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  5. Referral process

These Guidelines are designed to be used in any primary care setting, by any member of the clinical team. Local arrangements should be in place in each NHS Board for ANPs and other nursing staff, AHPs, pharmacists, dentists, optometrists, NHS24, paramedics and others to ensure rapid referral is arranged.


Referral processes will differ by clinical group and may include direct referral (with simultaneous notification of the GP when applicable) or by planning for the person to see their GP urgently, clearly notifying the concern about suspected cancer.


The Guidelines will also be relevant to secondary care healthcare professionals to promote equal access to investigation and to facilitate Active Clinical Referral Triage (ACRT) and interdepartmental referrals.

Purpose of an urgent suspicion of cancer (USC) referral

NHS Boards have well-established USC referral pathways to facilitate prompt diagnosis. The USC referral pathway is designed to allow the rapid assessment and investigation of a person with clinical features suggestive of a cancer diagnosis 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 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 carried out as quickly as possible and with effective communication to both the patient and referring clinician to optimise the patient’s journey. Where diagnostic tests are undertaken, the clinician (primary care or secondary care) requesting the test has a responsibility for acting on the result and ensuring that the patient receives this information.

 

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. Effective communication is key, and the Benefit, Risk, Alternative, Nothing (BRAN) questions should be considered by all involved to help lead to shared decision-making. 

People should be encouraged to ask questions, for example:

B – What are the Benefits of this test or procedure?

R – What are the Risks of this test or procedure?

A – Are there any Alternatives?

N – What if I do Nothing?

 

Meanwhile, clinicians should also ask themselves:

B – Will this patient really Benefit from this test / procedure / hospitalisation?

R – Am I exposing this patient to Risks?

A – What Alternative options have we discussed?

N – If I were this patient, would I consider doing Nothing at this stage?

 

It is also important to consider the individual’s particular circumstances, for example age, family, work, and culture.

It is good practice to assess general fitness, frailty, and/or performance status in the referral (e.g. Eastern Co-operative Oncology Group/World Health Organisation ECOG/WHO performance status and Clinical Frailty Scale) to facilitate discussion about the most appropriate investigations needed.

It is also important to encourage action that supports optimisation, particularly when modifiable factors are identified, and a patient is keen to proceed with referral, investigation, and treatment. Early optimisation or prehabilitation can enable treatment and improve outcomes. Further information and resources for patients and health care professionals is available at Prehabilitation for Scotland.

It should also be recognised 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.

Further good practice includes:

  • Being sensitive to the person’s wishes to be involved in decisions about their care.
  • Carefully considering the need for emotional and physical support while awaiting an appointment with a specialist and, where appropriate, providing a key contact.
  • 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, including different languages and exploring options for interpreter support.
  • 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 the 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 any social or practical support that the person may need to help facilitate their attendance at any appointments and reduce risk of non-attendance. Further information is available at 'applying a missingness lens to healthcare'.
  • Considering any carers’ needs for support and information, taking issues of confidentiality into consideration.
  • Maintaining a high standard of communication skills including, for example, in the process of breaking bad news.

For further information, the National Realistic Medicine toolkit for professionals is available.

 

Opportunity for health promotion

People presenting with potentially concerning symptoms, whether warranting a USC referral or not, is an opportunity to consider health promotion such as smoking cessation, reducing alcohol intake, diet, obesity, exercise and engaging with national screening and immunisation programmes. It may be helpful to inform people that 4 in 10 cancers are preventable11, and that addressing risk factors can help reduce their overall cancer risk. The resource - Initiating a brief intervention - is a guide for health professionals on discussing cancer risk reduction with patients.

 

Structured documentation for referral

To achieve consistency, a standard referral form can be helpful for use in all clinical settings. Scottish Care Information (SCI) Gateway provides the means for electronic referrals and the ability to create such a form. Use of these may vary across NHS Scotland.

 

Further considerations for assessment and referral

GP gut feeling

GP ‘gut feeling’ is an uneasy feeling experienced by a GP that something is wrong with a patient even though there may not be any specific indications to suggest this. It may also be described as ‘intuition’, ‘suspicion’ or ‘instinct’. It is derived from a rapid summing up of multiple verbal and non-verbal patient cues and is related to continuity of care and clinical experience. GP ‘gut feeling’ is a useful diagnostic aid that has been shown to be predictive of cancer and can be used with symptom combinations included in clinical guidelines12,13.

 

Non-specific symptoms

USC referral pathways function particularly well in cases where symptoms and signs are suspicious of a specific tumour type. However, cancer can present with non-specific symptoms (such as malaise, abdominal pain, or significant unexplained weight loss) that do not help identify the most appropriate referral pathway.

Weight loss is a non-specific symptom that poses a diagnostic challenge in primary care. It can be associated with several conditions including cancer. Published data shows that the likelihood of a cancer diagnosis is increased in the 3-6 months after the first record of unexpected weight loss in primary care14. The strongest association was in men aged 50 and over and women aged 70 and over. The strongest association was in men aged 50 and over and women aged 70 and over. The most frequent cancer types were pancreas, gastro-oesophageal, lymphoma, hepatobiliary, lung, bowel and renal-tract. Data has shown that the amount of weight loss and the duration are important in assessing a person’s risk of cancer15.

Throughout SRGs, where weight loss is referred to, it is unintentional (e.g. not due to weight loss therapy or lifestyle changes) and greater than 5% or more of body weight. It should be noted that it is not always possible for primary care to verify a patient’s weight loss through recorded weights. This is particularly relevant for those without access to scales at home. Therefore, it is acceptable to include a strong clinical suspicion of weight loss, such as dropping dress sizes or needing a tighter hole on a belt.

Abdominal pain is common in general practice but can be the presenting feature of several cancers including pancreas, colorectal, ovarian, stomach, or oesophagus16.

It is recommended that when a person presents with non-specific symptoms, clinical features of a specific cancer are sought to guide referral. For those people where this is not apparent, some health boards have access to a Rapid Cancer Diagnostic Service (RCDS), whilst others have direct access to imaging for primary care practitioners. Direct access imaging can enable the differential diagnosis to be narrowed and referral to the appropriate secondary care specialty to be made, thereby reducing delays. The availability of these pathways varies across NHS boards.

 

Thrombocytosis

Reactive thrombocytosis is the most common reason for a raised platelet count. Raised platelets are also seen in a variety of haematological conditions including essential thrombocythaemia, polycythaemia vera, primary myelofibrosis, chronic myeloid leukaemia, myelodysplastic syndromes, and unclassified myeloproliferative disorders.

Evidence has identified thrombocytosis as a risk marker for malignancy, in particular lung, endometrial, gastric, oesophageal, and colorectal cancer (acronym “LEGO-C”). An English cohort study published in 201717 showed that the incidence of all cancers in patients aged 40 or over with new thrombocytosis – platelet count >400 x 109/L – was 11.6% in men and 6.2% in women. This compared with a cancer incidence in the control group of 4.1% in men and 2.2% in women. In addition, data has shown that when thrombocytosis occurs in combination with elevated alkaline phosphatase (ALP), there is a higher PPV for cancer than thrombocytosis alone18.

When considering the possible cause of thrombocytosis, it is important to note that significant reactive thrombocytosis can take 4-8 weeks to return to baseline. Thrombocytosis can also be associated with chronic inflammatory conditions and may not resolve.

If unexplained thrombocytosis is identified, it is advisable to assess for any signs or symptoms of cancer and then refer to a tumour-specific USC pathway if appropriate. If unexplained thrombocytosis is found without any tumour specific symptoms, then it is recommended that a chest x-ray is arranged. If there is unexplained thrombocytosis combined with non-specific symptoms such as significant weight loss or if there is associated GP ‘gut feeling’, it may also be appropriate to refer for further investigation through either a RCDS or GP direct access to imaging pathway.

 

Metastatic cancer

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 or lung cancer. Metastatic disease should be considered when anybody with a previous history of cancer presents with new symptoms or with non-specific symptoms such as weight loss or fatigue.

 

Tumour markers

The tumour markers described in this Guideline have a role in recognising who to refer as USC. These include Prostate-Specific Antigen (PSA) for prostate cancer in men, Cancer Antigen 125 (CA125) for ovarian cancer in women, and serum and urine paraproteins for myeloma. The utility of the full range of tumour markers used in cancer pathways is not explored in this document.

 

Regrading of referrals

After ACRT, the receiving hospital specialty may regrade a USC referral to urgent or routine. There may also be occasions where an urgent or routine referral is regraded to USC. The referring GP practice should be notified promptly of any regrading with clear communication about decisions to reduce patient anxiety and facilitate continuity of care. The healthcare professional should have the opportunity to explain why a USC referral was requested, including any ‘gut feeling’. Vital information may have been omitted from the referral or may have become available since the referral was made. It is essential that the patient is kept informed about any change in referral priority.


The referring clinician should also receive timely feedback on the outcomes for people referred as USC. Where negative results are found, and concerns still exist, the specialist should consider direct onward referral to another specialty.

For further information, please see the Urgent Suspicion of Cancer National Regrading guideline.

 

Safety netting and follow up

It is not always appropriate for a clinician to refer someone immediately with new symptoms or signs which could be cancer (for example, 1 week of diarrhoea or a sore throat for 10 days), as 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. This is particularly pertinent if the persistence of a clinical feature would prompt consideration of a USC referral. The advice given should be clearly documented. In some cases, however, people may be unwilling to watch and wait due to elevated levels of anxiety. In such cases, the referring clinician should ensure that this is detailed in the referral form.

Vague or non-specific symptoms in children may require a lower threshold for referral due to their higher risk of delayed diagnosis. Referral to secondary care should be considered for children with repeat presentations (three or more times) of any symptoms which do not appear to be resolving or following an expected pattern, taking into account parent/carer and child concerns.

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. Systems should be in place to ensure people are not lost to follow-up.

There are safety netting tools available which may be helpful, for example: