Involving and allowing service users choice in their own care and hence recovery is at the centre of policy initiatives aimed at improving quality of care. This principle is enshrined and prioritised in healthcare. Despite this and the literature produced by user and carer groups which advocate that involving users and carers in care planning is fundamental to improving the quality of care, there is substantial evidence that many users and carers are marginalised and removed from the care planning process.
A potential barrier to involving service users within planning services may be their limited baseline knowledge regarding mental health conditions and the terminology used to describe treatments and services. Limited understanding of research and research terminology which provides the underpinning reasons for commissioning a service may also be a barrier. Manchester University have developed and delivered a successful research methods course for service users and carers.
Aims and objectives
- To enable service users and carers to actively become involved in the development of research.
- To equip service users and carers with confidence in engaging with research and health leaders.
Reasons for implementing your project
This training course aimed to build the capacity of service users and carers by providing a tailored training course on research methods. The aim of the training was to ensure that users and carers informed the research process and fully engaged in the development of a programme grant. Following the course the aim was for the service users and carers to go on and contribute to the planning, implementation and evaluation of service improvement.
How did you implement the project
Advertisements were widely distributed via two NHS trusts (Manchester Mental Health and Social Care Trust & Nottingham NHS Trust) and local user & carer groups. A single page application form was devised to capture recent lived experience in mental health services and preferably of care planning. From 25 applications, 13 candidates were short listed and invited to interview (9 Manchester, 4 Nottingham).
Training development and content:
A 6 day course delivered 1 day a month for 6 months was developed and delivered at the University of Manchester. Each day was divided into four 50 minutes sessions, two in the morning, and two in the afternoon. The course was pitched at Masters Level and delivered using a blended learning approach including lectures, large & small group formats and online resources. Masters level training was felt to be necessary to engage participants fully in the research and service planning process following the course. A key challenge was locating educational materials which both met the requirements of this level yet remained accessible to lay readers.
Sessions were delivered by those who taught research theory and methods within their specialist area at the university. Homework exercises were internally developed for use between sessions and drew on key mental health and health services literature relevant to each research topic.
Day 1: Orientation to the grant & the University of Manchester, IT and study skills refresher;
Day 2: Understanding the research process & developing research questions;
Day 3: Literature searching & critical appraisal;
Day 4: Qualitative methods;
Day 5: Quantitative methods & health economics;
Day 6: Ethical conduct, training evaluation and grant development discussion.
Positive messages emerging from the feedback included the experience of being on a course which promoted learning, validated previous experiences, improved confidence and provided opportunities. Value was also afforded to the added extras (e.g. food, support, recordings & printing), the regularity of the breaks provided, engaging & interesting academic staff and the genuine involvement of service users/carers. One of the key messages that came through from the group was the view of being treated as an equal amongst health professionals (a new experience for many of the group).
For future courses a number of suggestions were made to improve the course including: overcoming IT delivery problems, providing more resources in advance, and increasing inclusion in the university. Requests were also made for opportunities to discuss health/wellbeing in a contained manner so as to prevent tangents during training, and to discuss issues about the training endpoint and further opportunities for the group.
Service users and carers who attended the course have gone on to influence NHS mental health services after completing the training program. For example Manchester Mental Health and Social Care Trust have incorporated a physical health check tool to be used with all mental health patients as a result of a service user/carer suggestion. Another service user has applied and has been successful in recruitment as lay member on a GP commissioning board. This course has been cited as an exemplar of good practice by the MHRN and NIHR.
Key learning points
Most participants had days when their mental health influenced their learning, and this required some additional input. However the course was developed from a normalisation stance which aimed to make the application and process like any other university course. The maintenance of this principle was important to both participants and trainers.
Training was resource intensive, and required 2-3 trainers per session to facilitate small group learning. All trainers commented on the enthusiasm of the participants, and their course commitment, demonstrated through the completion of all homework activities and learning beyond the mandatory content, i.e. by visiting the library to find out more.
Trainers identified a number of value added components including the resolution of remuneration to enable cash payments, provision of lunches & refreshments, and the development of learning materials in a variety of formats. Notably, they also reported the course to provide a valuable opportunity for their own development, increasing their self-confidence in engaging with service users and initiating feedback to suggest how certain training elements (e.g. health economics) could most effectively be delivered to other non-technical audiences in alternative settings.