The objectives of this study were to establish the extent to which UK primary care has adopted recommended practices on supportive and palliative care of adults with cancer, and to relate this to participation in national initiatives. We conducted a cross-sectional postal questionnaire survey of a random sample of UK general practices. In total, 60.0% of practices (2096 of 3495) responded to the survey: 61.5% reported involvement with the Gold Standards Framework (GSF); 24.4% with the Liverpool or other End of Life Care Pathway; 12.3%, with the Preferred Place of Care (PPC) initiative; and 8.4% with Advance Care Planning (ACP). Participation in GSF contributed most to the variance in practice organization scores; and practice organization scores contributed most to the variance in clinical care scores. Participation in ACP or PPC, and higher clinical care scores were associated with an increased likelihood of reported high rates of death at home for cancer patients. Our findings appear to support the role of national initiatives in improving the quality of end-of-life care delivery in general practice. A population-based study would be required to assess the effect of end of life care on clinical outcomes and patient or carer experience.

The majority of blood donations in Trinidad and Tobago are made as replacement by family members or friends. National Blood Transfusion Policy was drafted in 2007 to promote voluntary, repeated donation. The objective of this study is to assess the current rate and reasons for donor deferral, and the aim is to guide the proposed donor education and recruitment programme. A retrospective study of pre-donation deferral of prospective blood donors at the National Blood Transfusion Centre, Port of Spain, Trinidad and Tobago, was conducted. Records of all pre-donation deferrals over a 12-month period were studied. As many as 11,346 pre-donation screening interviews were conducted. There were 4043 (35.6%) deferrals. The most common reasons for donor deferral were exposure to high-risk sexual activity (27.6%), low haemoglobin 22.2% and hypertension 17.5%. Other reasons such as medication, chronic medical illness, tattoos, travel history, recent pregnancy, surgery or presentation outside the accepted age limit caused 33.8% of all deferrals and the majority (34.7%) of male deferrals. Low haemoglobin (44.5%) was the most common reason among females. The rate of deferral of voluntary donors was not significantly different from that for replacement donors (31.7 vs. 35.4%, P = 0.25). This study exposed a lack of public awareness as the principal reason for an unacceptably high rate of donor deferral. Donor education about selection criteria needs to be urgently addressed as an objective of the National Policy. Monitoring and evaluation of deferral rates and reasons could be used as one indicator of the effectiveness of the Policy.

This trial result identifies a potential negative effect of SPARC in specialist palliative care services, raising questions that standardized holistic needs assessment questionnaires may be counterproductive if not integrated with a clinical assessment that informs the care plan.

A method was developed for evaluating outcomes of nursing care in complex situations such as care of people who are dying. Positive outcomes of care for patients that were directly attributable to the care provided by Macmillan specialist palliative care nurses were found for the majority of patients. For a small number of patients, negative outcomes of care were identified.

Significant barriers exist to the appropriate use of opioids in end-of-life care. If international priorities on improving pain management at the end of life are to be achieved, educational opportunities for generalists need to be enhanced, and effective interprofessional working models need to be developed so that pain management for patients at the end of life is optimized.

The remit and boundaries of the Macmillan Nursing role in the UK have been called into question recently by a number of policy-driven changes. The rapid appointment of tumour site-specific nurses and the development of posts for palliative medicine, stemming originally from the Calman-Hine recommendations for reorganizing cancer services, have created unparalleled challenges of adaptation to new working practices and procedures. The extent to which Macmillan Nurses are adapting to these new demands was addressed as part of a major evaluation study of UK Macmillan Nursing in 12 sites commissioned by the UK charity Macmillan Cancer Relief. This paper draws upon semi-structured interviews with Macmillan Nurses (n = 44) and their key colleagues (n = 47). We found that differences of expectation between Macmillan Nurses and their managers about the appropriate focus of their work lead to problems of role ambiguity and role conflict; that Macmillan Nurses lack resources with which to develop an educative and consultative role and yet substitute for inadequacies in skills and knowledge of other health care staff; and that problems are associated in co-working with newly appointed cancer site-specific nurses and palliative medicine colleagues. Macmillan Nursing has a crucial role to play in meeting the objectives in the NHS Cancer Plan. However, in order to ensure that their expertise is used efficiently and effectively, there is an urgent need to clarify the nature and scope of the Macmillan Nurse role, to attend to issues of team working and to improve the skills of nonspecialist staff in palliative care.

A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire. Out of these 407 individuals, 301 (74% of those who agreed to receive a questionnaire and 37% of the 815 contacted) returned a completed questionnaire. A single reminder letter was sent to non-responders. It was found that the majority of those who received help from district nurses or practice nurses (90%) said that they were excellent or good. However, nearly 40% of respondents reported needing more nursing help. More help was also needed from social care services. For 103 out of the 301 respondents, it was known that the deceased person wanted to die at home; only 44 did so. Only one-fifth of respondents had the opportunity to talk to someone from health and social services after their bereavement; a large majority (four-fifths) found this helpful. One-tenth of respondents reported untreated pain at home; however, there was evidence for an increasing proportion of those treated having received good pain relief. Although there are high levels of satisfaction with care and services received by Powys residents, deficits exist in relation to: symptom control, nursing help, assistance from social services with transport and bathing, communication, and bereavement support.

Of 72 papers identified, 71 were obtained and 20 were considered to meet the inclusion criteria. One paper could not be traced by library sources, due to incorrect referencing. Of the total of 20, 11 focused on needs of patients or carers; five were surveys of place of death or end-of-life care; and four were reviews of services in specific areas, which included reporting of patient and caregiver needs. The papers identified all originate from the developed world and there were no studies specifically relating to ethnic minorities. Papers Focusing on Patient and Carer Needs Eleven papers specifically examined needs of patients and carers (Table 1). Two of the four papers using survey methods arose from a demonstration project in Montana, U.s.A. (17,18). Sullivan et al. report on the responses to the final open-ended question "What have we not asked you about living with cancer that we should have asked?" (17). The 290 responses revealed a range of themes: coping, knowledge, support, interpersonal relationships, effe~t of treatment, life view, and a range of emotional concerns. The authors do not comment on whether these concerns differ from those of urban dwellers, but do suggest that health professionals consider them in the light of other work