Updated Statement on the preventable death of Evan Nathan Smith

Last month, we published a statement following the publication of the inquest into the tragic death of Evan Nathan Smith. In our statement, we noted that the Sickle Cell Society would be pursuing a number of actions with and on behalf of the sickle cell community.

On 26^th April, we met with the Chair and Interim Chief Executive of North Middlesex Hospital for a preliminary meeting to discuss how they will engage with the sickle cell community around their response to the failings in the care provided to Evan. We received assurances that the leadership team at the hospital is committed to thorough internal investigation of what went wrong and what needs to change, and that meaningful engagement with the sickle cell community is a key part of this work. We will be continuing to engage with North Middlesex Hospital and will provide updates as this work continues.

We know that the recent high-profile cases of failings in care for individuals with sickle cell disorder are sadly not isolated incidents and that sickle cell patients all too often receive sub-standard care. We share the sickle cell community’s concerns and are determined that the increased attention these cases have brought to sickle cell disorder results in national change to ensure that such failings are not repeated in future.

With this in mind, we have developed plans to work with the All-Party Parliamentary Group on Sickle Cell and Thalassaemia (SCTAPPG), chaired by Pat McFadden MP, to conduct an Inquiry into Sickle Cell Care. The inquiry will examine the care sickle cell patients receive and seek to identify why care for sickle cell patients is too often sub-standard.

The group will be publishing a call for written evidence early next week and will take oral evidence in June. We strongly encourage patients, families, healthcare professionals and researchers to submit evidence by answering a few specific questions when the call is published on our website. The SCTAPPG will then produce a report outlining the evidence received and will make recommendations for the widespread changes that are needed to improve the care sickle cell patients receive. We will provide further updates as this work proceeds.

Sickle Cell Society

Call for evidence: (www.sicklecellsociety.org/call-for-evidence/)