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We write as a person living with sickle cell disease (MA) and a haematology registrar (SH) responding to the No One's Listening parliamentary report. The report identifies the importance of addressing low awareness of sickle cell disease among healthcare professionals and negative attitudes towards sickle cell patients. We suggest one powerful way to do this in practice is to create opportunities for people living with sickle cell disease to teach clinical staff about the condition directly.
We delivered a session together for the staff in an acute medical unit, starting by drawing out elements of Mary's life that are not defined by being a person with sickle cell disease (such as professional background and interests). We then moved on to discussing the condition itself: Mary described her experiences of acute and chronic pain, other complications of the disease, and the widespread impact they have on her life. Finally, she recounted different experiences of the healthcare system, with stigma and misunderstanding faced at every step. During the question time, one junior doctor bravely raised her hand to apologise for the way she had previously understood and communicated with patients with sickle cell disease. Following this session, we made a set of videos for the British Society of Haematology (1) in which Mary shares her experiences of pain, of uncompassionate care, and of how healthcare professionals can do better.
Addressing the deep issues identified by No One's Listening will require improved clinical knowledge and theoretical understanding, but they also require an enlargement of imagination and empathy, and a recognition of our shared humanity. Giving space and opportunity for clinical staff to learn directly from people with sickle cell disease may be one of the most powerful ways to achieve this.
Making space to learn directly from people with sickle cell disease
Dear Editor
We write as a person living with sickle cell disease (MA) and a haematology registrar (SH) responding to the No One's Listening parliamentary report. The report identifies the importance of addressing low awareness of sickle cell disease among healthcare professionals and negative attitudes towards sickle cell patients. We suggest one powerful way to do this in practice is to create opportunities for people living with sickle cell disease to teach clinical staff about the condition directly.
We delivered a session together for the staff in an acute medical unit, starting by drawing out elements of Mary's life that are not defined by being a person with sickle cell disease (such as professional background and interests). We then moved on to discussing the condition itself: Mary described her experiences of acute and chronic pain, other complications of the disease, and the widespread impact they have on her life. Finally, she recounted different experiences of the healthcare system, with stigma and misunderstanding faced at every step. During the question time, one junior doctor bravely raised her hand to apologise for the way she had previously understood and communicated with patients with sickle cell disease. Following this session, we made a set of videos for the British Society of Haematology (1) in which Mary shares her experiences of pain, of uncompassionate care, and of how healthcare professionals can do better.
Addressing the deep issues identified by No One's Listening will require improved clinical knowledge and theoretical understanding, but they also require an enlargement of imagination and empathy, and a recognition of our shared humanity. Giving space and opportunity for clinical staff to learn directly from people with sickle cell disease may be one of the most powerful ways to achieve this.
1) https://b-s-h.org.uk/education/lectures-and-videos/patient-perspective-t...
Competing interests: No competing interests