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Research carried out in the International Observatory on End of Life Care (IOELC) at Lancaster University led by Professor Payne has played a major role in influencing the strategic direction of service and policy development globally. IOELC initiated the systematic collation of development data and delivered the first research-based international analysis of the development of palliative care. For example, research on access to opioids in 12 resource poor countries in central and eastern Europe via the ATOME project has delivered major impact, leading to significant changes in legislation and policy and improved access to pain medication, and palliative and end of life care for millions of people around the world.
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.
The ability of healthcare professionals to empathise with patients has been shown to enhance patient satisfaction, improve symptoms and promote well-being. Research at University of Glasgow has developed the Consultation and Relational Empathy (CARE) Measure — the first validated, patient-rated questionnaire developed in a primary care setting that measures patient perceptions of healthcare professionals' empathy and quality of care. The CARE Measure is formally embedded into healthcare professional training standards through its inclusion in Scottish General Practitioner (GP) appraisals and the Royal College of General Practitioners Membership (MRCGP) and Interim Membership by Assessment of Performance (iMAP) processes; through these means more than 8,000 GPs are using the CARE Measure. It has also been incorporated into the Scottish Government's policy on Healthcare Quality and adopted by the General Medical Council and the Chartered Society of Physiotherapy.
Accurate recording of adult SPC activity using the revised MDS has resulted in the transformation of SPC services. The MDS provides economic benefits by informing the planning and funding of local services by capturing full service costs and is being used to develop a new NHS funding system for SPC. Informing accurate audit and national benchmarking of services, it shows how revised service composition, enhanced day care, and seven day services, are contributing to reduced hospital admissions. This has both policy and economic benefits. It demonstrates how services are addressing SPC provision for non-malignant disease, a key policy driver.
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.
Quality of care for the increasing numbers of frail older people is an issue of international concern. Led by Professor Meyer at City University London, in partnership with Age UK and Dementia UK, My Home Life (MHL) is a collaborative movement of people involved with care homes for older people. It was established to improve the quality of life of everyone connected with care homes for older people and has become the recognised voice for the sector. The original underpinning research and ensuing projects all focused on knowledge translation, in particular the factors that enhance quality improvement in care homes. MHL actively works with care homes to progress quality improvement and share the lessons learned throughout the system. The programme has had a significant impact on both policy and practice in health and social care, influencing Government policy and supporting practice improvement across national and international borders.
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.
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.
The research has had significant impact in the UK on the development of social and spiritual support for people at the end of life and their families. With Professor Holloway as Social Care Lead on the National End of Life Care Programme (NEoLCP) since 2009, the research has underpinned the launch of a framework for the delivery of social care at the end of life which is now in its second phase of implementation. The framework is endorsed by the Association of Directors of Adult Social Services and has led to local and regional Action Plans and social care practice initiatives. The research on spirituality has led to scoping and training initiatives in healthcare practice and in the funerals industry within the UK and internationally.
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.