The difference that KLS staff can make #7
Published on 23 May 2023, by Gill Young
Use of technology, KLS research, Health literacy
Post from a HEE supported student on the UCL Health Module about anti-racism and health information.
From students on the Health Librarianship module for Library and Information Studies at University College London (UCL).
As part of their assignment, we asked the students to write reflective pieces looking at a topic they had enjoyed from the course. Here is a fourth piece for you to read.
Anti-racism in health information
In Britain we live in a society where provision of healthcare information is biased towards the white population. Therefore, to ensure health information is equally available to all a deliberate anti-racist stance must be taken. As a lens to consider the importance and impact of anti-racism I am going to be focussing on the condition of sickle cell disease. This is an umbrella term for a “group of inherited health conditions that affect the red blood cells”, of which the most serious is sickle cell anaemia1. This condition “mainly occurs in Black people”2, which has had a profound impact on the way sufferers have been treated in the NHS.
As is noted by Dr Grace Redhead Sickle cell was “first identified in the UK in the 1950s”3. This was at “the same time as the first big wave of migration from the Caribbean and Africa and the initial growth of the NHS.”3 Since the condition was seen as one that “didn’t affect British people” many “white health care professionals... didn’t understand the disease.”3 This meant that patients who were “in desperate need of pain medication were labelled as drug addicts or malingerers, routinely dismissed, abused or ignored”.3
Information on sickle cell disease is much more freely available now, and yet as Dr Redhead says “there is still a lack of sickle cell training and knowledge” outside specialist sickle cell services.3 This was highlighted in a report published in 2021 entitled “No One’s Listening: An Inquiry Into the Avoidable Death and Failures of Care for Sickle Cell Patients in Secondary Care.”4 This report found that there was still “low awareness of sickle cell among healthcare professionals and clear examples of inadequate training.”5 80 years on from sickle cell disease first being identified in the UK lack of training around the condition is still contributing to needless suffering and dying.
But health librarians do have power to help sickle cell patients who are still falling prey to this deep-rooted failing based in the racist history of the NHS. There is hope that the “No One’s Listening” report will make a difference to training and care around sickle cell disease. But this will only happen if the report is made widely known, and from past experience it is clear this information is not considered a priority. Therefore, promoting this report and other information on sickle cell disease may need knowledge specialists to work beyond NHS guidelines and priorities.
In the words of Elaine Russo Martin, “Medical librarians cannot be neutral and be trusted advocates for improving the health of the communities they serve.”6 Promoting information on best care for sickle cell disease is clearly not a neutral act in the context of the NHS. But as Joni Jabbal of the King’s Fund concludes, if we are to be “serious about tackling health inequalities and improving access to care for those who are least well served by health services, sickle cell disorder would seem like a very important place to start” 7.