Development of an active surveillance pathway


Meet the team

NHS Lothian is a Health Board in Scotland covering Edinburgh and the surrounding area. This project was run by the Urology team at the Western General Hospital in Edinburgh. The large team is led by two Consultant Urologists who perform prostatectomies. They are supported by two cancer nurse specialists, who provide a prostate biopsy service, and a specialist physiotherapist providing therapy to men following treatment.

The big idea

NHS Lothian is involved in the ‘Prostate Testing for Cancer Treatment’ (ProtecT) project which is a multi-site national study which invites men for PSA tests and then compares the effects of different treatments. As a consequence of involvement in the study, GP practices in and around Edinburgh have been educated about prostate cancer and the use of the PSA test. There is evidence to suggest that this is affecting the mix of patients who are diagnosed with prostate cancer. In Lothian, there is an 80:20 split between patients with early stage disease and those with advanced disease on diagnosis. In the west of Scotland, this ratio is approximately 50:50. The hypothesis, therefore, is that the greater use of the PSA test across the local area, and its better use may be leading to an increase in earlier diagnosis of prostate cancer.

As a result of this high level of early stage presentation, across NHS Lothian there are more men eligible for active surveillance (as opposed to more acute interventions such as operations) and the average age of diagnosis is younger than in the west coast of Scotland.

To ensure that this group of men receive the support they need, a Clinical Nurse Specialist was funded to set up a virtual and face-to-face clinic for men on active surveillance.

Making it happen

The Clinical Nurse Specialist developed a system of managing men on active surveillance. This included:

  • postal follow-up (sending men a questionnaire which they responded to and are then followed up by telephone or face-to-face if necessary)
  • running a clinic for face-to-face support
  • developing and managing a database of who is on active surveillance.


To date 564 patients have been supported via a mixture of, postal surveys, face-to-face clinics and telephone follow up.

The new active surveillance pathway has:

  • Improved the experience of men on active surveillance (reduced anxiety, increased awareness of treatment plan).
  • Created a more robust management system which is likely to have improved clinical outcomes.
  • Allowed the analysis of the characteristics of this cohort of men.
  • Improved the use of resources, as men on active surveillance are now managed by Specialist Nurses as opposed to Consultants

A patient experience survey has been completed and the results show that they patients are happy with the new pathway.

  • 98% of patients felt they were given enough time
  • 98% of patients felt they were listened to
  • 98% felt they were treated with care and concern during their consultation.
  • 87% of men surveyed are happy with being followed up this way and being reviewed by the CNS.

Find out more

This project has been funded through our Health and Social Care Professionals programme

If you would like to learn more about this project please contact