• Join Today!

Become a member and connect with:

  • An Active Online Community
  • Articles and Advice on SCD
  • Help Understanding Clinical Trials

Sickle cell patients in UK survey, especially those 16 to 20, voice problems with care and pain relief given


In a survey, patients across the U.K. with sickle cell disease — especially adolescents and young adults — voiced discontent with their healthcare experiences, particularly as they relate to emergency care and the promptness of pain relief, a study reports.

The study, “Patient-reported experience measure in sickle cell disease,” was published in the journal Archives of Disease in Childhood.

Sickle cell is among the more common, serious genetic conditions diagnosed in newborns in the U.K., predominantly affecting people of African descent, the reseachers note, citing a National Health Service (NHS) report.

Despite its prevalence, understanding and awareness of the condition — which influences patient care — can be poor. Disease symptoms like vaso-occlusive pain crises that strike patients are often treated with opioid-based painkillers that require a prescription, and younger patients requesting such treatment can be regarded with suspicion.