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Sickle Cell Awareness Project (SCAP)

Sickle Cell Awareness Project

We are happy to announce that The National Lottery Community Fund has funded our Sickle Cell Awareness Project (SCAP).

Sickle Cell Disease (SCD) is now one of the most common serious genetic condition in England. The condition has a life-threatening outcome. However, there is no current reliable estimate of the total number of people living with SCD in the UK. This lack of data makes planning appropriate services for those with SCD problematic and has the potential to lead to poor care for those with sickle cell disease.

Sickle cell disease is the name given to a group of lifelong inherited conditions that affect haemoglobin. Most people affected are of African or African-Caribbean origin, although the sickle gene is found in all ethnic groups. It is estimated that there are between 12,500 and 15,000 people with sickle cell disease in the UK[1]. The prevalence of the disease is increasing because of immigration into the UK and new births

  • SCD can affect anyone, although it predominantly affects people from African and Caribbean backgrounds.
  • 1 in 76 babies born in the UK carry sickle cell trait.
  • Approximately 15,000 people in the UK have sickle cell disorder.
  • Approximately 350 babies with SCD are born in the UK every year.
  • Children with SCD are at increased risk for stroke, the risk is highest between the ages of 2 and 16.
  • 8 Episodes of pain may occur in sickle cell disorder and are generally referred to as a crisis

Project Engagement

This project will use drama to engage thirty young people, aged 18-30, ten per theme, to explore real-life experiences of people with sickle cell when accessing emergency health services at A&Es; discussing provisions to cater for their health needs with employers; trying to undertake their studies.

They will be guided by an experienced theatre director, develop scenarios, produce scripts, rehearse and deliver short performances. At the end, the thirty strong groups will fuse together the outcomes of the three themes and produce a one-hour performance, delivered at the project end celebration, attended by the wider community.

As this project will engage members from diverse communities, and because the disease affects all communities in one way or another, this means that this project will help bring ‘people together and build strong relationships in and across communities.
This will also – by improved awareness, connectivity and empathy – help promote the better management of the condition and ‘help more people to reach their potential.

We call upon anyone affected by the sickle cell in any way and the wider public to join us on this project. The aim is to begin an adult conversation which will deliver lasting change.

For participation, please fill in our volunteering form

How can you help?

  •  By taking this time to read about Sickle Cell you have already helped someone with Sickle Cell through having a better understanding of what life challenges they face. You have therefore helped us closer to our mission of raising the much-needed awareness of Sickle Cell in the UK.
  •  You can help by educating others about Sickle Cell and help break the stigma around it.