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Cancer in Scotland: Action for Change:
A guide to securing access to information
01.
IMPORTANCE OF INFORMATION TO PATIENTS AND CARERS
Cancer is one of the greatest health problems facing Scotland. In 1998 over 25,500 cases of cancer were diagnosed in Scotland, and in 2000 almost 15,000 people died of the disease. By the age of 74, approximately 1 in 4 people can expect to have been diagnosed with cancer. Survival from cancer in Scotland has improved significantly over the last 25 years resulting in more and more people living with cancer. And that is the key - living with cancer. More people will need palliative care and other support services, more people will need information individual to their needs.
Direct involvement of individuals in their own care requires relevant information that is both accessible and comprehensive to the individual user/patient (NHS Executive
et al 1998). The NHS Centre for Reviews and Dissemination (1997) suggested that offering people affected by cancer full verbal and written information about their condition and its management would "
make a major contribution to improving quality of care". It is recognised that the desire/need, amount and timing of information provision varies among different patients and carers. Information on procedural, factual and practical support appears to be sought to help people manage the social, psychological and financial constraints that illness imposes. Patient information needs include - information on diagnosis, prognosis, risks, results of tests and investigations, therapeutic procedures, drug information, aetiology of cancer and care and treatment following discharge from hospital. This also includes information on feelings, examples of experiences and coping mechanisms. Local arrangements for providing support and further information should be available across cancer networks, including opportunities for discussion with relevant professionals.
The Nuffield Institute for Health and NHS Centre for Reviews and Dissemination (1996) in presenting studies of consultations found women with breast cancer were less anxious when given full verbal and written information, as well as opportunities to discuss options with clinical staff. Similarly, in 1998 they found that patients with lung cancer who were given sufficient information were less anxious and expressed higher satisfaction. Bell
et al (1996) for the National Cancer Alliance found the provision of information to be a significant issue for people affected by cancer, and at times became a pressing need.
A high proportion of complaints received by the NHS result from inadequate information or poor communication. Feedback from the public repeatedly emphasises a need for better information about their health, their treatment, the options for care and the availability of health services. Without access to information it is impractical to expect patients to make informed choices or take more responsibility for their own health.
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