A conversation about health and care services for people with sickle cell
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Healthwatch Sandwell were commissioned by CQC to undertake a portrait of a seldom heard community to understand which health and care services they used and their experience of doing so and what changes they’d like to see. Healthwatch Sandwell engaged with people with sickle cell disease which predominantly affects people of African and African Caribbean ethnic origin. They spoke to 6 people via a focus group and individual interviews
Most people hadn’t heard of CQC and didn’t know what their role was. They had used a range of services:
- GPs
- Ambulances
- The Sickle Cell and Thalassaemia Centre at Birmingham City Hospital
- Hospitals
- Social services
Their main challenge in dealing with frontline health and care services was the lack of knowledge and understanding of sickle cell and its impact on people’s lives, including of sickle cell crises. As a result, people didn’t get the care and treatment they needed for their condition.
The Sickle Cell and Thalassaemia Centre was only open during daytime, which made it difficult for people to seek help when they had a crisis at night. There was no after care after a crisis other than friends and family. Most didn’t receive any help from social services for care and support needs.
People wanted to see sufficient healthcare resources for people with sickle cell so that they could live their lives fully and independently.