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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.
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.
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.
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.
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.
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.
A decade of research at the University of Southampton has given thousands of people around the world suffering from dizziness and balance disorders access to a self-management resource that can alleviate their symptoms. Professor Lucy Yardley has pioneered the use of a Balance Retraining (BR) booklet to transform the means of delivering cost-effective, life-changing treatment previously offered to less than one in ten UK patients. The booklet, translated into several languages, has been distributed to patients and practitioners as far afield as China and Japan. Yardley's findings have contributed the bulk of good quality evidence to the Cochrane Review on vestibular rehabilitation.
Dialysis has revolutionised the management of End Stage Kidney Disease (ESKD), but the benefits of this invasive, demanding treatment may not be clear-cut for elderly, frail patients with other serious comorbidities. University of Hertfordshire and East and North Hertfordshire NHS Trust researchers have led the development of Conservative Management, an alternative to dialysis for some patients, providing multidisciplinary support and careful symptomatic management until death. The research shows that quality of life is maintained, survival may not be significantly compromised, and preferred place of death is more often achieved than for counterparts on dialysis. Conservative Management programmes have been adopted across the UK and elsewhere, influencing the care of many patients.
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.