Cancer care in England and Scotland – what do patients really think?

We’ve blogged a lot recently about the pressures the NHS is facing, and the need for more investment in cancer services.

But headlines, targets and statistics don’t always give the full picture. And they don’t always represent what’s going on every day on clinics, wards and surgeries.

We’ve also recently taken a look at the multitude of ways cancer can affect people – and how no two experiences are the same.

So how do these two things affect each other? Does the undoubted pressure on the healthcare system affect how patients rate their care?

Earlier this week, the results of the Cancer Patient Experience Survey were published, both for England and, for the first time, for Scotland. And they give us a valuable and fascinating snapshot of how real patients feel about the care they’ve had.

And thankfully, overall, the majority of patients are very positive: for example, when asked to rate their care on a scale of zero to ten, the average score from patients in England was 8.7.

And in both nations, 94% of patients rated their care as at least 7 out of 10.

However, as we’ll see below, not all the results were positive. There’s still clearly work to be done: both to make sure patients are diagnosed early, and that they’re given all the right information and support. And disappointingly, we’ve seen a decrease in how many patients say they’ve been offered the chance to take part in cancer research.

But ultimately, while the survey paints a picture of a health service under pressure, it’s clearly one made up of incredible staff who go the extra mile every single day to make things a little bit easier for the patients they’re caring for. Let’s take a detailed look at the results.

Diagnosing cancer swiftly

One of the reasons this survey is so important is that it gives us an insight into how patients are diagnosed – vital, because in many cases the sooner a patient is diagnosed, the more likely treatment is to be successful.

I was examined by a lovely GP at my surgery who referred me for various tests. My womb cancer was diagnosed at the earliest stage, which was good news. I had surgery which thankfully got rid of all the cancer so I didn’t need any further treatment – I was very lucky.

– Kath

So it’s encouraging that, according to the survey, more than half of patients (58%) say they only had to see their GP once or twice before being referred.

And on the other hand, across both nations, nearly a tenth of patients (7%) saw their GP at least five times before they were referred.

Now, as we’ve said before, some cancers are notoriously hard to diagnose, and have symptoms that often mimic other conditions.

Nevertheless, this is a disappointing figure, and one we’re hoping to see fall, particularly in England where new NICE guidelines were recently introduced to help GPs refer patients for tests more rapidly.

And it’s important to remember that this doesn’t give a complete picture – unfortunately, some patients become too unwell to complete the survey quite soon after they are diagnosed, which means we don’t know as much about their experience.

Every patient a research patient?

Another priority for us is, of course, research: past surveys have told us that while 85% of patients say they have seen information about research in the hospital, not very many of them have a discussion about research with a health professional.

Unfortunately, the latest results show that only 27% of patients in England say they had a discussion about research with a health professional.

This is even worse in Scotland – with only 22% of patients reporting that they had discussed research opportunities.

But here’s an anomaly: this year’s results show that, in both nations, only a small proportion of patients – 5% in England and 4% in Scotland – who said they hadn’t been asked about research, say they’d have liked to have been.

We’re surprised by this: in previous surveys this proportion been as high as 54%. And the results from 2012 tell us that 95% of patients who were asked about research were glad that they were.

But the way the question was asked this year is very different from previous years, which might be why these results seem so out of kilter. Nevertheless, this seems like a very big change, so we’ll be keeping a keen eye on this in future years – it’s vital that as many patients as possible have the opportunity to take part in research if we’re to meet our ambition of seeing three in four patients surviving cancer.

But whatever the results are, the overall picture is positive: although 22 and 28 per cent feels quite low, the UK has one of the highest levels of patient participation in research in the world.

And of course, at Cancer Research UK, we provide information for patients about current clinical trials open in the UK via our Clinical Trials Database.

The bigger picture

These surveys also give us an interesting insight into how the NHS is coping in general. In England, just two-thirds (66%) of patients said there were ‘always’ or ‘nearly always’ enough nurses to care for them in hospital. And just 52% said that, during their hospital visit, they ‘definitely’ found someone to talk to about their worries and fears.

This is upsetting, but not surprising – a recent report by the National Audit Office estimated that the NHS is short of around 50,000 clinical staff.

But again, although staff are stretched, they’re clearly still working incredibly hard to make sure that patients don’t feel that – in both surveys, 87% felt that they were always treated with dignity and respect, and most had confidence and trust in all of the nurses treating them (77% in England and 72% in Scotland).

A journey through cancer is tough but I always feel that I have a kind, supportive network of NHS staff on my side

– Nicola

But there seems to be a lot of room for improvement in how patients are supported outside of hospital. In both nations, just 54% reported getting enough care and support from health and social services during their treatment, and only 45% reported receiving enough care and support after their treatment had ended.

Inequalities and variation

These surveys gives us a huge amount of information – far more than can be summarised in this blog post. But the overall trend is clear: although we still have some way to go, and things aren’t perfect, the NHS is doing pretty well.

But as well as highlighting these overall trends, the surveys allow us to look at more subtle trends: how people’s experience of care can vary based on their age, gender, ethnicity, how well off they are and the type of cancer they have.

And there’s certainly variation – for example, in Scotland, people from more deprived backgrounds were less likely to have been offered the chance to participate in research.

Past surveys in England have also shown that people from certain groups are less likely to have good experiences: such as people from ethnic minority groups.

Having this level of detail is incredibly important: it shines a light on inequalities like this and galvanises action. And after seeing these patterns, NHS England is now planning further work focused on improving their experience in particular.

And in future, the survey will also be extended to cancer patients under the age of sixteen – which is great news, as past surveys have also shown that young people’s experience tends to be worse.

What’s next?

At Cancer Research UK we’re working hard to improve patient’s experience of treatment and care, as are our colleagues at many other cancer charities. This includes funding research into better, kinder treatments with fewer side-effects, helping get better information and support to patients, and influencing national policy to make sure patient experience is considered a priority.

We’re also working to involve patients in more of our work, so that we can be sure that we’re focusing our efforts in the right places.

But the main responsibility for making sure patients with cancer rate their care positively lies with the NHS itself – and that’s why, as well as the positive headline figures in this report, we were pleased to see NHS England’s recent plan to make cancer care world-class.

Patient experience was also a focus of both the Scottish cancer strategy, published in March, and last summer’s cancer strategy for England – which also had a specific recommendation about continuing this survey, aims to put patient experience on an equal footing with patient outcomes. We’re looking forward to working with healthcare bodies across the UK to make sure that this happens in all four nations.

We’re also expecting more results from both surveys to come out early next month: broken down to local levels in England, and more detailed results for Scotland. These findings will be hugely important: for us, for national decision-makers and for the people planning services and giving care.

– Rose Gray is a policy adviser at Cancer Research UK