VOL: 97, ISSUE: 24, PAGE NO: 42
Moira Ingham, MSc, MA, is principal lecturer in practice development, Centre for Healthcare Education, University College, NorthamptonWhen it comes to knowing what it's like to be on the receiving end of nursing care, you can be sure that the patient has the best perspective of all. With this in mind, the Department of Health (1999a, 1999b) recommended increased emphasis on the public's involvement in nursing education programmes. It also suggested that health care users and patients should play a larger part in curriculum design and assessment, particularly assessing communication skills, partnership skills and ethics.
When it comes to knowing what it's like to be on the receiving end of nursing care, you can be sure that the patient has the best perspective of all. With this in mind, the Department of Health (1999a, 1999b) recommended increased emphasis on the public's involvement in nursing education programmes. It also suggested that health care users and patients should play a larger part in curriculum design and assessment, particularly assessing communication skills, partnership skills and ethics.
The idea is to encourage users of the health care system to get involved in the way nurses and midwives are trained and to participate in decision-making at curriculum level.
The two main ways to achieve this are participation and involvement. Participation is seen as an active process, drawing on partnership in a dynamic, democratic way, while involvement can include any point of decision-making at an individual or community level (Farrell and Gilbert, 1996). However, the culture of the NHS does not always promote involvement, far less participation, from patients, so there may still be barriers to be overcome.
The Northampton experience
A belief in patient involvement is central to the new preregistration nursing course at University College, Northampton (Mazhindu, 2000). The course development team has worked with Northamptonshire Health Authority to secure the participation of a range of patient groups to help in the design of the course. These groups have been able to highlight areas where they could participate in students' learning through workshops and practice exercises. They have also expressed strong views on the gulf between expert and patient, and how the balance could be redressed to incorporate patients' views.
Partnership was a key element in developing the curriculum and a core course development group was set up on this basis: each academic member of the group identified a partner who was either a practitioner, a student or a person who provided links with further education or liaison with patients and lay carers.
A user reference group was set up specifically for the curriculum project and worked with Northamptonshire Health Authority's public involvement manager to establish a process for patient involvement. The group is coordinated through the health authority and members come from a wide spectrum of patient and voluntary services groups, including Voluntary Voices Forum, Teamwork, Disabled Peoples' Alliance and Wellingborough Black Consortium. There is also a lay member of Nene Valley Primary Care Group and a patient representative of Northamptonshire Health Authority.
The patients who joined the user reference group brought with them considerable experience and expertise. They were particularly articulate on issues of patient care and provided a wealth of ideas for future development. They related how bad experiences can reduce trust and damage relationships with professionals, whom they felt needed to see the value of making time for patients, listening and not always assuming that they know best. One member commented that training had to incorporate an interest in the person and take account of factors such as culture, gender and disability.
Health care professionals must also recognise that the balance of power should reflect the patient's rights in relation to choices, empowerment and autonomy. Patients in the group felt that the approach taken to prepare nurses to work in partnership with patients should be likened to the principles of customer care.
Making partnerships work
The user reference group is an integral part of course development and delivery. Ahead of validation, each member of the group was given the chance to read and provide feedback on draft documentation for the different nursing pathways. This process ensured that their perspectives and views were applied to the course content.
The group also believes that it can contribute through narratives of members' 'lived experience', which is particularly valuable in planning enquiry-based learning methods.
Content related to these patients' perspectives addresses the nature of lay knowledge and explores the concept of partnership - how it enhances patient power and challenges professional power, and quality and accessibility of services - and the issue of patient rights and responsibilities.
Working in new ways with users
Workshops have been held for academic staff and practitioners to emphasise this particular process. The workshops covered national strategies instigated by the NHS/ENB and considered the impact that strategies such as clinical governance were having locally as a result of the input from patient/client councils. Throughout the workshops, facilitators used user comments (see box) to stimulate discussion.
The participants examined proposed strategies for patient involvement in students' training. The success of such an approach is dependent on supporting the patient fully in a teaching situation. This prompted the user reference group to develop ground rules for patient participation. It recommended that:
- A preparticipation visit should be arranged to brief the patient and complete a pro forma of needs;
- The patient must have must have come to terms with his or her disability, condition, treatment and related matters;
- The patient should relate his/her experience without becoming angry;
- The Centre for Healthcare Education needs to display a caring attitude and welcoming hospitality;
- A standard information pack should be created so that each participant is provided with practical information on the timing of sessions, group numbers and lecture environment;
- The centre must tell the user who recommended them;
- The user must be provided with feedback and support after participation, and further counselling;
- The facilitator/lecturer must be courteous and introduce himself or herself personally;
- Patient contributions need to be guided, and students' questions may also need to be guided to protect the user from 'no go' topics;
- Transport to and from the visit needs to be considered and the patients' expenses reimbursed.
The response to patient involvement in curriculum design and delivery has been extremely positive so far. While appreciating the short timescale for validation, patients felt that they had been able to contribute significantly to the user-focused nature of student training.
Members of the core development team found the presence of patients challenging initially, but working collaboratively has enhanced their network of contacts. Clinical staff have also been able to suggest patients who might be willing to participate in teaching. Student views of the initiative will be sought once they have attended a series of patient workshops planned for the spring term.
The way forward
It is likely that over time the remit of the user reference group will change from that of initiating patient networks and their involvement to that of monitoring the process of patient participation in the curriculum.
The group will also consider students' and patients' evaluations of the various strategies employed across the different nursing pathways, from enquiry-based learning, guided role play, patient workshops and input by patients to the multi-agency profile.
At the end of the foundation year, having evaluated these aspects, the group, together with the curriculum team, will review and advise on maintaining a patient focus for all branch programmes.
What is clear so far are the benefits that have been derived from working in partnership with patients and their commitment to the future education and training of nurses, midwives and other health care professionals.
- Part three in this series will describe innovative research to design a pre-entry curriculum leading to accreditation of prior (experiential) learning.