This week’s posts have tried to flesh out the nature of the delivery problems that exist when the NHS in Whitehall wants to improve outcomes in the field. I have suggested that it is wrong to assume that there are existing delivery mechanisms that link rooms in Whitehall with NHS practice – carrying out 1 million consultations every 36 hours. If we want something different to happen the chain needs to reach all the way to the business end of the NHS. If practice doesn’t change promises won’t matter much.
Today I want to consider what a delivery chain for practices that would have an impact on cancer survival rates might look like. Interestingly this does not involve prevention. We are talking here about people who will get cancer and survive 5 years from the time of diagnosis. People who don’t get cancer because of prevention don’t enter the equation of improving survival rates.
This is important because English survival rates are lower than most of the rest of Europe.
There are three main stages in the process of improving survival rates,
Over the past 20 years the NHS has enormously improved results in the third of these areas. When I worked in Whitehall I got to know the cancer Tsar Mike Richards and, over his tenure, he met with with thousands of cancer clinicians and succeeded in having and winning arguments with them about how they might improve care for cancer patients.
In 2018 there is of course more to do, but the average quality of care – not just the best – is far better than it was 20 years ago. Of course there are real problems in acquiring and retaining staff, which means these advances will fall back, but if we were, over the next 10 years, to concentrate on one of these three areas to have the biggest impact on improving survival rates it wouldn’t be treatment. In terms of improving survival rates, the easier bits in treatment have already been made, there are much greater improvements to be made in the other two areas.
Making that statement and, in delivery terms, achieving it are two very different things. The public naturally think that the most important aspect of improving survival rates is improving treatment. Of the three areas affecting improvement in survival rates the NHS works much more on treatment than on presentation and diagnosis. The expectation of both NHS and the public is that all the improvements in survival rates will come from treatment. However, if you really want to have more people survive you would spend your time and effort improving the delivery chain in the other two areas. And, more to the point, you would be very clear with the public about that.
In the delivery chain of Improving survival rates late presentation and late diagnosis involve the public as much as the NHS. If all the public hear is the mantra that better treatment is the key to improvement they will come to believe that their part in presenting with their possible cancers earlier is not as important. And they would be wrong.
A good start in looking at late presentation and diagnosis was made last week when the excellent Mike Richards (see above) was appointed to review NHS screening programmes and make them more effective. At the moment each screening programme is aimed at a specific gender/age demographic. Within these specific populations, the programmes are meant to be universal, in that all members of that population group are meant to go through screening.
Mike will recognise that the application of the programmes are, within their populations, far from universal with some groups of people much more likely to be screened than others. He will recognise that people who are not screened will be diagnosed later than others.
So our first priority must be to have a universal presentation to screening. The NHS can do something about that but mainly it will involve much better relationships with civil society organisations. Most screening involves an older demographic. Coincidentally so do most people who are involved in organised faith organisations. If faith organisations discussed whether those who are a part of their world have been screened, it would have an impact on numbers. A discussion of how faith can help beat cancer through early presentation would be useful not just for improving the numbers for screening but for all sorts of presentation.
Of the two stages I mentioned earlier, presenting the cancer and having it diagnosed, the second mainly involves internal NHS relationships. It is the first where nearly all of the decision-making takes place outside of the NHS within civil society.
If more people felt it was OK to go to their GP with their pains and lumps and talk about their fears earlier, more people would live.
We have some good data here. A few weeks ago the proportion of people who had their cancer diagnosed at A and E was published, broken down by CCG. This is significant because diagnosis by A and E is a good marker for late presentation. I went to A and E because I felt very ill and I was diagnosed with a cancer that I had not been diagnosed in primary care.
This data showed very considerable variation between CCGs, with some having a much higher % of A and E diagnoses than others. CCGs would say that this is down to local demographics. One of the first outcomes of looking at a delivery chain would be to use the fact that there will be some CCGs with the same demographic but with different rates. Pair a good one with a not so good one. Walk through what happens with presentation in both. Talk to 1000 people who had their cancer diagnosed at A and E about their experiences. Why weren’t they diagnosed by primary care?
There are a few things that the NHS can do about this. For example there is some evidence that people in England with long term pains do not go to the doctor because they genuinely don’t want to bother the doctor. Obviously this worry about ‘bothering the busy doctor’ is not spread evenly throughout the population. But given that some present late because of it, there is an impact on their life chances.
When some people hear that doctors are very busy they go to the surgery less often and for some that leads to late presentation. This is a tricky sentence to write but if the NHS stopped going on about their doctors being so busy cancer survival rates would improve. More people would bother the doctor with their lump or their pain.
Not going to see the doctor with a lump or a pain is something that is frequently outside the NHS. There are civil society organisations who have a direct interest in this process. Cancer charities such as Macmillan play a major role here – through events such as coffee mornings – where people can talk more with other members of society about earlier presentation.
Whilst there are few voluntary organisations that are directly concerned with early presentation, civil society is a trusted space where this could be better discussed as a part of an anti-cancer campaign. Whilst this would not be a major part of many organisations’ purpose, one could imagine a county voluntary organisation having a week where this was discussed with the NHS. My main point here is that the NHS will not have much idea (beyond advertising campaigns) of how to deal with late presentation whereas local civil society organisations are better placed.
The delivery chain for improving cancer survival rates involves far more organisations than the NHS. Any activity designed to improve those rates will need to include them.