“No one wants you” – a qualitative study on the experiences of receiving rejection from tertiary care pain centres

Abstract

Abstract Background and aims Four out of 10 referrals to tertiary care pain centres in Norway are not granted pain centre treatment, confirming earlier research on that this group of patients struggle to access the highest standard of care. Still, no study investigating how people with chronic pain experience rejections from pain centres was found. The aim of the study was therefore to investigate how people with chronic pain experience receiving a rejection from tertiary care pain centres after being referred by their general practitioners (GPs). Methods This was a qualitative study with semi-structured individual interviews with 12 persons, seven men and five women, rejected from the four different pain centres in Norway. The data were analysed thematically using systematic text condensation. Results The pain centre rejection created strong reactions, partly because the rejection was perceived as a refusal from the health care system as a whole. This was especially so because the pain centre was regarded as the last remaining treatment option, and given the rejection, they were now declined help by the experts in the field. Even though some informants had received an explanation for why they had not been granted pain centre treatment, a prominent experience was that the informants found it difficult to understand why their referral had been rejected given the severity of their pain. The incomprehensibility of the rejection together with a feeling of lack of future treatment options, increased the hopelessness and frustration of their situation and made it challenging to move on and search for help elsewhere. Conclusions The experiences with the pain centre rejections indicate that the rejection can have grave consequences for each individual in the following months. An improved system for how to handle expectations towards referrals, including prepare for the possibility of rejection and how to follow up a rejection, seems warranted. Implications Because a pain centre rejection most likely is received by persons in a vulnerable position, there should be available health care services to help them understand the rejections. And furthermore, help them to move from disappointment and hopelessness, towards an experience of empowerment and reorientation, by for instance planning further actions and interventions, and thereby, acknowledge their need for help.