Help seeking: Why isn’t it as simple as it might sound?

A woman sat on a sofa looking into the distance

Catching cancer early, before it has the chance to grow and spread, greatly increases the chances of it being successfully treated.

For example, more than 9 in 10 diagnosed with bowel cancer at its earliest stage survive their disease for 5 years or more, compared with 1 in 10 when diagnosed at the latest stage.

Cancers can be detected early through routes like screening, which involves testing for certain cancers in people without symptoms.

Alternatively, it can be picked up when someone notices something unusual about their body and speaks to a healthcare professional like a GP, who then refers them on for further testing if cancer is suspected.

This might sound obvious, and you may assume that anyone that notices a symptom of cancer would make an appointment to see a doctor straight away. But in reality, it isn’t quite that straightforward.

According to a new YouGov poll, 50% of UK adults with a possible cancer symptom wait 6 months or more before contacting their GP. And of those surveyed who experienced a ‘red flag’ cancer symptom, like coughing up blood or finding a new or unusual lump, just 48% of people contacted their GP within 6 months of noticing it.

So, if a person notices a potential cancer symptom, why might they not seek help about it?

The answer to that question is something Professor Katriina Whitaker, Lead for Cancer Care in the School of Health Sciences at the University of Surrey, has spent over a decade researching.

At first, I was convinced that if you don’t know the symptoms of cancer, or don’t attribute your symptom to cancer, you won’t seek help, because you don’t think it’s worrying or concerning.

That seems like a really simple, obvious pathway. What my research has shown me is that it’s so much more complicated than that.

– Professor Katriina Whitaker

What are the barriers to help seeking?

In this context, help seeking is defined as someone noticing a sign or symptom that could be related to cancer, or more broadly any health condition, and contacting primary care about it. Primary care may be a GP but can also be other experts like a pharmacist.

In some cases, it can be factors that affect people on an individual level that prevent them from seeking help.

For starters, they might not recognise the symptoms they experience as potential cancer symptoms and therefore not feel the need to seek help.

Alternatively, they might recognise their symptom as a cancer symptom, but fear getting a cancer diagnosis. In these instances, they may intentionally not seek help, which is known as avoidant behaviour.

Professor Katriina Whitaker

“There are a lot of things that influence you that aren’t as simple as ‘knowledge’,” says Whitaker.

“It could be how well people understand health information, or language barriers can be a factor. It might be emotional factors, like fear and avoidance, but you can’t say it’s been just one of these things.

“All of these things, often in combination, can drive people’s decisions to seek or not seek help.”

But reasons why someone may or may not seek help are also more complex than individual factors, which can make overcoming them more difficult.

The survey also revealed that among those who did contact their GP, those from higher socioeconomic groups were more likely to successfully make an appointment (81%), compared to those from lower socioeconomic groups (74%).

This is yet another example of the many health inequalities we see across the UK.

Smoking rates in the UK are around two and a half times higher and obesity rates in England are around 60% higher in more deprived groups than in less deprived groups, both of which contribute to a higher incidence of cancer among deprived groups.

People from more deprived groups are also more likely to be diagnosed with cancer via an emergency route, and are less likely to survive.

“People from lower socioeconomic backgrounds are more likely to face barriers at every stage of cancer care. But the first step of getting to the doctor can seem like the hardest.

“People in these groups might be dealing with multiple illnesses or might live in an area where they’ve seen quite a lot of illness. Perhaps they’re more likely to be exposed to people with cancer that have had a negative experience, which can influence avoidant behaviour.”

Whitaker’s previous research also uncovered, amongst other things, that people from deprived groups may be less assertive about seeking help and less confident at identifying symptoms.

Getting lost in translation

So, if we target groups who are less likely to recognise cancer symptoms where possible, we can reduce the inequalities we currently see in cancer diagnoses, right?

Unfortunately, it isn’t that simple.

Those from a lower socioeconomic background were also found to be less likely to go back to their GP after an appointment if a possible cancer symptom didn’t go away than those from a higher socioeconomic background.

“People can get false reassurance that first time they go to primary care, as they may get given an initial all-clear statement. For some people, they’ll hold on to that more strongly than others.

“And actually, if you believe that at that point you didn’t have cancer and you got the all-clear then you might be less concerned if the symptom continues.”

But this phenomenon might be down to something more complex than false reassurance. Some of Whitaker’s research has revealed that the message the patient takes away from an appointment may not always be the one the doctor intended.

“We interviewed GPs and patients separately after appointments, and one of our major findings was this very subtle misalignment.

“It’s not a disagreement, but there wasn’t concordance between what those two people thought. The GP thought the patient knew what they were doing, and the patient thought that they’d understood the outcome, but actually, that wasn’t the case.”

In one case, a patient even missed their referral appointment because they hadn’t realised their doctor suspected cancer.

The level of support a patient receives at their first touch point with primary care, and at each step of their interaction with the healthcare system, is therefore also crucial.

What can we do about it?

So, we know that not everyone who notices a new symptom will seek help, and we also know that someone’s socioeconomic background can have a big influence on that decision. But what can we do to change that?

“Campaigns promoting symptom awareness and the importance of diagnosing cancer early are great ways to start conversations that lead people or their loved ones to take action,” says Whitaker.

“With these campaigns, we should also try to address some of the emotional barriers to help seeking. We need to address the fatalistic beliefs that cancer is a death sentence, which is still really prevalent even though survival rates are improving.”

However, the answer might not always rest on the shoulders of new, innovative strategies. In her upcoming research, Whitaker hopes to uncover strategies that already exist that can be applied to help seeking.

“We need to stop trying to reinvent the wheel and take stock of what people are doing and, most importantly, what’s working.”

“On an international scale, what are other countries doing to tackle these issues? There must be other things we’ve never heard of, or initiatives we’ve not thought of in that context before.

“We can learn from what’s gone before, rather than starting from scratch.”

But Whitaker also emphasised the need for proper investment in the healthcare workforce, so the system is prepared for more people to seek help.

“We can’t have bottlenecks,” she says. “We want people to go to see a doctor, but we need a really well-resourced system to allow that.”

A complex problem; a complex solution

Catching cancers early is vital if more people are going to be treated successfully. But in order to do that, we need people to seek help when they need it.

“We recognise that it is not easy talking about cancer, but a conversation with your GP could save a life,” says NHS England National Cancer Director Dame Cally Palmer.

“Early diagnosis of cancer is vital to give people the best possible treatment and it dramatically boosts chances of survival.

“We are seeing record cancer checks as public awareness of cancer grows and the NHS is continuing to run ‘Help Us Help You’ campaigns, to encourage people to come forward if they are worried about any signs or symptoms so it is vital that to get checked if you have concerns.”

But while we’ve seen success from public health campaigns, research has shown us that the solution to this complex problem may lie in a multi-pronged approach.

If we can combine public health campaigns like ‘Help Us Help You’, clear and explicit communication between patients and primary care, proper evaluation of existing strategies, and secure investment in the healthcare system, we may be able to overcome the barriers that people face when it comes to seeking help, particularly in more deprived areas.

Jacob

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