Patient issues

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 Medicine³ 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”4 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.