Cancer in Scotland: Action for Change:
A guide to securing access to information
FOREWORD
"Information is the greatest gift"
cancer patient
Information and communication are crucially important. People affected by cancer rightly expect to have access to relevant information that is clear, at a time and in a form appropriate to them, and to have the opportunity to talk. Accessible information can lead to a greater sense of being in control at a time when everything can seem out of control. Being given access to information has a beneficial effect on patients and reduces anxiety. Those working with people affected by cancer need to ask themselves "how would I feel - and what information would I want to have?", and act accordingly.
We know that in Scotland people affected by cancer do not always get the information that they need and are often confused about what is happening to them. There can be a lack of clarity about who is responsible for communication at different points in the journey, what has been communicated and there can be problems with the quality of some of the information provided. Sometimes busy health professionals do not know of other sources of information outside the immediate clinical episode that could make a real difference to people affected by cancer.
This document poses relevant questions that the Cancer Networks and NHS Boards should seek to address. The challenge is to ensure that each Network has both a strategy for patient information and information policies so as to ensure easy access by patients and their carers to consistent and reliable information within the health system, as well as to sources of information and support outside.
As the working group heard from patients during the consultation process, finding and interpreting information can be a difficult and emotional area. It needs to be given priority.
IAN GIBSON
Chairman - Patient Information Sub-group of the Scottish Cancer Group