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The Personal Social Services Research Unit (PSSRU) at the University of Manchester (UoM) has run a programme of research examining community care of older people since 1996. The findings have informed key government decision-making around two important national policy initiatives between 2008 and 2013: (1) the development and implementation of Personal Budgets in Social and Health Care and (2) National Strategies to improve Dementia Services. This has affected the national provision of social care for older people and other adult social care users. In 2011-12, there were over 1.2 million people in England receiving social care affected by these policy changes (over 800,000 aged 65+), with a cost of £6,600m spent on their care (NHS and Social Care Information Centre).
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.
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 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.
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.
Our research has led to major changes in the management of people with severe mental illness (SMI) in general practice. Our findings that people with schizophrenia are at greater risk of cardiovascular diseases informed NICE guidance in the UK and international guidelines. The Department of Health's strategy on Mental Health was influenced by our work on the interface between physical and mental health. Recommendations in the NICE guidance have now been taken up by the NHS Quality Outcomes Framework (QoF) in England and Scotland. General practitioners are specifically required to monitor BMI (Body Mass Index), blood pressure, and glucose and serum lipids levels in all registered patients with SMI.
The issue of spiritual care is enshrined within both health and social care policy in Scotland. Both sectors often struggle to meet these needs. This impact case study relates to two unique initiatives arising from the research of Swinton that have sought to address this gap in knowledge and practice. The Kairos Forum for People with Intellectual or Cognitive Disabilities has focused on putting academic research into practice for issues relating to spirituality and intellectual disabilities. The Community Chaplaincy Listening Project has taken chaplaincy provision and spiritual care and extended it into the community. Together these initiatives have contributed to better practice in relation to healthcare (especially relating to mental health) and the lives of people with disabilities, for the NHS, churches and social care.
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.
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.