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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.
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 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.
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: Improved depression care for people with cancer.
Significance: Assessment of emotional distress and evidence-based intervention to manage depression has a direct effect on quality of life of cancer patients. It may also reduce suicide attempts among them.
Beneficiaries: Cancer patients, NHS and healthcare delivery organisations.
Attribution: The work was led by Sharpe (UoE), with UoE Cancer Research Centre colleagues and collaborators in Manchester and London.
Reach: International; this work directly affected NHS practices and clinical guidelines in Europe and North America. It also stimulated international debate and new research into psychological aspects of living with cancer.
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.
The findings of an innovative ethnographic study of Health Care Assistants (HCAs) who care for dementia patients were used to create a stage play, Inside out of Mind,which was performed to audiences of HCAs, NHS managers and the general public.
The performances raised awareness with NHS managers and healthcare policy makers, of the role and importance of HCAs; their working environment, the skills they need and the difficulties they encounter. It enabled HCAs to reflect upon their practice and to identify specific areas upon which they would focus to improve care.
Bangor University staff (Neal & Wilkinson) are core members of a collaboration whose research since 2003 has had significant policy relevance and impact in the field of primary care oncology. Impact has been made in three areas:
Researchers at the University of Leeds have designed and developed new approaches and technologies for cancer patients to self-assess their symptoms and quality of life. The work focused on electronic methods for collecting patient-reported outcome measures (PROMs), developing PROMs for neglected areas of patient care, and running trials of these techniques. These approaches produced sizeable patient benefits including improved symptom control and better quality-of-life. These findings have influenced clinical guidelines in the UK and Canada, NHS policy and the endorsement of PROMs in the Health and Social Care Act (2012). Electronic PROMs systems based on the Leeds research have been implemented locally, nationally and internationally, making measurable improvements to patient welfare and health, such as a reported significant increase in completion of chemotherapy treatment.