The national investigation
Sickle cell disease is the name for a group of inherited health conditions that affect the red blood cells. It affects approximately 15,000 people in the UK.
This investigation looks at the risks for patients with sickle cell disease when they undergo invasive procedures in hospital. Specifically, the investigation explores how hospital specialities can ensure that patients with sickle cell disease are prepared for procedures, like the one described in the reference event below, which could put them at risk of a sickle cell crisis.
About sickle cell disease
Sickle cell disease is particularly common in people with an African or Caribbean family background.
People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels. Sickle cell disease is a serious and lifelong health condition, although treatment can help manage many of the symptoms.
Patients with sickle cell disease receive ongoing care through their local haematology department, but they may need to be seen by other specialities for treatment of other conditions.
The main complication for any patient with sickle cell disease is a sickle cell crisis. This results in severe pain and can cause death if not treated appropriately. Procedures carried out on a patient with sickle cell disease carry a risk of initiating a sickle cell crisis.
The investigation reviews the experience of a patient who attended hospital for an interventional radiology procedure to stop uterine pain and bleeding from fibroids.
The patient experienced significant pain during and after the procedure, which resulted in a sickle cell crisis. They required an emergency blood transfusion.
This investigation explores:
- Communication and information sharing across different specialties and the effect this has on delivery of care for a patient with sickle cell disease.
- How specialist and local centres work together in the treatment of sickle cell disease and to manage the disease during other treatments.
- The experience of patients with sickle cell disease when they receive interventions outside of haematology departments.
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