Surviving cancer without compromising aspirations.

This short paper is a reflection of how one person coped, survived and grew following numerous metastatic incidences over a 20 year period. Surviving cancer is a complex process but coping with the threat of regular recurrence has required a coping strategy that embraced the disease, set it aside and refused to compromise hopes, dreams and future life. Central to this personal journey has been the need to redefine normality, live with and set aside the fear of future metastases and death and find an answer and meaning in a changing biology, increased morbidity and possible mortality. This paper contends that not compromising the direction of travel and being able to focus on a career has ensured that survival was valuable and valued. A working environment in which students' problems have been immediate has produced different stressors. These have ultimately forced personal worries to be set aside, while living with cancer has become normal and accepted.

Roles, power and subjective choice.

This paper examines the history underpinning the development of patient involvement in the decision-making process and the emergence of choice in the management of their illness. From the beginnings of the National Health Service (NHS) in United Kingdom, power, and therefore decisions, were in the hands of a well-organised and structured medical profession. With the dominance of a biomedical model of health care 'patient power' was subsumed by that of 'experts' in various emerging fields. Over the past 10 years however, in response to top down and bottom up decisions, evidence and a changing culture, a process of partnership is emerging. Such a philosophy enhances the value given and attached to all who participate. A new generation of patients have been brought up under the umbrella of the NHS, they have access to complex and detailed information and they have legally embedded power to participate in decisions that affect them. The culture of medicine is changing but if this new agenda is to have real meaning and make progress it must be embraced by all sections of society.

What information patients with localised prostate cancer hear and understand.

Patients with localised prostate cancer can decide on a treatment option that is appropriate for their needs and lifestyle only if their doctor provides information that they understand and can remember. This small study (n10) examined the knowledge of men who had been diagnosed but had not been treated for early stage disease. A semi-structured interview schedule enabled these men to demonstrate their knowledge of their disease and its treatment. They were aware that they had incomplete understanding, but no one asked that information should be provided until, and in a language, they understood. Only two men felt that the choice of treatment belonged to them, others agreed with the decision of their urologist although they did not understand why a specific treatment was recommended or the implications of that treatment.

Information on video format can help patients with localised prostate cancer to be partners in decision making.

A video was produced to inform men diagnosed with localised prostate cancer of the different management options for their disease. It was tested for increased knowledge and understanding on a healthy population of similar age (n=10), who were assessed before and after watching the video (20 interviews). The video was then shown to 12 men who had been diagnosed with prostate cancer but had not started any treatment for their disease (24 interviews). Interviews among the healthy cohort revealed not only the lack of knowledge of anatomy and physiology but also the way in which these men used past experiences to help explain and remember complex medical procedures. The patients focused on the treatments and outcomes, remembering less of the technicalities. All men interviewed vividly remembered the patients participating in the video; they drew inferences and developed affinity towards specific individuals. Both groups felt that video provided information in a user friendly way. Although remembering few anatomical terms all participants described a visual image that led to a perception of understanding rather than a definitive increase in knowledge. Patients, however, felt they had a clearer understanding of the disease and its treatment, and therefore better able to be active informed partners in the decision-making process.

Factors affecting the shift towards a 'primary care-led' NHS: a qualitative study. National Health Service.

BACKGROUND: Local Health Care Cooperatives (LHCCs) and Primary Care Groups (PCGs) reflect the continuing importance of a shift towards a 'primary care-led NHS' as a health policy goal in England and Scotland. Yet many commentators have concluded that, to date, the extent of the shift has been limited. To assess the ways in which LHCCs and PCGs might develop in the future, it is necessary to understand the progress made in moving towards a primary care-led NHS and the factors that have either encouraged or hindered its development. AIM: To investigate the nature of the barriers to, and the incentives encouraging the shift towards a primary care-led NHS. DESIGN OF STUDY: Qualitative study using semi-structured interviews. SETTING: Purposive sample of key stakeholders in health authorities, trusts, and primary care in four urban health authorities (two in Scotland and two in England). METHOD: The interviews discussed the commissioning types, the nature and scale of shifts that had occurred, the barriers to and the factors promoting the shift, the mechanisms for discussing and monitoring the shifts that were taking place and the likely impact of LHCCs and PCGs in relation to three common conditions: inguinal hernia, stroke, and asthma. RESULTS: Shifts in activity from secondary to primary care were regarded as small, non-strategic, piecemeal, and not direct underpinned by resource shifts. Barriers identified by responders include the immobility of existing resources, concerns in the primary and secondary care sectors about the appropriateness of the shift weak incentives supporting the shift, the perspectives of general practioners involved in commissioning and the absence of co-operation between key stakeholders. CONCLUSION: The development of a primary care-led NHS needs to resolve a fundamental tension at the heart of the policy: those to whom power was devolved were neither equipped nor minded to engineer the strategic resource shifts necessary to underpin a more primary care-based NHS.

Does writing a list help cancer patients ask relevant questions?

We examined the use of written lists to give patients an opportunity to have their questions answered. Patients undergoing radical radiotherapy for cancer were given a sheet of paper with the simple prompt to write questions and give to the hospital doctor at their appointment 3 weeks later. At 3 months, patients were asked about their use and opinions of the written list. About half of the 478 patients attended with a written list. Fewer patients living in deprived areas used the list compared to more affluent areas. Doctors thought that 34% of patients would not otherwise have asked those questions and 91% of prompted discussions were a worthwhile use of time.