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Empowering Parents: Navigating Sickle Cell Challenges

Updated: Aug 31, 2023

On Saturday 12th August 2023, we led a discussion with parents who attended the Sickle Cell Retreat hosted by the Sickle Cell Society. We were keen to provide parents with a supportive space to ask questions and offer valuable insights. From addressing concerns around education and healthcare plans to the complexities of puberty. The Sickle Cell Retreat took place at the Pioneer Centre in Shropshire.

Leading a talk with parents of children affected by sickle cell disease

For parents, the transition from primary to secondary school can be challenging. During the workshop, parents had the opportunity to ask questions about how best to support their children while managing their health. We were able to share ways to raise awareness of sickle cell disease within the school environment and which members of staff it's important to talk to.


We also spoke to parents in detail about healthcare plans. Navigating the healthcare of children with blood disorders requires careful planning and informed decision-making. We shared a template of a healthcare plan with parents and gave them examples of when it should be used, who you should work with when creating a healthcare plan and the importance of keeping it up to date. This allows parents to confidently advocate for their child's wellbeing.


Parents were also keen to address issues surrounding puberty. The challenges of puberty can be amplified for children dealing with sickle cell. The workshop delved into the physical and emotional challenges that come with puberty, offering parents a platform to ask questions and share concerns. We were able to provide guidance on supporting children through this phase and shared useful online resources.


The parenting workshop at the Sickle Cell Retreat not only provided parents with practical insights but also created a space where they could connect and share experiences with one another. The Pioneer Centre became a hub of empowerment, reminding families that they are part of a larger community working towards a brighter future for their children.


Thank you to the Sickle Cell Society for hosting the Sickle Cell Retreat and inviting us to facilitate the parent's workshop. It was great to learn more about the challenges parents and their children are facing and help support them through these challenges.



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