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
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.