitment in the #NHS
Speaking from personal experience of 2 family members with cancer in different parts if the country, and my background in cancer nursing…already very much a postcode lottery
I’m seeing that myself too Karen from similar experiences to you. Friends recently diagnosed and speaking to patients and professionals daily. It seems healthcare is no longer a priority for any politician!
I would agree, Quality surveillance has been so watered down over the last few years, it used to be a way to ensure consistency and encourage innovation.
Personally I feel we are in a better place having tracked it for eight years, that’s my opinion based on experience Chris. Of course there is still huge inequality & much to do, but we are so very grateful for progress, real progress.
Thanks for sharing your opinion Colin. We all see little bits of the bigger problem. Of course in that time there must have been things that have progressed, I do hope they have, but I don’t feel it speaking to people daily.
As a cancer nurse this is a difficult read, services trying their best and some doing better than others but with no ring-fenced substantive increase in cancer funding within the NHS and an ageing workforce this is going to be tricky to solve
That was the conclusion I came to Alison. I have felt very frustrated for a long time. I’m struggling to see enough positives from 10 years of time and money spent
Agree Alison – a difficult read also not helped by national communications that individuals may have to choose between #fairpay for nurses & investment for cancer services. It’s not either / or – without a workforce cancer services won’t operate
Thanks Chris – agree with lots of this – I think one of the things I find hardest to see is the failure to embrace an integrative approach – still many people being diagnosed and not helped to look at stuff like exercise – yet we know in some cancers it can cut the return of cancer by 40% – if that was a tablet it would surely be thrown at us – other countries like Belgium whip anyone newly diagnosed straight to a gym for pre- and re-habilitation assessment. Some small improvements here but some areas have gone backwards since Covid….so strange when such an approach must be more than cost-effective?
Hi Philip,
Thanks so much for joining the discussion. Since my own diagnosis in 2007 I have made it my quest to use my business skills to try and improve the sector. All thos points you make above are of course incredible logical to us. But unfortunately the culture within the sector as a whole is frightened of change and collaboration. Except of course big pharma, who are ultimately in control of what happens with cancer.
The NHS is now only firefighting and the corporate charities are fighting for funds. The patients and families are almost to the bottom now.
Most in the sector are earning incredible money for failure, as everything stays the same. The more treatments we give the more long term damage we can be doing. Therefore the need for more drugs, and so the cycle continues. Personally I see a massive resistance to change, which I believe is an acceptance of so many deaths is the price we must pay.
Of course there is so much we could do better without having to spend fortunes. But there has to be a will and their just isn’t! Of course it would make economic sense. But NHS only looks at the first cost and not the entire cost.
Very best, Chris