As the delivery of healthcare has been devolved down to the four countries—England, Scotland, Wales, and Northern Ireland—there are therefore differences in budgets, priorities, and regulatory processes that shape how palliative care is delivered. Each of the nations in the United Kingdom has developed its own palliative care strategy that reflects these differences, and they commonly promote the use of the three tools and approaches: an integrated care pathway, the Gold Standards framework, and advance care planning.
Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of 'key' external advocates and leverage of additional resources by adoption of care pathway tools.
This chapter discusses the way in which the system world attempts to meet people's needs when living and dying with dementia. It looks at a number of models of service provision that have been developed in response to the perceived inevitability of the physical and cognitive decline that accompanies dementia. The chapter also provides an account of care for people with dementia, including that provided by clinical medicine and person-centred care.
The National Cancer Research Institute's (NCRI) strategic review identified the need to build research capacity in UK supportive and palliative care research.1 Only 4.3% of direct spending on cancer research by NCRI partners (about £11 million per year) was being directed at supportive and palliative care, and weaknesses in the field included:
To redress these, NCRI recommended the establishment of interdisciplinary, supportive and palliative care, research collaboratives which were to include academic organisations, researchers and individuals, and groups from different research disciplines and clinical professions, whose purpose would be to enhance the value, quality and productivity of UK cancer-related supportive and palliative care research.2
We have described the financial and personal challenges of building collaborative research more fully elsewhere.3 This paper uses an evaluative framework4 to describe Cancer Experiences Collaborative's (CECo) activities, and assess the extent to which CECo has built research capacity in supportive and palliative care. It considers the legacy of CECo in the context of the wider discussions about value of collaborative research, and offers a critical appraisal of this type of funding model.
CECo was one of two UK interdisciplinary research groups that was awarded NCRI collaborative funding (2006–2011) of £1.9 million. It comprised a partnership between researchers at five UK universities (Lancaster, Liverpool, Manchester, Nottingham and Southampton), clinical organisations (including the four largest hospices in England, and cancer centres); Help the Hospices (a leading charity supporting UK hospice care), …
The relationship between research and practice development has not always been a close one. Researchers focus upon the production of new knowledge to create the evidence base upon which the development of practice is taken forward, usually by other people within the clinical area. Work being undertaken at the Macmillan Practice Development Unit (MPDU) in London about the dissemination and utilisation of evidence concerning the management of breathlessness has raised a number of issues. These concern the confidence of practitioners to take on new approaches within the practice sphere, their desire for accredited education, and questions about responsibility for, and ownership of, the dissemination process. Different values about the nature of learning are explored here, which may explain the dissonance between practitioner and researcher expectations about the dissemination and utilisation process.
ContextTo provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care.ObjectivesTo evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates.MethodsThis is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement).ResultsMost staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09–0.43, P = 0.003), nurses (0.59; 95% CI: 0.43–0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08–0.34, P = 0.002).ConclusionsThe level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed.
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