University of Leeds
School of Healthcare Studies
Leeds Metropolitan University
School of Health and Community Care
Joint User and Carer Strategy
Report of the User and Carer Strategy Group
12th July
2003
Page
Contents
1
1. Membership
2
2. Introduction
2.1 Intention
2.2 Background
2.3 Commitment
2.4 Audit
3
3
3
4
5
3. Aim and Objectives
6
4. Realistic Strategies
7
5. Dissemination
8
6. References
9
7. Appendix 1:
Service User and Carer Involvement in the School of
Health and Social Care at Leeds Metropolitan
University
10
8. Appendix 2:
User and Carer Involvement in the Educational
Provision of the School of Health Care Studies,
University of Leeds.
12
9. Appendix 3
Action Plan Example for Strategy 4b
15
1
1. MEMBERSHIP
The User and Carer Strategy Group (UCSG) gained representation from School of Health Care
Studies, School of Health and Community Care, Leeds Metropolitan University, School of
Medicine, Leeds Teaching Hospitals NHS Trust, and users/carers.
Dr Peter Morrall, Chair, SHCS
Dr Fiona O’Neill, Lecturer, SHCS; SHCS user/carer co-ordinator
Sue Sherwin, Senior Lecturer, SHCC
Helen Quinn, Senior Lecturer, SHCS
Jerry Harris, Health Service user; Physiotherapist
Frances Chapman, Senior Lecturer, SHCC
Janet Hargreaves, Director of Clinical Practice, SHCS
Andrew Grice, Health Service user; Associate Lecturer, SHCC
Dr Amanda Kelsey, Senior Lecturer, SHCS
Barry Ewart, Medical Education Unit, SM
Lesley Pattenson, Head of Patient & User Involvement, Leeds Teaching Hospital Trust
Margaret Lascelles, Director of Learning and Teaching, SHCS
Key:
SHCS: School of Health Care Studies, University of Leeds
SHCC: School of Health and Community Care, Leeds Metropolitan University
SM: School of Medicine, University of Leeds
2
2. INTRODUCTION
2.1 Intention
The intention of the User and Carer (Health Services) Strategy Group (UCSTG) is to present a
viable programme for implementation over a defined period of time (i.e. the academic year
2003/2004) from which further long-term strategies can be developed. The implementation of
the strategy presented here requires the formation of another group (see section 4, subsection d)
to oversee the associated action for this strategy, and crucially to develop a culture of user/carer
focused educational and research programmes and practice.
2.2. Background
There is an unprecedented amount of activity aimed at improving and developing user and
carer involvement in order to support the move to a more open, accountable and patient-centred
NHS. The Health and Social Care Act (2001) places a legal duty on NHS organisations to
involve and consult patients and the public in the planning and development of services.
Moreover, the rapidly changing relationships between health professionals and users and
carers, in which there is an increasing emphasis on sharing power is also leading to new models
and processes for involving patients such as the 'Expert Patient' programme and models of
shared decision making. The growing importance of community based approaches to health
and health care that build and foster close connections with local communities and voluntary
sector groups is also a significant element of this move. The role of health services is just one
element in models of health and health care that emphasises the social context of health care
and the importance of agencies, such as Social Security and Housing, that all contribute to
health.
Within this rapidly changing climate, it is essential that education, training and research also
change. All members of the NHS workforce must progress towards possessing the attitudes,
knowledge, skills and abilities to enable them to make a positive contribution to the
development of user/carer involvement, with the ultimate goal of working in partnership with
users and carers.
A project funded by the West Yorkshire Development Confederation to look at ways of
involving service users and carers in the development and delivery of pre-registration education
for nurses/midwives has laid the foundations for developing a strategic approach to
involvement for education providers in Leeds (O'Neill, 2002). This project looked at existing
involvement activities in professional education in Leeds and elsewhere and identified a
number of principles that should inform future developments:
1. User and carer involvement should be given a higher and more visible priority in the
education of health professionals as part of the current policy agenda to improve the
quality, responsiveness and accountability of health and social care provision and to
prepare students to work in more collaborative ways.
2. In order to extend and develop involvement, there has to be investment and a strategic
approach to support the development of a culture, systems and support across
professional and organisational boundaries that values service users and carers and
enables their involvement in educational and research activities.
3
3. Patient and service user involvement should be developed with a focus on opportunities
for inter-professional education and research.
4. A system of payment or other recognition of the investment of time and expertise that is
acceptable to all stake-holders is a pre-requisite for the development of successful
involvement. This should tie in with the arrangements followed by other agencies in
Leeds for payments to service users and carers and also be acceptable to people who are
in receipt of benefits.
5. There needs to be a collaborative approach to the development of involvement across
the University community in Leeds. Isolated approaches run the danger of contributing
to the fragmentation that already exists and will inevitably result in the replication of
work and a sense of ‘competition’ between education providers for the time and
expertise of users and carers.
6. The work of the Community Education Development Officer in the Medical Education
Unit at the School of Medicine provides a model of how to build collaborative
relationships with community based groups and advocacy organisations. This model
could be extended to include other education providers. This would foster interprofessional education as well as provide a more organised and unified approach in
building active alliances with community and patient groups.
7. Closer and more established links should be made with the developing activity around
involvement in NHS and Social Care organisations, the local authority and the
community involvement framework in Leeds.
8. The training and development needs of people who may wish to be involved in
professional education should be taken into account. Any training provided should link
up to the network of training around lay involvement that is developing in Leeds and
should operate from an empowerment model. The training and development needs of
staff should also be taken into account.
9. A range of methods should be developed and involvement included at stages of
curriculum planning, delivery, assessment and evaluation.
10. Users and carers should be included in a group set up to co-oordinate and develop
involvement at a strategic level.
11. New approaches should be evaluated from the perspective of users and carers as well as
students and University staff.
The work of the joint strategy group has built on these principles and there is visible
commitment and support from stakeholders within the Universities and in the local health
economy to take the strategy forward.
2.3 Commitment
This strategy is shared between the School of Health Care Studies, University of Leeds, and the
School of Health and Community Care, Leeds Metropolitan University. Consequently, this
strategy represents the approach taken by the two main health service education providers
(nursing and some allied health professions) in Leeds. Underlining a commitment to interprofessional collaboration, the strategy also includes input from the Medical Education Unit of
the School of Medicine, University of Leeds.
4
The School of Health Care Studies’ (University of Leeds) ‘Five Year Strategic Plan for
Learning and Teaching’ (2003) includes an express undertaking to ‘involve users and carers
with learning and teaching activities’. It is recognised that the School of Health and
Community Care, Leeds Metropolitan University already has put in place formal structures and
procedures for user/carer active participation in its educational provision (see Appendix 1).
2.4. Audit
A formal audit of current user/carer involvement within the School of Health Care Studies has
revealed a high level and wide range of activity (see Appendix 2). This strategy is designed to
co-ordinate, encourage and increase this good work both in the School of Health Care Studies
and in other educational institutions. Underlying the strategy is the recognition of the need to
foster and support links between educational providers in order to develop effective and
innovative approaches to the involvement of users/carers.
5
3. AIM and OBJECTIVES
Aim
To enhance User and Carer involvement in research, educational health and
social care provision and practice within Leeds.
Objectives
(i)
(ii)
(iii)
(iv)
(v)
To ensure that User/Carer contact within educational providers is
mutually beneficial.
To be pro-active in increasing effective and genuine User/Carer
involvement in educational provision.
To provide mechanisms for appropriate remuneration for User/Carer
involvement, and adequate resources (for example training,
administrative support).
To produce realistic, visible, achievable and timely strategies to achieve
meaningful User/Carer involvement in educational provision and
research.
To `culturally embed’ User/Carer involvement within educational
organisations.
6
4. REALISTIC STRATEGIES
a) To develop a fair, workable, creative and responsive system to reward and
acknowledge the investment of time and expertise by users and carers in educational
activities. This system should be flexible and acceptable to all stakeholders
including the University finance procedures and users and carers who may be in
receipt of state benefits.
b) To put systems in place so that patient satisfaction data includes information
regarding students in training, thus informing the process of quality assurance in
student placements and developments in educational provision. It is essential that
user and carer involvement permeates all levels and areas of educational provision.
Exceptionally, there may be justification for the omission of direct involvement of
Users and Carers, for example, in the delivery of specific modules. However nondirect involvement should still be feasible.
c) To include User and Carer involvement statement(s) in programme planning,
development and evaluation documentation and quality assurance processes.
d) To install a multi-agency group to co-ordinate User and Carer activities and to
appoint a facilitator for this group. The rationale for the group is to implement and
oversee user and carer activities within the School of Health Care Studies and
will include representatives from other education providers and the wider health
economy.
e) To develop and formally adopt a clear, consistent and acceptable system of
empowering language in all relevant written and verbal communication.
f) To hold regular events to disseminate involvement initiatives amongst academic
staff thereby encouraging networking and sharing of knowledge and expertise (the
first of which should take place in 2003).
g) To ensure that overall responsibility for the implementation of user and carer
involvement is owned at executive level.
It is essential that specific action is designated to each strategy by the multi-agency
group to ensure implementation is effective. An example of an Action Plan is
provided (for strategy 4b) in Appendix 3.
7
5. DISSEMINATION
Drafts of the strategy have been circulated to the following for information/feedback:
(i)
West Yorkshire Workforce Development Confederation (Mental Health Resources
Sub-Group).
(ii)
Leeds Patient and Public Involvement in Health Group.
(ii)
Joint Strategy Board for Health - Leeds (Peter Noble, School of Medicine,
University of Leeds).
(iii)
West Yorkshire Workforce Development Confederation/University of Leeds
Review Group.
We recommend that the strategy is disseminated to:
(i)
West Yorkshire Workforce Development Confederation.
(ii)
Leeds Patient and Public Involvement in Health Group.
(iii)
Leeds Teaching Hospitals NHS Trust; Leeds Community Mental Health Trust.
(iv)
Leeds Primary Care Trusts (5).
(v)
Local Authority Overview and Scrutiny Committee.
(vi)
Throughout the Faculty of Medicine, Dentistry, Psychology and Health, University of
Leeds.
(vii)
Learning Disability: Adult Learning Commisioners; Learning Disability Business
Group.
(viii) South West Yorkshire Mental Health NHS Trust - Wakefield User and Carer Forum
(P.A.L.S).
We also recommend (see section 4 sub-section f) that a dissemination event is held to launch
the strategy and mark the commencement of the implementation phase.
8
6. REFERENCES
1. O’Neill F (2002) Developing a Strategic Approach to Users and Carers Involvement in
Pre-Registration Nursing and Midwifery Education in Leeds. Leeds: School of Health Care
Studies, University of Leeds.
2. School of Health Care Studies (2003) Five Year Strategic Plan for Learning and Teaching.
Leeds: University of Leeds.
3. Department of Health (2001) Health and Social Care Act. London: HMSO.
9
7. APPENDIX 1: Service User and Carer Involvement in the School of Healthcare and
Social Care at Leeds Metropolitan University
The School of Health and Social Care (HSC) at Leeds Metropolitan University (LMU)
incorporates three professions:
1. Health Promotion and Education
2. Social Work
3. Nursing
Some courses are jointly developed and run by more than one of these professional groups.
Such provision will be referred to as `joint provision'.
The involvement of each professional group is as follows:
1. Health Promotion
Service User involvement can be referred to as `Community Involvement' since in terms of
health promotion, `users' are the community. Staff in the HP team have been involved in
developing an audit tool to assess the involvement of communities in health promotion
projects.
This team is also involved in a range of user groups, the School Head (Rachel Dixey) being
vice chairperson of the Yorkshire Cancer User Partnership Group.
One of the Senior Lecturers from the HP team is currently carrying out a piece of research on
user-led health education.
2. Social Work
The service user and carer input is developed throughout the programme. Service users and
carers do guest sessions on some modules.
Service Users are involved with the students during their practice placements and give verbal
and written feedback regarding the student's performance in placement. This feedback is sent
to the student, the practice teacher and can be seen by the external examiner.
The degree for Social Work is currently being written and Service Users and Carers have been
regularly consulted throughout this process.
The social work group have also developed strong links with Service User led voluntary
agencies such as Touchstone, the Family Service Unit and Barnados. These are used as
practice placements for students
3. Nursing
Service Users and Carers are part of the curriculum management team and have strongly
influenced the design of the degrees in nursing, particularly the degree in mental health nursing.
There are currently two Service Users who are appointed as associate lecturers. They are
involved in teaching planning, delivery and evaluation, and also are part of the assessment
group for student work in mental health.
10
There is a Service User and Carer week at the commencement of the Mental Health branch,
during which time students receive lectures, seminars and tutorials exclusively from this group.
The modules for working with Older Adults for both Adult Health and Mental Health are
strongly supported by Carers and Carer groups both in delivery and planning.
The interview profile for mental health nurses was developed via a Delphi survey on Service
User accounts of what a mental health nurse should do.
4. Joint Provision
The joint provision includes two courses: The Certificate in Mental Health (Cert.MH), and the
diploma/degree course in Psycho Social Interventions (PSI).
Both courses have Service Users and Carers on the curriculum management teams, and both
courses incorporate teaching sessions from Service Users and Carers.
The PSI employs one associate lecturer who is a Service User involved in teaching and
assessing.
The Cert.MH is a one-year part-time course originally available to people working in health
and social care services, either statutory or non-statutory. Last year monies were made
available to fund some places for Service Users and Carers on this course. These places were
taken up and the first Service Users and Carer are due to successfully complete the course this
summer.
11
8. APPENDIX 2: User and Carer Involvement in the Educational Provision of the School
of Health Care Studies, University of Leeds.
1.
TEACHING OF MODULES/PROGRAMMES
a)
b)
c)
d)
Disability workshops (Diploma in Higher Education (Dip HE), Learning Disability).
A User/Carer day is planned for the 3rd year new Dip HE.
Patient/family-centred models/resources as basis for teaching.
Visiting lecture by clinical psychologist involved in Quality of Life (QOL) assessment
and research.
Service Users are invited to do sessions in the Dip HE Acute Mental Health module.
'Male survivors of sexual abuse' and 'self help and empowerment' in the Therapeutic
Approaches I module in the new Dip HE.
Patient experience of transplantation
Health Needs Assessment module has a significant focus upon consumer involvement.
Series of Autism Awareness workshops in conjunction with West Yorkshire Learning
and Skills Council.
University of Leeds Website to be developed on Autism Awareness and Services in
West Yorkshire.
Users and Carers are invited from a range of groups (such as Black Mental Health
Forum, Disability, Gay and Lesbian, Women/Men's Health) to participate in workshops
with the pre-registration students on all branches on the Dip HE/Advanced Diploma.
Carers take part in the Post-graduate Diploma in Nursing (Adult and Mental Health).
Parents co-facilitate sessions in paediatric modules (for example, children's
neuroscience).
e)
f)
g)
h)
i)
j)
k)
l)
m)
2.
PLANNING, DEVELOPMENT AND EVALUATION OF MODULES/
PROGRAMMES
a)
b)
User involvement in the development of the new Cardiology programme.
Users will also contribute in the delivery of one module during year 3 of the 4 year
Cardiology programme.
User is to be invited to join the Programme Management Group (new Cardiology
Programme).
Theme in planning and in use of resources (Macmillan Education Unit).
Key theme in work with the Macmillan charity - information services, helplines, user
reference group.
Essential consideration in new programme development (for example, recent BSc
Cancer Care involved review by user/carer representatives).
Users input in the Stress and Vulnerability module and the Case Management module
as part of the Post-graduate Diploma in Nursing Programme (Mental Health).
c)
d)
e)
f)
12
3.
CLINICAL PRACTICE
a)
School of Healthcare Studies and Leeds MIND to run a half day training session on
issues surrounding medication.
A theme in interactions with specialists in cancer and palliative care.
Clinical Practice link with MIND day centres which includes service users.
Patient assessment, management and research.
Kidney Alliance: involves patients as a political voice for resources for care.
User involvement is captured within the National Database for Primary Care Groups
and Trusts.
Users and Carers are involved in the Practice Development Unit Accreditation
Programme (Centre for the Development of Nursing Policy and Practice).
Parents during clinical placements of students from child-branch.
Development of a process for embedding feedback from users and carers on the impact
of student placements on their care into the overall evaluation of students presence in
clinical practice.
b)
c)
d)
e)
f)
g)
h)
i)
4.
RAISING AWARENESS AMONGST STUDENTS ABOUT USER/CARER
INVOLVEMENT IN THE HEALTH SERVICE
a)
b)
c)
d)
e)
User/Carer involvement taught in the module Introduction to Clinical Governance.
Workshops in workbased learning modules across branches.
Through discussion of User/Carer issues with students in the classroom.
Core theme in teaching, support and supervision.
Raising their awareness about `educated public' and Government priorities which will
affect practice.
Client/user-centred philosophy underpins teaching.
Display of MIND posters, annual reports and documents on mental health student
noticeboards.
Discussion on patient decision, informed choice, patient education, treatment outcomes
that are influenced by patients. Political activity of patient groups., e.g National Kidney
Patient Area (NKPA), Kidney Alliance, Renal National Service Framework (NSF),
local kidney patient associations, British Renal Association has patient representation.
Awareness raised in Difference, Diversity and Professional Practice Module, Cultural
Diversity Module, Enhancing Communication Module, and the Case Management in
Nursing Module.
f)
g)
h)
i)
13
5.
RESEARCH
a)
User/Carer involvement is increasingly expected by funding bodies in the design and
carrying out of research, as well as in the dissemination of results. For example, the
Economic and Social Research Council (ESRC) has specific categories in its
application forms covering these areas.
Specific research undertaken on User/Carer involvement (for example, funded by the
Department of Health).
The prospect of User/Carers generating research questions.
Pilot-study evaluation of User/Carer participation in `shared learning' (mental health):
publication in press.
Pharmacy Practice are:
(i)
involved in a joint research project with Royal National Institute for the Blind
(RNIB), with a user on the steering group;
(ii)
conducting a systematic review of written information and medicines with a
patient consultant on the team.
b)
c)
d)
e)
14
Aim: to put systems in place so that patient satisfaction data includes information regarding students in training, thus
informing the process of quality assurance in student placements and developments in educational provision.
(It is essential that user and carer involvement permeates all levels and areas of educational provision. Exceptionally
there may be justification for non-involvement of users and carers, for example, in the delivery of specific modules.
However, non-direct involvement should still be feasible.)
This action plan is necessarily limited at the moment as insufficient information is known about the groups who may be willing to be involved.
Initial enquiries suggest that many of the User and Carer groups are in their infancy which is good in that we may be able to embed student
information right from the start, but it means that we are dealing with an unknown quantity. These three stages are a suggestion of the way in
which the strategy can be developed. Stage one is about 50% complete at time of writing (May 2003).
Stage:
One: Identify
possible sources
of feedback in
Leeds
Actions
a) Compose letter of introduction
b) Use expertise and local knowledge of the Users and
Carers strategy group to identify an initial mailing list
c) Send exploratory letter
d) Construct database from responses
a) Profile each response
b) Establish ways in which feedback could be collected
(via satisfaction surveys, focus groups, web etc)
Two: develop a
flexible set of
methods of
receiving
feedback
Three: establish a This to include:
project plan
a) Processes for managing User and carer feedback
b) Ensuring that feedback is delivered to the right place,
acted upon and reported back - a closed loop
15
support
From Users and carers group
timescale
August 2003
From Users and carers group
Dec 2003
From team of colleagues
From Users and carers group
From team of colleagues
To be
determined
9. Appendix 3
Action Plan Example for Strategy 4b
Users and Carers Strategy