Sickle Cell Awareness Day
Healthwatch Sandwell has been listening to people with Sickle Cell and their families and carers to understand their experiences of health and care services. Healthwatch Sandwell has heard:
- People with Sickle Cell can spend a lot of their time in hospital being treated during a Sickle Cell “crisis”.
- There is a need to raise awareness of the disorder to help improve the patient experience of services.
- People with Sickle Cell are often looked after by their family or friends as carers – few people access other care and support services.
Healthwatch Sandwell are working with people with Sickle Cell and the Organisation for Sickle Cell Anaemia Research (OSCAR) Sandwell to support development of the patient’s voice in improving their health and care services.
Working together with the Sickle Cell & Thalassaemia Centre at City Hospital and Sandwell Council Adult Social Care we are looking at what changes are needed to services to achieve good and streamlined health and care experiences for patients.
What is Sickle Cell Disorder?
Sickle Cell Anaemia is a group of inherited red blood cell disorders. It is the most common genetic disease in the UK. Over 12,000 individuals have Sickle Cell disorder. Normal red blood cells are round like doughnuts, and they move through small blood tubes in the body to deliver oxygen. Sickle red blood cells become hard, sticky and shaped like sickles used to cut wheat. When these hard and pointed red cells go through the small blood tube, they clog the flow and break apart. This can cause pain, damage and a low blood count, or anaemia.
What makes the red cell sickle?
There is a substance in the red cell called haemoglobin that carries oxygen inside the cell. One little change in this substance causes the haemoglobin to form long rods in the red cell when it gives away oxygen. These rigid rods change the red cell into a sickle shape.
How do you get Sickle Cell Anaemia?
You inherit the abnormal haemoglobin from both parents who may be carriers with sickle cell trait or parents with sickle cell disorder. You can not catch it. You are born with the sickle cell haemoglobin and it is present for life.
Who does Sickle Cell affect?
Sickle cell is in many nationalities including African Americans, Arabs, Greeks, Italians, Latin Americans and people from India. All races should be screened for this haemoglobin at birth. In the UK, 1 out of 10 African Caribbean’s have sickle cell trait and 1 out of 625 newborn’s have the disease.
Links for more information on Sickle Cell: