Scottish referral guidelines for suspected cancer

2. Common issues for cancer referrals

2.1 Patient Issues

2.1.1 Patients' and carers' needs

All healthcare professionals should be sensitive to the needs of patients, carers and relatives when cancer is suspected. Realistic Medicine is the Scottish Government's initiative to put the person at the centre of decision-making and encourages a personalised approach to their care. Good communication is key and five questions to be considered by all involved can help lead to informed decision-making:

• Is this action really needed?
• What are the benefits and risks?
• What are the possible side effects?
• Are there alternative options?
• And, importantly, what would happen if we did nothing?

Good practice includes:

• Being sensitive to the person's wishes to be involved in decisions about their care
• Providing understandable information at a level appropriate to the person's wishes to be informed
• Being aware of, and offering to provide access to, sources of information in various formats
• Using the word "cancer" as a reason for investigation or referral unless there is serious concern about causing unwarranted distress
• Providing information about any referral to other services in format(s) most suitable for the person, including how long they might have to wait, who they are likely to see, and what is likely to happen to them
• Considering carefully the need for emotional and physical support while awaiting an appointment with a specialist and, where appropriate, providing a key contact
• Considering any carers' needs for support and information, taking issues of confidentiality into consideration
• Taking the individual's particular circumstances into account, for example age, family, work and culture
• Recognising that there are occasions when intrusive intervention is not in a person's best interests. There should be full discussion about alternative approaches, including with relevant others if a person lacks capacity, complying with the Adults with Incapacity (Scotland) Act 2000
• Maintaining a high standard of communication skills, including, for example, in the process of breaking bad news

2.1.2 Demographic factors

Deprivation affects the incidence of and mortality associated with cancers. It also impacts on the ability of people to access healthcare services. It is essential that any consultation or other opportunity where a person from a deprived area presents with symptoms suggestive of possible cancer is used to full advantage. Some cancers occur more frequently in certain communities, e.g. the lifetime risk of prostate cancer in black men is twice that of all men combined.

2.1.3 Comorbidity

The increasing number of people with long-term conditions and co-morbidity pose major clinical challenges and affect both the incidence of and mortality from cancer. Chronic disease management programmes afford an opportunity to identify symptoms suggestive of possible cancer.

2.1.4 Safety netting

It is not always appropriate for a clinician to refer someone immediately with new symptoms or signs which could be cancer (for example, one week of diarrhoea or a sore throat for 10 days) and an initial 'watch and wait' strategy may be appropriate. It is also important for clinicians to provide a 'safety net' and ensure people know what symptoms to monitor and when to return if their condition does not improve or change. In some cases, however people may be unwilling to watch and wait due to high levels of anxiety. In such cases, the referring clinician should ensure that this is detailed in the referral documentation.

Note that in children, repeat presentations (three or more times) of any symptoms which do not appear to be resolving or following an expected pattern should be considered for referral for a second opinion, taking into account parental/carer and child concerns.

2.1.5 Follow up

It is good practice for the referrer to consider ways of supporting the person to attend investigations, consultations or reviews and addressing any concerns they may have about their referral. For example, a leaflet such as Cancer Research UK's "Your Urgent Referral Explained" can be given to them at the time of referral. Other similar resources are available. Systems should be in place to ensure people are not lost to follow up.

2.2 Referral Process

2.2.1 Use of the Guidelines

The guidelines are designed for use in any primary care setting, by any member of the clinical team. Local arrangements should be in place in each NHS board area for advanced nurse practitioners and other nursing staff, pharmacists, dentists, optometrists, NHS24, paramedics and others to ensure rapid referral is arranged. This may be by direct referral (with simultaneous notification of the GP) or by making arrangements for the person to see their GP urgently, clearly notifying the concern about suspected cancer.

The guidelines 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.

2.2.2 Purpose of referral

The 'urgent suspicion of cancer' referral pathway is designed to allow the rapid assessment and investigation of a person to determine the cause of their symptoms. For people whose presenting symptoms persist, it is not acceptable to simply exclude cancer without providing an assessment of the likely underlying cause. This may involve individual hospital specialties making internal referrals to their colleagues to help determine the nature and cause of the presenting symptoms. These internal referrals should be undertaken with the minimum of delay and with good communication to both the patient and referring clinician. Where diagnostic tests are undertaken, the clinician requesting the test has a responsibility for acting on the result and ensuring that the patient receives this.

NHS boards may wish to consider to which diagnostic services primary care clinicians should have direct open access. In these situations the clinician would be responsible for communicating the result to the patient and arranging any subsequent follow up.

2.2.3 Clinical decision support tools and structured documentation/proformas for referral

To achieve consistency, clinical decision support systems and structured proformas for referral can be helpful for use in all clinical settings. Scottish Care Information (SCI) Gateway provides the means for electronic referrals incorporating structured proformas, but clinical decision support systems vary across NHSScotland.

2.2.4 Downgrading of urgent suspected cancer referrals

On rare occasions it may be acceptable for the receiving hospital specialty to downgrade an urgent suspicion of cancer referral to urgent or routine. This should never occur without notifying the referring GP practice timeously. The clinician should have the opportunity to explain why an urgent suspected cancer referral was requested. Vital information may have been omitted from the referral or may have become available since the referral was made. It is essential that the person is kept informed about any change in referral priority.

2.2.5 Feedback where no cancer is found

The referring clinician should receive timely feedback on the outcomes for all people with an urgent suspicion of cancer referral. Where negative results are found, and concerns still exist, the specialist should consider direct onward referral to another specialty. Information about inappropriate referrals should be fed back to the referring clinician detailing why it was felt to be inappropriate and suggesting an alternative course of action.

2.2.6 Opportunity for health promotion

Suspicion of cancer, whether warranting referral or not, is an opportunity to consider health promotion such as smoking cessation, alcohol, diet, obesity, exercise and engaging with national screening and immunisation programmes. People should be informed that 4 in 10 cancers are preventable , and that addressing risk factors can help reduce their overall cancer risk.

2.2.7 General points about suspected cancer

Cancer often presents with vague symptoms that do not help identify which pathway of investigation to follow. In particular, ovarian and pancreatic cancer often present very late so, in unwell people with nothing other than malaise and significant unexplained weight loss, most NHS Boards have pathways in place for Primary Care access to CT chest, abdomen and pelvis as first investigation

Recent evidence has identified thrombocytosis as a strong risk marker for malignancy, in particular lung, endometrial, gastric, oesophageal and colorectal cancer (acronym "LEGO-C"). With a cancer incidence of 11.6% and 6.2% in males and females respectively, these figures well exceed the 3% threshold to warrant investigation

Metastatic disease is commonly the first presentation of a new cancer. The possibility of an underlying primary cancer should be considered especially with symptoms and signs suggesting lung, liver, bone or brain cancer. For example, bone metastases are commonly due to prostate, breast and lung cancer. Metastatic disease should be borne in mind when anybody with a previous history of cancer presents with new symptoms

Tumour markers have a limited place in the decision to refer for suspected cancer: only PSA for prostate cancer in men, CA125 for ovarian cancer in women, and serum and urine paraproteins for myeloma should be routinely used in Primary Care

It is good practice to include general fitness or performance status in the referral (e.g. ECOG/WHO scale) in order to facilitate discussion about the most appropriate pathway

Grade	ECOG/WHO Performance Status
0	Fully active, able to carry on all pre-disease performance without restriction
1	Restricted in physically strenuous activity but ambulatory and able to carry work of a light or sedentary nature, e.g., light house work, office work
2	Ambulatory and capable of all self-care but unable to carry out any work activities; up and about more than 50% of waking hours
3	Capable of only limited self-care; confined to bed or chair more than 50% of waking hours
4	Completely disabled; cannot carry on any self-care; totally confined to bed or chair
5	Dead