Scottish referral guidelines for suspected cancer

Guidelines to support primary care clinicians in identifying patients who are most likely to have cancer and therefore require urgent assessment by a specialist. Equally, they help in identifying patients who are unlikely to have cancer, embedding safety netting as a diagnostic support tool.

1. Introduction

1.1 Background

Although cancer is a common condition with 31,331 new cases being diagnosed in 2016 in Scotland (excluding non-melanoma skin cancers), an individual general practitioner (GP) practice is likely to see only about 35 new cases per annum. The average number of new cases per annum of individual cancer types for a GP practice with a list size of 5,881 patients is shown in Table 1. A GP practice is likely to see on average four or five new cases per annum of people with each of the most common cancers (lung, breast and colorectal) and only approximately one new cancer of the bladder, kidney and oesophagus. An individual GP might see only one new cancer in a child under 15 years in a 35 year career (one every seven or eight years in an average sized GP practice) and yet a GP will see children with symptoms and signs that could conceivably be cancer every single week.

Table 1: Ten most common cancers in Scotland in 2016

Cancer ICD-10 code Total new cases per annum No. cases per 5,881 population per annum
Trachea, bronchus and lung C33-C34 5,045 5.49
Breast C50 4,636 5.04
Colorectal C18-C20 3,700 4.03
Prostate C61 3,167 3.45
Malignant melanoma of skin C43 1,383 1.5
Head and neck C00-C14, C30-C32 1,240 1.35
Non-Hodgkin's lymphoma C82-C85 1,022 1.11
Kidney C64-C65 980 1.07
Bladder C67 870 0.95
Oesophagus C15 858 0.93

The task for the clinician is to differentiate between people whose symptoms may be due to cancer and the much larger number of people with similar symptoms arising from other causes. For certain symptoms, it may be entirely appropriate for a clinician to wait to see if it resolves. Persistence or worsening of the symptom may alert the clinician to the possibility of cancer. Wherever possible these factors have been taken into account in the development of these guidelines.

Cancer remains a national clinical priority for the Scottish Government and NHSScotland. The Scottish Government's Cancer Strategy 'Beating Cancer: Ambition and Action' was launched in March 2016. This strategy and accompanying £100 million commitment, serves as a blueprint for the future of cancer services in Scotland, improving the prevention, detection, diagnosis, treatment and aftercare of those affected by the disease.

Increasing early diagnosis of cancer can reduce premature deaths from cancer and subsequently have a positive effect on overall life expectancy. One of the objectives of the Scottish Government Detect Cancer Early Programme is to work with clinicians and the wider primary care team to promote referral or investigation at the earliest reasonable opportunity for people who may be showing a suspicion of cancer, while making the most efficient use of NHS resources and avoiding an adverse impact on access to services.

1.2 Purpose

The Scottish Referral Guidelines for Suspected Cancer were first published in 2002 and subsequently revised in 2007 and 2014. The recommendations here supersede those in previous guidelines.

The guidelines should help GPs, the wider primary care team, other clinicians, patients and carers to identify those people who are most likely to have cancer and who therefore require urgent assessment by a specialist. Equally, it is hoped that the guidelines will help clinicians to identify people who are unlikely to have cancer and who may appropriately be managed in a primary care setting or who may require non-urgent referral to a specialist.

1.3 Development of the 2014 Guidelines

A multidisciplinary steering group was convened in 2012 to produce a relevant, evidence-based, clinically useful and user-friendly document for clinicians in primary care. The methodology and scope of the guidelines is detailed in Appendix 1.

1.4 Guideline Refresh 2019

The Scottish Primary Care Cancer Group reviewed the 2014 guidelines in 2018 and identified changes that were required as a result of new evidence and guidelines. It was therefore decided to undertake a further update. Healthcare Improvement Scotland identified evidence published since the original guidelines. Of particular note was the publication of NICE guideline NG12 Suspected cancer: recognition and referral (June 2015 updated July 2017) which uses a risk threshold value of 3% positive predictive value of finding cancer for any specific presenting symptoms or signs. As with NICE, we have included exceptions to the 3% PPV threshold, in particular, for children's cancer.

A steering group was established to oversee the update process, under the chairmanship of Dr Peter Hutchison (membership in Appendix 2). Members of the previous tumour specific groups were asked to participate in the revision of the guidelines. Where the previous members were unable to do so, they were asked to recommend specialists to be involved. Membership of the groups was ratified by the steering group. Subgroups were convened for the various cancers where the evidence suggested that recommendations should change. Where the evidence did not support the need for a full update, views were sought from the original members of the individual tumour subgroups. Epidemiological data were updated throughout the guidelines.

A dissemination group (membership in Appendix 3) was established to oversee the implementation of the guidelines.

The updated guidelines were submitted for peer review across clinical, third sector and patient representative networks in Scotland and the steering group considered and responded to each comment received.

1.5 Format of the Guidelines

There is not complete uniformity in the layout of the guidelines as members of specific subgroups advised slightly different formats that reflect the distinct nature of symptoms and patterns of disease. However, for each tumour group the guidelines include information on key points about the pattern of the relevant cancer and guidelines for referral.

1.6 Referral Timelines

The referral timelines used in the guidelines include:

  • urgent suspicion of cancer: Patients referred via the urgent suspected cancer pathway should receive first treatment within 62 days of receipt of referral. These referrals will be prioritised and tracked.
  • emergency referral: to be seen on the same day
  • urgent (not suspected cancer): not tracked or counted in the target for cancer referrals – not used in these guidelines
  • routine: all other referrals, and
  • primary care management

All staff involved in the referral process should be aware of the difference and importance of using these terms. In particular, labelling an urgent referral as being for suspected cancer ensures that these cases can be specifically identified, tracked and audited under the Scottish Government target.

1.7 Referral Pathways

NHS boards have well-established urgent suspicion of cancer referral pathways to facilitate prompt diagnosis of cancer. These pathways function particularly well in cases where symptoms and signs are suspicious of a specific tumour type. However, for people with vague symptoms (such as unexplained weight loss and fatigue) there is potential for delay in reaching a diagnosis. To minimise this risk, direct access to imaging for primary care practitioners enables the differential diagnosis to be narrowed and referral to the appropriate secondary care specialty to be made, thereby reducing delays. The availability of such access to imaging varies across the NHS boards.

1.8 Dissemination of the Guidelines

The guidelines will be widely disseminated in a variety of formats to all clinicians to whom someone may first present with symptoms of possible cancer including GPs, Advanced Nurse Practitioners and other nursing staff, pharmacists, dentists, optometrists, NHS24, paramedics and A&E departments. They will also be brought to the attention of secondary care clinicians of all grades in order to encourage equity of access to investigation and to facilitate interdepartmental referrals.

The current guidelines are available at and a desktop Quick Reference Guide has been developed by the Scottish Primary Care Cancer Group which has been used as the basis for an App for use on mobile devices.

Link to Website:

Link to both the Apple App store:

and to the Android App store:

1.9 Audit and Review of the Guidelines

Audit and monitoring of the guidelines in practice should generate a valuable amount of new information which will be used to revise the guidelines in the future. It is strongly recommended that the Regional Cancer Networks undertake prospective audit of the guidelines.

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