How we helped shape Scotland’s cancer referral guidelines

A vital part of beating cancer is turning the things we discover about the disease into tools with a real-world impact. That’s where Cancer Research UK’s strategic evidence team come in. Over the past two years, we’ve been working with NHS Scotland to review and update the country’s cancer referral guidelines, which help GPs spot and act on signs and symptoms of cancer.  

Now the updated guidelines have been published, we’re highlighting our role in the process, and the importance of giving primary care teams the up-to-date information they need to spot cancer earlier, when there are more treatment options and better outcomes.  

England, Wales and Northern Ireland have different cancer referral guidelines to Scotland, so the publication of Scottish guidelines is a chance to share learnings that could improve how cancer is diagnosed across the entire UK, and even internationally. Relevant organisations need to adopt processes that support timely updates to their guidelines, so they can ensure the latest evidence is guiding how to offer the optimal management for people at risk of cancer.

What are cancer referral guidelines?

National cancer referral guidelines outline signs and symptoms that can indicate cancer in people presenting to primary care. Healthcare professionals can use them to decide what tests people might need, or if they should be referred to a specialist for further investigations.  

Cancer referral guidelines are particularly important for GPs, who are usually the first healthcare professionals that people talk to about their symptoms. The challenge for GPs is that most signs and symptoms can also indicate many other diseases, as well as cancer. There are also only a few tests that GPs can use that support the assessment of cancer risk. For many symptoms, there is either no test, or the available test isn’t very accurate for predicting cancer. 

Recognising cancer in primary care can be challenging as cancers often present with symptoms commonly seen in day-to-day practice. In the majority of cases cancer will not be the cause, so guidelines are important to highlight to referrers what symptoms and symptom combinations are most likely to be due to cancer and therefore warrant an urgent suspicion of cancer referral.

Lorna Porteous, Vice Chair of the 2024 SRG Review, GP Lead for Cancer and Palliative Care in NHS Lothian.

To help overcome some of these issues, organisations across the UK developed national cancer referral guidelines with the support of clinicians and researchers to help GPs make the best decisions with the available evidence. As well as outlining signs and symptoms that can indicate cancer, some guidelines set thresholds for urgent cancer referral using research on the probability that a person with a particular symptom, or combination of symptoms, has cancer. A vital part of updating guidelines is ensuring these thresholds balance the estimated cost of an intervention and its expected benefit.  

Up-to-date referral guidelines can support the timely recognition and referral of people with suspected cancer. When they’re used effectively, they can ensure people are diagnosed faster and potentially with earlier stage cancer, leading to better outcomes.

How we supported the Scottish Referral Guidelines update  

The Scottish Referral Guidelines for Suspected Cancer (SRG) were last updated in 2019. In June 2023, NHS Scotland’s Cancer Strategy committed to updating the SRG, recognising the importance of up-to-date national guidance. The project took place over the next two years and involved a broad multidisciplinary team. We supported the work by carrying out research and analysis to ensure the updated guidelines reflect the latest evidence and data. 

In updating the Scottish Referral Guidelines, it was agreed that changes should be based on clinical consensus and the most up-to-date evidence available. Cancer Research UK Strategic Evidence team’s expertise ensured the guidelines were based on high-quality, triangulated evidence and insights from a range of sources. Their contribution was invaluable in shaping the referral criteria of the Guidelines.

Philip Hodkinson, Chair of the 2024 SRG Review, Consultant Physician, National Clinical Lead for Earlier Cancer Diagnosis.

The SRG provide 13 sets of recommendations across groups of cancer sites. We conducted 16 literature reviews in total, which cut across these sites, as well as additional reviews on broader topics such as non-specific symptoms. Our aim was to understand new evidence and data published since 2015 that might inform changes to the current guidelines. As such, we analysed the literature to spot if there were additional symptoms, investigations or changes in individuals’ risk that need to be considered and included in the updated guidance. 

We presented our findings at 14 multi-disciplinary workshops, where they supported initial decisions about potential guideline changes for each cancer site.  

By embedding the latest evidence into clinical practice, we’ve helped drive changes that can improve patient outcomes and experiences. For example, in one workshop, our evidence on the risk of cancer in certain patients presenting with non-specific symptoms, such as weight loss or fatigue, informed a discussion that led to valuable new set of recommendations being added to the guidelines. As people with non-specific symptoms may experience longer times to diagnosis due to their symptoms overlapping with many other conditions, these changes could improve outcomes by encouraging more rapid referral and diagnosis.  

Literature reviews weren’t the only way we supported this process. We also used our expertise and extensive relationships with relevant stakeholders to feed in evidence and insights to support the update. For example, we brought together a range of findings from our regular survey programmes, a bespoke survey of Scottish GPs and insights from primary care researchers. Additionally, we commissioned an external research agency to conduct qualitative research investigating factors impacting guideline use. These findings were fed directly to the guideline update team to ensure the updated guidelines were designed in a way that supported their use. Since then, we’ve continued to support by developing education materials to help professionals use the guidelines and by promoting the guidelines via our channels.   

In the refreshed Guidelines, we utilised an evidence-based approach to the clinical features and tests that are more predictive of cancer. The evidence reviews contributed by Cancer Research UK formed the backbone of our Peer Review Sessions in the development of the new Guidelines and suggested symptoms and tests to consider including in the guidelines.

Nicola Barnstaple, National Associate Director, Cancer Improvement & Earlier Diagnosis, Centre for Sustainable Delivery.

How can we keep making referral guidelines better? 

The work in Scotland is a great example of how a multidisciplinary approach produces high-quality national guidelines.  

To make sure the guidelines continue to make the biggest impact for people affected by cancer, we also need to raise awareness and support their use. Research can help with that by demonstrating the important role guidelines play, either by evaluating the specific impact of guideline updates or helping us understand how primary care activity affects patient outcomes more broadly. 

With primary care services facing significant demand, the health system also needs to give primary care professionals the time, resources and training to embed the guidelines into their clinical practice. Our Primary Care Cancer Survey (2025) found that only 63% of GPs think there is enough training available on selecting the most appropriate referral pathway for patients with suspected cancer symptoms. Additionally, more funding and support for primary care could streamline use of guidelines, as could improvements to digital and data infrastructure.    

We think this work in Scotland could catalyse important changes across the rest of the UK. With regular, evidence-driven updates and primary care support, cancer referral guidelines can help us diagnose patients faster and get them the vital treatment they need sooner, helping people across the UK live longer, better lives.  

If you or your organisations are interested in hearing more about the work we conducted with NHS Scotland and how we could potentially support similar initiatives, please get in touch at seinbox@cancer.org.uk.