Patients with sickle cell disease are let down by lack of coordinated NHS care, report findsBMJ 2023; 380 doi: https://doi.org/10.1136/bmj.p257
(Published 31 January 2023) Cite this as: BMJ 2023;380:p257
NHS sickle cell services need to be redesigned to meet the needs of patients, some of whom are being badly let down during crisis episodes by having to advise staff how to treat them and having to monitor their drug doses while in agony, a review has said.1
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Ad hoc, paper care plans should be replaced with digital plans that include medicine tracking and wearable, monitoring technology, recommended the study carried out by the consultancy Public Digital, which was commissioned by the NHS Race and Health Observatory to explore the experiences of people undergoing acute emergency hospital admissions for sickle cell disease and managing crisis episodes at home.
Inconsistent use of care plans results in poor care and does not improve accountability or provide data for care audits and research support, said the report. It also called for clinicians to have accessible NHS guidance on managing a sickle cell crisis.
Research carried out from August to December 2022 included an evidence review and interviews with patients and advocates. It showed that, while some patients had paper or digital care plans, there was no clear definition of what one should look like. Even where plans did exist they were often ignored, the research found.
HIFA Profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data Email address: richardpeterfitton7 AT gmail.com
