Urological Cancer Care Programme (UCAN)

Income from Charitable Donations (UCAN):

A new Urology Cancer Charity (UCAN) was launched in September 2005.  UCAN is a charity dedicated to raising awareness of urological cancers (prostate, kidney, bladder, testicular and penile), building more effective support structures and improving quality of life for people who are affected and their families.  Urological cancers are more common than many people realise, and account for 1 in 3 of all cancers in men and 1 in 5 of all cancers in men and women. Over the past 4 years, £2.5 million has been raised from charitable donations through a successful fundraising campaign by UCAN. 

The Director of Operations for UCAN is Dr Sara Jane MacLennan.

UCAN aims to: 

  • Develop strategies to raise public awareness about urological cancers, encouraging people to seek treatment at an early stage.
  • Work with people living with urological cancer and their families to understand their needs more clearly and so inform the design of future services including aftercare packages when treatment is complete.
  • Develop and deliver support strategies and patient-to-patient peer support networks to help people cope with their illness and treatment and make as full a return to normal life as possible.
  • Conduct large national and international collaborative studies aimed at determining the best ways of treating patients with urological cancers and the best ways of managing some of the unwanted effects of such treatments reflected by some of our current and previous research programmes (MAPS trial and OTIS Study). 
  • Support research into new technologies for more reliable ways of diagnosing and treating patients with urological cancer.

Current Programmes of work include:

Programme 1 - Information Needs and Decision making:

  • Information and support needs of patients and the family unit. One of the main aims of this work is to collect a wide range of peoples' experiences and opinions on treatments and aftercare to allow patients and their families to be centrally involved in decision-making and to help them cope with their illness and treatment and make as full a return to normal life as possible. This will inform the development and delivery of future services and patient information, support strategies and patient-to-patient peer support networks.  
    Research Lead: Dr Zoe Skea
  • Defining patients and families experiences and concerns regarding the decision-making process related to their care. The aim of the study is to investigate the antecedents and consequences of treatment decisions in men with localised prostate cancer.
    Research Lead: Moira Cruickshank
  • Living beyond urological cancer. This work will explore the broader aspects of life that are affected by the diagnosis of a urological cancer. One example of this is the management of work and working life following diagnosis of a urological cancer.
    Research Lead: Dr Sara Jane MacLennan

Programme 2 - Addressing Uncertainties in Cancer Care:

  • Systematic review of evidence. The review team are currently undertaking a series of systematic reviews of the five main urological cancers (prostate, bladder, kidney, testis and penile cancer) as well as urinary diversion and bladder replacement surgery following cystectomy. The primary purpose of these systematic reviews is to identify, appraise and synthesise research-based evidence about urological cancer.
    Team Lead: Dr Mari Imamura  
    Review Team: Dr Steven MacLennan, Dr Imran Omar, Dr Thomas Lam
  • Plain English Guides. This work will build on the systematic review of the evidence and the patient information needs programme of work. The aim of this study is to provide wide-ranging practical recommendations for creating and delivering clinically sound and easily accessible information packages for patients diagnosed with urological cancers.

These recommendations will take into account patients' values and preferences, and the best current clinical evidence, and help to develop comprehensive, up-to-date and accessible information about the management options for all five urological cancers. This information will be based on the best research evidence and presented in everyday language accessible to non-specialists.
Research Lead: Dr Karolina Kazimierczak

Programme 3 - Delivering Support: Evaluation of the new Cancer Care Service and Health Awareness Programme:

UCAN has made very good progress since commencement of the project in January 2008.  The UCAN Care Centre was opened as planned on the 21st of January 2008 by the Health Minister, Nicola Sturgeon.  The UCAN care centre is now routinely used by staff to deliver diagnoses to new patients and provides an environment that offers support and information to patients and their families. The increasing use of the UCAN care centre and the growth of the patient to patient support network and the online forum is evidence of the need for such a service in the North of Scotland.

A key part of ensuring our continued success is the evaluation of the services that we provide and the impact of our health awareness programme. This evaluation is focused on:

  • Evaluation of the UCAN Care Centre
  • Evaluation of UCAN support packages e.g. online forum and buddy network
  • Evaluation of health awareness campaign

Research Lead: Dr Sara Jane MacLennan
Research Team: Chifundo Makuta, Debbie Munro, Kate Synott, Linda Pennet, Lesley Simpson