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King's College London (KCL) researchers have created, refined and validated the Palliative care Outcome Scale (POS), a tool that measures the physical, psychological, spiritual and information needs of patients at the end of their lives and their families. The POS has had an outstanding impact on clinical competencies and knowledge, and has underpinned an international collaboration to develop standards for palliative care outcomes. The POS is embedded increasingly in everyday clinical practice, improving the care of patients affected by advanced conditions and providing support for their families. The POS, widely used regionally and nationally in the UK to evaluate and improve the quality of care, has been culturally adapted for use in 20 European Union countries, and in Africa and other countries around the globe.
UCL research into end-of-life care has informed policy on palliative care for dementia patients and influenced NICE quality standards for end-of-life care in three areas: spirituality, psychological assessment, and advance care planning. The research has also been used by the charity St Mungo's to develop educational resources for services working with homeless people with advanced liver disease. Evidence collated by UCL on the importance of palliative care in heart failure has formed the basis of Caring Together, a £5m investment by Marie Curie Cancer Care and the British Heart Foundation to improve end-of-life care in heart failure. A review of the effectiveness of hospice care is being used to support commissioning bids for end-of-life care services.
Beneficiaries of this research are patients in intensive care and healthcare staff. This research has had impacts in two distinct but related areas:
These advances are informed by our synthesis and application of rigorous, innovative methodologies relating to questionnaire development and real-time data collection.
Improving patient experience of health services is a policy priority worldwide. The University of Manchester (UoM) has conducted research on patient experience since 1995, leading to the development of a series of validated measures for assessing patient experience of quality of care in primary care, including access to care and the degree to which services are patient-centred. Our measures have been in routine use in the NHS since 2004, sent to samples of several million patients. The data have been used to provide incentives for the highest quality practices, and to inform policy makers about current care throughout the UK.
The research has led to the design of a new clinical pharmacy service model, centred on community pharmacies, to improve the care of patients with palliative care needs living in the community. This resulted in better provision of information for patients (and their carers) and new training resources and staff development opportunities for the multi-disciplinary palliative care team. Funding has been secured to rollout the new service across NHS Greater Glasgow and Clyde Health Board (NHS GGC - 1.2M population) in 2013. The research has also supported a successful bid to explore the service model in a remote and rural Health Board (NHS Highland) and has informed specific programmes of Macmillan Cancer Support UK, pharmacy workforce planning, and the Boots Macmillan Information Pharmacists initiative.
Research at Oxford has played a central role within the recent restructuring of the nursing workforce to improve healthcare quality in a context of growing service demands and tightening resource constraints. Much of this restructuring has been heavily dependent on the use of the Healthcare Assistant (HCA) role, provoking much controversy. Presented as a flexible, low cost resource, these HCA roles are also unregulated and therefore seen as a potential source of patient risk. Oxford researchers have fed into this debate across a number of projects, strengthening the evidence base on the nature and consequences of the HCA role. Examining the role from the perspective of different stakeholders, these projects have impacted on national, regional and local policy and practice centred on the management and use of HCAs. In so doing, the research has contributed to the development of a more productive and safer nursing workforce.
There are an increasing numbers of people living into very old age. At the same time there is a drive to enable people to live within their own homes for as long as possible. Consequently, health and social care services that previously would have experienced very few people with dementia now have this as part of their core function. Yet there is no tradition in these services of supporting people with dementia and there are many reports of inadequate care. For example, Valleley reports that over half of people living in extra-care housing with dementia were admitted to other care settings during the first two years due to challenging behaviour, conflicts with staff and other residents, and distress on the part of the person with dementia.i Similarly, hospital patients with acute and chronic medical conditions concomitant with dementia are consistently reported to experience poorer quality outcomes than patients with similar conditions without dementia.ii The research described below has had significant benefits for those living with dementia both in extra-care housing and in hospital settings, primarily at the national level but also internationally. It has enhanced quality of life for individuals living with dementia, improved the practice of professionals working with people with dementia and had economic benefits.
Work on better management and identification of Medically Unexplained Symptoms (MUS) has led to the introduction of new treatments in primary care in England through the Improving Access to Psychological Treatment (IAPT) programme as well as having an impact on service planning and commissioning. These approaches have also been implemented into the routine training and practice of General Practitioners (GPs) in parts of Europe. A clinical and economic evaluation of a psychosocial approach to chronic fatigue syndrome using general nurses and development of a cognitive behaviour therapy approach has changed general practice and enhanced the patient experience for those with MUS.
The University of Nottingham's Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care has enhanced the understanding, implementation and uptake of advance care planning for end of life care. Its work has shaped public policy and influenced national initiatives that have improved quality of life and reduced the number of deaths in hospitals. The research has been cited as an exemplar by the World Health Organisation and has helped inform policymaking at European level. It has guided professional practice, educated care staff and contributed to a more positive public attitude towards talking about end of life issues.
Impact: Health and welfare; evidence-based palliative care for patients with non-malignant disease beyond cancer patients and in low-income countries; influencing policy; public engagement.
Significance: Care quality-standard changes and targeted interventions: for example, up to 50% fewer unplanned hospital admissions from nursing homes. Palliative care service development/redesign internationally; clinical tools deployed internationally.
Beneficiaries: Patients and their families/carers; NHS and healthcare providers; policymakers including UK and international governments; medical charities.
Attribution: The work was performed by an international team led by S. Murray at UoE.
Reach: International; policy changes and new guidelines/service structures in 11 countries (UK, Europe, N. America, Asia, sub-Saharan Africa); applicable to all those at end of life.