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picture of Heather Wilkinson Dr Heather Wilkinson
CRFR Co-Director
h.wilkinson@ed.ac.uk

Biography

Heather is Director of Research and Knowledge Exchange, School of Health in Social Science
and Co-Director of CRFR.

For further information please go to www.health.ed.ac.uk/staff/profiles/heather-wilkinson.htm

Dementia at the School of Health in Social Science


Research interests
I have several key areas of research interest within an overall focus on the experience of people with dementia and improving the care experience. My interests have developed from a focus on issues of inclusion and quality of life for people with dementia and for people with learning disabilities and dementia. Theoretically I am interested in models of inclusion and social justice for significantly marginalised groups and have been involved in Scottish Adults with Incapacity Legislation and reforms. I am actively involved in developing methods for including people with dementia in research and policy and I was a member of the working group that recently prepared the Scottish Dementia Strategy. This work also relates strongly to the increased focus on knowledge exchange and, in particular, the work of my Connect in Care and night time care projects have achieved a number of outcomes in this area. The increased successes in these areas
of work have allowed me to develop case studies around impact grounded in theories of knowledge exchange and more practically in relation to the forthcoming REF. I have involvement in a range of research grants and with different policy and practice groups. I am active in the fields of dementia, disability, gerontology and social policy at national and international levels.

Forthcoming publication

Out in print - summer 2011:

CL. Clarke, H. Wilkinson, J. Keady & C.E. Gibb (2011) Risk Assessment and Management for Living Well with Dementia. Jessica Kingsley, London.

The book is developed from several research projects done over the last decade.

Current CRFR projects

Improving the care of older people

Underlying my research career has been the aim of improving the care of older people through
developing better understandings of methodological and personal perspectives. This approach has
recently become a more visibly funded strand in my programme of work through the Connect in Care
project which is now in a dissemination phase based on a practice development pack and CDrom that
was developed to pull together the various strands of work from across the last 3 years (funders: NHS
Education for Scotland, NHS Quality Improvements Scotland, in partnership with the Scottish Care
Commission). This has provided a significant knowledge exchange, practice development and networking
opportunity. My contribution in the field of care for older people has also increased the profile of CRFR in
the area of families, relationships and older people and the profile of the School of health in Social
Science through my role in the development of the NHS Lothian NMHAP Framework for Career
Development.

Night time care


Publication available to order - Providing Good Care at Night for Older People


The night time work arose from a wider interest in improving the care of older people. A research project
funded by the Joseph Rowntree Foundation (JRF) has provided a wealth of material that is now being disseminated and worked with over two year period. This work has been funded by an additional £30,000
from JRF. The research findings uncovered an important area for practice development and some of the dissemination has focused on producing materials, including a set of posters and a postcard, as well as
a short piece of drama (‘Just checking’ with Forum Interactive) that has been used at dissemination events. The impact of this work has been, and continues to be, considerable at a policy and practice level.
The working group established towards the end of the project to involve representatives from each of the
UK care regulatory bodies resulted in significant changes and additions to regulation and inspection policy guidance/practice e.g. the Care Quality Commission (England and Wales) has adopted a checklist developed by the Working group for use by all care home inspectors. This in turn has influenced direct practice during the night in care home settings across the UK. Publications around this work are
particularly focused at practitioner and policy makers. A book drawing on this work will be published by Jessica Kingsley Press in October 2010 and will be launched at the major UK dementia conference.
I have also been asked to speak at a number of events and conferences on this topic.

Empowering people with dementia

Central to all my research over the last ten years has been the exploration of how to better engage and include people with dementia in research, policy and practice. The study completed for the Mental Health Foundation in 2000 was one of the first pieces of funded and published work to include people with dementia as research participants. My edited collection in 2001 was also a seminar piece of work challenging the exclusion from research people with dementia. Since then I have been heavily involved
in a number of funded projects, and in supervising post graduate students, where the work is centred on including people with dementia, thereby developing both theoretical and methodological understandings that have extended the scope and field of dementia research. I was the founder member of the Scottish Dementia Working Group which is now an independent organisation representing people with dementia
in Scotland. The most recent development in this area is my involvement in the NIHR Network grant held
by the University of Manchester on Dementia and Personalisation.

Aging with a learning disability


Building on my practice and research background in the field of learning disability, I have a body of work
that has developed over the last ten years that focuses on aging with a learning disability. Much of this
work has a particular health focus and an example of this is the current work funded by the CSO on access to acute care. I have extensive and longstanding international networks in the field of aging and learning disability including my role as co chair in IASSID and my visiting fellowship at the Institute for Basic Research on Developmental Disabilities, in New York. I usually spend time at this Institute annually, in
both a clinical and research setting, and have done for since 1999. I have a current JRF funded project
to develop a practice development pack (including a DVD) for front line workers and I am leading on
several collaborative grants now being developed in this research area.

Active grants

Dept of Health Healthbridge: national evaluation of the English Dementia Strategy Implementation
Sites (PI is Prof Charlotte Clarke, Northumbria University) April 2010 – Sept 2012

NHS Health Scotland Dementia Dialogues – a DVD for people with dementia April 2010 – March 2011

University of Edinburgh KE fund + NHS Lothian, Queen Margaret University and Napier University
funding to support a Bootcamp for research capacity development April 2010 – Jan 2011

ESRC Local Authority Programme ESRC Local Authority Programme - Engaging with Involuntary
Service Users in Social Work Oct 2009 – Sept 2010

NHS Lothian NHS Lothian extension to Joint Post Secondment 2009 – 2010

ESRC Engagement Event: Creating Innovative Exchange Across Dementia Theory,
Practice And Policy: Translating Dialogue And Experience (with Sarah Morton). Sept 08 - Sept 09

Edinburgh University Knowledge Exchange Creating Innovative Exchange Across Dementia
Theory, Practice and Policy. July 08 - July 09

Health Scotland and City of Edinburgh Council. 'Good Ideas': supporting care work for
housebound older people (based in COPA). Feb 08 - April 09

Scottish Government Review of the Nutritional Needs of Community Dwelling Older
People (based in COPA). May 08 - January 09

NHS Lothian/NES Joint post - knowledge exchange on values based practice.
May 08 - June 09

Burdett Trust for Nursing Research The development of an enhanced role for community
nurses working with people with an early diagnosis of dementia: a collaborative action research
project (Co grantholder with Dr Dot Weaks and Prof John McLeod, Tayside Institute for Health
Studies, School of Social and Health Sciences, University of Abertay). Feb 08 - June 2010
Read the summary
Read the Report

Chief Scientist Office Impact of the Learning Disability Liaison Services on health experiences
and outcomes of people with learning disabilities attending for general hospital care (PI with
Juliet McArthur, NHS Lothian). Feb 08 - July 09

Joseph Rowntree Foundation Dissemination of night time care project. Dec 07 - July 09

Joseph Rowntree Foundation Development of UK Care Commission Working Group
on night time care. April 07 - July 09

NES & NHS QIS with Care Commission Provision of learning and practice development
network across Scotland for nurses working with older people. Feb 07 - Jan 2010


Past CRFR projects

Northumberland Strategic Health Authority
August - December 2006.
Development of intranet materials on end of life care for people with a learning disability.

Joseph Rowntree Foundation
April 2006 - November 2007
Exploring night time care for residents of care homes

Centre for Integrated Healthcare Research
October 2005 - February 2007
A pilot evaluation of DISDAT pain tool in acute care settings for adults with profound learning disability.
(With Michael Brown, Consultant Nurse Learning Disabilities, NHS Lothian)

Burdett Trust for Nursing
February 2005 - July 2007
An international network to problematise 'wandering'.
(With Jan Dewing RCN & Prof Brendan McCormack, Uni of Ulster)

Community Fund
August 2003 - July 2007
Developing best practice for supporting people with learning disabilities with dementia to stay in their own homes.
(With CARE)

University of Northumbria
February 2005 - January 2006
To support an international network on aging and learning disability.

SHEFC Promising Researcher Scheme
April 2005 - July 2006
To spend 6 months in New York to develop existing international collaborations in the field of learning
disability and dementia.

University of Albany, USA
January - December 2005
A feasibility study exploring the use of PEG feeds in people with a learning disability and dementia.

Joseph Rowntree Foundation
July 2004 - October 2005
Pain Management needs of older people who have learning disabilities and dementia.

Joseph Rowntree Foundation
April 2004 - April 2005
Top Tips for Staff ProvidingSupport to people with a learning disability and dementia - an information pack.

ESRC Seminar series
April 2005
Ethics of Care: Implications for Research, Policy and Practice.
McKie L, Bowlby S, Hopkins D, Hughes B, Watson N and Wilkinson H