Very recently I was the co-author, with the incredible Roger Tempest, of one of the very few totally independent surveys about the current situation around cancer care in this country. Now we are able to publish the results. It shows us what people believe to be the problems, and how we may be able to improve things. You can read and download the full document, but this blog will focus on some of the key points!
“The Covid V Cancer survey ran for 6 weeks during March and April, across the UK. Its purpose is to establish whether there is a problem; if there is a problem, how does it manifest itself; and, if problems exist, what should be done to correct them. The Survey collected respondents’ views on some very straightforward questions.
Has cancer care deteriorated because of the response to Covid-19?
What specific problems have occurred, and how could they be fixed?
What policies does the Government need to change?
What policies does the NHS need to change?
What wider improvements would also make an impact?
The Survey Results show the scale and extent of the problems facing cancer treatment. Of its 36 pages, 24 are, in essence, a listing of what is wrong and what needs to be redressed, under 15 different subheadings. As such, this is probably the most comprehensive sector-wide report on the UK cancer situation that has ever been produced. The most obvious cause of problems is the severe impact that the reaction to covid has had on the whole cancer environment; reinforced by the messaging and the response of the media. This has resulted in a backlog of treatment that is specific to cancer, over and above the general increase in NHS waiting lists as a whole.
However, this Survey goes on to show a much wider range of issues that are endemic to the cancer situation. These include the lack of leadership within the sector; the lack of focus on, and failures with, the patient experience; and a host of problems with the main players, including Government, the NHS, charities and pharma. These are compounded in turn by lack of attention to what should be regarded as generic fundamentals of management.
It is not as if these problems are unknown or hidden – they are in plain sight. The Results Document is simply a collection and presentation of what people already know. This survey, therefore, shows what “something needs to be done” actually is. In so doing it lays bare the extent of the problems and the current ineffectiveness of the response.
The idea of trading Covid vs. Cancer should be anathema to the British people. It goes against one of the core values of the NHS, which is that “We maximise our resources for the benefit of the whole community, and make sure nobody is excluded, discriminated against or left behind.”
Yet ‘excluded’ and ‘left behind’ is what has been happening since the start of the pandemic. The initial and necessary rush to create Nightingale hospitals and ensure that there were enough intensive care beds for the populace, has ossified into an unthinking view that covid-related deaths are more important than those from any other cause. This has caused a decreasing level of care for cancer patients, combined with political messaging from the Government that resulted in some potential patients not coming forward for diagnosis.
The world of cancer care and support is surprisingly fragmented. In the UK the two largest charities attract the most attention, while numerous smaller charities carry on their work in parallel. Each of these focuses on their particular aims, such as nursing or children for example, creating a distributed, “market economy” type of support infrastructure.
Academic researchers are pursuing the subject, and drug companies are in competition with each other to develop treatments, but this is the same for all illnesses. Pharma companies did collaborate much more openly in the quest for a covid-19 vaccine, and it is an interesting question whether they might create better treatments for cancer by collaborating in a similar way, but that is a wider issue. So far there has been no single voice representing patients as a whole, and as yet there is no clearly-defined course of action to remedy the situation.
In order to rectify the situation, we need to step back and look at the whole picture. Detailed instances are evocative, but they cannot be used to set national policy. Furthermore, cancer is not the only serious illness to have been neglected during the pandemic. However, if we deal with cancer it should correct the approach for everyone else. It is not enough just to lobby for change – the Government will only enact change if it is shown how to do so. At present there are too many voices, in the cancer field and beyond; and MPs are overwhelmed. Proponents of cancer care need to produce a concentrated and specific set of instructions for the politicians to follow.
It is not enough just to lobby for change – the Government will only enact change if it is shown how to do so. At present there are too many voices, in the cancer field and beyond; and MPs are overwhelmed. Proponents of cancer care need to produce a concentrated and specific set of instructions for the politicians to follow. We therefore need to pull together as many as possible of the cancer care proponents, and define what actual changes the Government needs to make.
From this survey we wanted to know exactly what the real issues are according to the people that count. This will then be used to talk to Government and media with evidence. Not only do we want to say how unacceptable the current situation is, but what we need to do to improve it. The Survey Results are a fixed point of reference that everyone can use as a basis for action. Follow the progress from here on, and add your input and help, via my site.”
Please feel free to add your own views to this growing debate below.
This is an important piece of work Chris. Can we share it widely?
Thank you for your kind words Dianne. It took us a bit of time to get it done but we needed to know the independent view. Please feel free to share as far and wide as you can.