Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from ‘this sickle cell life’ research

摘要

Participants told us their requests for pain relief were not treated as urgent (O4) and that they felt “ignored” and “abandoned”. They said they were often asked to wait, were given excuses (e.g. staff being busy), or were questioned about the degree of pain they were experiencing. Participants talked to us about how important it is to act quickly during painful SCD episodes because of the extreme pain and other negative physical consequences of having to wait for pain relief; they told us that the stress of waiting also made the pain more acute and made it less likely that the subsequent dose of pain relief would work. Some participants perceived delays to be caused by staff being busy. Others, however, attributed delays to staff scepticism about their pain experiences. These participants told us they felt judged and misunderstood. Some said they felt that they were perceived to be liars or “drug addicts” (O1). I6 said he overheard nurses talking about his pain not being that bad (“he just wants some morphine”) but he did not complain about it, because “when you need help […] you just accept it”.