How was it for you? Patient perspectives on diabetes education

This government’s strategy for the NHS has increased the focus on service users’ involvement in their own care. The rationale statement for Standard 3 of the NSF for Diabetes states:

‘Users of the NHS should have choice, voice and control over what happens to them at each step of their care, empowering people with long term conditions in their relationships with health and other professionals enables them to assert control over their lives, build confidence and be active partners in their care.’ (DoH, 2002)

The introduction of the expert patient programme (DoH, 2001) should see the development of structured education programmes led by lay people. The disease- specific element should enable people with diabetes to lead the programme in terms of content and facilitate discussion among people who have been newly diagnosed. These programmes will supplement existing educational resources and refocus the relationships between healthcare professionals and patients. It is anticipated that the programmes will be independently evaluated. I also believe they could provide an opportunity for local healthcare professionals, attending such programmes as an observer, to gain further insights into the needs of patients in diabetes education. The emphasis on user involvement should not be underestimated or ignored.

How can patients get involved?
There are many ways in which we can ascertain patient views about service delivery and educational programmes. Two common approaches are patient evaluation of educational programmes and focus groups.

There are many examples of patient evaluations of educational programmes, particularly in terms of increased knowledge, improvements in metabolic outcomes and quality of life. These evaluations often appear to concentrate more on the outcomes of the educational programme rather than the process. Cooper et al (2002) in their article describe how focus groups provided them with this information and an opportunity for participants to reflect on their experience. In particular, the authors stated that ‘learning through reflection involves patients resolving the contradictions between what they currently do and what is desirable healthcare behaviour.’ Acquiring qualitative data on patients’ experience of any educational programmes is essential in order to improve subsequent events. However, I was unable to find any articles that described how patients’ views were ascertained and used to inform the development of any educational programmes, I would be pleased to hear that I have missed something in my search!

Reflections on patient education
The articles included in this supplement are articulate reflections on patient education. Gill Kester taught diabetes to pre-reg student nurses in the late 1980’s, and early in 1990 she was on the curriculum planning team for the A05 – an advanced diabetes course for nurse specialists. I first met Gill during this time, her lecture on glucose homeostasis was memorable and in many ways inspiring. I, for the first time, understood the complexities of the control of blood glucose; this lecture has stayed with me to this day. In 2001, Gill was diagnosed with type 2 diabetes and suddenly found herself in the position of experiential learner; her understanding of type 2 diabetes could not be questioned. However, she acknowledges her reaction to the diagnosis, particularly the psychological effects, led to a step learning curve.

Gill in her article reflects on the process of education and asks us to consider whom the teachers should be and where such education should be provided. Gill acknowledges the lack of evidence that education improves self-management but suggests the outcome may be worse in those patients who have received no education. William Graham in his article describes his experiences of structured education programmes, acknowledges his 25 years of ignorance and how the type 2 diabetes education workshop enabled him for the first time to understand the effect diabetes was having on his current and long-term health. He also reflects on how the approach of the healthcare professionals he sees is crucial to the success of such workshops. Patient narratives provide a powerful insight, both articles I hope will encourage readers to reflect on patient perspectives of diabetes education and encourage us to consider ascertaining these perspectives in developing educational programmes and resources.