The NHS Constitution highlights the importance of people being at the heart of everything the NHS does. People should be treated with compassion, dignity and respect and involved in decisions about their care and treatment. These key themes are reflected in NICE’s guideline on patient experience in adult NHS services and quality standard on patient experience in adult NHS services.

Specialist nurse

Having a named specialist nurse who is easy to contact for information, advice and support can help people feel reassured that they are well informed and involved as much as they want to be in decisions about their care. The NICE guideline on the diagnosis and management of lung cancer recommends that a lung cancer clinical nurse specialist (CNS) is available at all stages of care.

Lung cancer CNS are nurses who have completed an accredited programme of study in lung cancer. They are a core member of the multidisciplinary team (MDT), contributing to decisions around assessment and care planning. They coordinate the patient pathway and often act as the key worker for patients referred to the team. Recent studies have shown that lung cancer CNS assessments are associated with higher rates of anti-cancer therapies.

In recent years, more people with lung cancer have been seen by a nurse specialist but this number remains lower than expected

According to the National Lung Cancer Audit (NLCA), the proportion of people seen by a lung cancer CNS has increased, from 55% in 2008 to 70% in 2017 and the National Cancer Patient Experience Survey (CPES) reports that, in 2018, 90% of people with lung cancer were given the name of a lung cancer CNS. The CPES also reports that more than three quarters of people with lung cancer found their CNS easy to contact.

Workforce data collected by Macmillan show that there has been a general increase in cancer CNSs. While the total number of lung cancer CNSs has increased, given its prevalence as the third most common cancer, it would be expected that the proportion specialising in lung cancer would be greater than 11%.


People with lung cancer face an increasing amount of new and complex information at a time when their ability to process and understand it can be impaired by the stress of their illness. NICE recommends that people with lung cancer should be given accurate and easy-to-understand information and that they should have tests and treatment options explained, including potential survival benefits, side effects and effect on symptoms.

The latest CPES report shows that people with lung cancer are less likely to say that they were given easily understood, written information on their cancer compared with people with most other cancer types. Results for all other areas of communication that the cancer patient experience survey asks about are comparable between lung cancer and all other cancer types.

Everything was made clear but I was too scared to think straight and was unable to take it all on board. I couldn’t make an informed decision because of the terror I felt at dying and just went along with what I was advised to do. This, obviously, as I’m still here was the right thing to do.

Shirley, diagnosed at stage 4