To the Editor: Oldroyd et al provide some revealing views of general practitioners on the many difficulties and few rewards arising from their care of chronic disease patients.1 As co-researchers in a participatory action research inquiry, exploring how nine of us living with Type 2 diabetes can better manage our condition, we read the article with interest and wish to give our perspective, as patients, on the issues addressed.

Oldroyd et al report that many GPs describe chronic disease management as a “burden”. We are only too aware of this negative response when we present with our chronic conditions. GPs are usually our first, and often only, regular contact with the healthcare system. Although we would like to rely heavily on them, we rarely find they have enough time for us. The standard consultation is barely long enough for renewal of our prescriptions. Yet, for a couple of us who have recently wanted extended assistance, the situation has been exacerbated when our GPs have resisted specialist referral, on the assumption that their care is sufficient.

The article reports the conflict felt by many GPs concerning implementation of clinical management guidelines, many of which they felt were not feasible in their everyday practice. Again, we share the discomfort this brings when we are informed of the guidelines, yet know that they do not fit with our own personal situation. We would dearly love more collaboration and negotiation in developing workable solutions best suited to our own unique circumstances. As one of us states, “none of those clinical, scientific studies can possibly be as long, complex and complicated as real life”. We believe we have accumulated a considerable amount of experience and knowledge about living with diabetes, and feel disappointed that our experience is not considered of value.

It is apparent that we share the same goals as GPs in seeking effective chronic disease management, but the different knowledge bases and perspectives of doctors and patients have not coalesced. Involvement in this current participatory inquiry has given us the confidence to speak out and to propose that, as patients, we should become legitimate members of the treatment team. We await an invitation to be part of the process in implementing initiatives.