Introduction Equity and excellence: Liberating the NHS (2010) states that new modes of care delivery must be explored for patients with long term conditions (LTCs). Increasing the proportion of people with a LTC to self care is a Quality Indicator and High Level Outcome in the Health and Well Being Strategy. The increasing focus on self care and reduction in inappropriate outpatient appointments are key priorities in commissioning services. The role of self management in IBD has been established but patient perceptions of self management programmes need to be addressed when implementing new modes of care delivery.
Methods The aim of this study was explore patient perceptions of self management as part of a follow-up care model. 24 in depth qualitative interviews were conducted, 18 patients had Crohn's Disease, six ulcerative colitis, age range 27–72 yrs. Disease duration range was 2–40 years. Patients were asked about self management, participation in self management programmes, open access appointments and the value of their hospital appointments when well. Thematic analysis of interviews was undertaken using NVivo 9.0.
Results No patients were enrolled into a self management programme. Only two had heard of self management. Four clear groups of patients perspectives of self management emerged: (1) patients who embraced the concept of self management and questioned why they had not heard of it prior to the interview; (2) patients who dismissed self management and could perceive no advantages to it, would not take “responsibility for their body”; (3) patients who were willing to embark on a programme with the caveat that if they could not manage, they could revert back to the traditional care system; and (4) patients who required more knowledge about their illness and body response before considering self management. All patients were concerned about open—access and a fear of not “getting in” when needed. This led to an unwillingness to accept this yet all but one of the 24 patients stated that, when well, their hospital appointment was often a waste of their time and the healthcare professionals' time.
Conclusion Integrated care pathways for patients with inflammatory bowel disease should be responsive to their clinical needs, be feasible and acceptable to those delivering and receiving care. When designing new modes of care delivery, consideration must be given to the group of patients that will not, or cannot self manage. Patients also appear to lack confidence in new modes of care delivery. Re-building this confidence is vital to the successful implementation of integrated care pathways where there is an element of self management.
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