Safety recommendation
HSIB recommends that NHS England identifies and implements a system for sharing clinical information about patients with sickle cell disease to improve access to this information for clinicians, and reduce the risk of a patient’s sickle cell disease not being treated consistently.
Response:
NHS England welcomes the HSIB report and recommendations and is committed to taking effective action in response.
In June 2022 we launched a dedicated programme to improve care for persons with sickle cell disease (pwSCD). We reviewed the end-to-end patient pathway and identified opportunities to improve care quality, including greater consistency in patient records keeping. Inconsistencies in patient record keeping can lead to sub-optimal assessment of patients’ needs, particularly in an emergency setting when a care plan is either not available or inaccessible.
NHS England, as part of a wider Sickle Cell Quality Improvement drive is piloting the upload of digital care plans for pwSCD across existing interoperable digital platforms in London and Manchester, and gaps in the flagging of and sharing clinical information of pwSCD. These pilots will be evaluated and consideration given to wider deployment.
In addition, we have produced and launched a SCD Patient Card, making a patient card available for every person living with sickle cell that wishes to carry one. If presented at A&E, the card will enable a healthcare professional to rapidly access a patient’s sickle cell crisis care plan. The launch of the new card formed part of this year’s ‘Can You Tell It’s Sickle Cell?’ campaign announced on World Sickle Cell Day on 19 June 2023.
Our work to ensure every patient has a digital care plan and a SCD patient card aims to mitigate some potential underlying bias pwSCD may face when waiting for or receiving treatment. It also aims to empower pwSCD and ensure they have agency to advocate and take an active role in their care plan.
Actions planned to deliver safety recommendation:
- Monitor the dissemination and use of SCD Patient Cards, by September 2024.
- Commission and contract teams to review and develop digital care plans for the management of vaso-occlusive crisis (VOC) for pwSCD in England, by March 2025.
- Enable access of VOC care plans for pwSCD across interoperable platforms in regions that have the platforms (London and Manchester). This will be evaluated and be scaled up across regions if effective in improving access to care plans.
Response received on 30 November 2023.