On Saturday (27 April), our sickle cell team held an event at Queen’s Hospital focussed on educating parents and carers about the disease. It provided essential information on how to care for children affected by this condition.

Sickle cell disease is a condition passed down through families that affects the red blood cells, which carry oxygen around our body. Sickle cell disease is particularly common in people with an African or Caribbean family background.

The main symptoms of sickle cell disorder are anaemia and episodes of severe pain. The pain occurs when the cells change shape after oxygen has been released. The red blood cells then stick together, causing blockages in the small blood vessels.

Sickle cell disease is a serious and lifelong health condition, although treatment can help manage many of the symptoms.

The event was organised in response to a recognised need for greater awareness and understanding of how to effectively manage sickle cell disease, including knowing when to seek emergency medical help.

The programme included discussions emphasising the importance of regular medical reviews and featured three practical workshops in the afternoon. These workshops allowed parents to engage directly with the challenges of managing the disease.

Abimbola Momoh-Ojewuyi, a consultant paediatrician who specialises in conditions like sickle cell, took the lead in organising and running the event. She said:

I am so pleased with how the event went. It ran smoothly, and we had a great turnout, with 30 parents and approximately the same number of staff.

It was fantastic to see how open the parents were to sharing their stories and participating in discussions.

Parents who attended gave positive feedback, including praising how well organised and informative the event was. One parent said: “It was great to include a range of speakers from different organisations and professions – you somehow perfectly pitched the event at a level for both parents and clinicians.”

John James, Chief Executive of the Sickle Cell Society, also attended. He said:

The sickle cell event hosted by the BHRUT team was outstanding. The engagement from the parents and the quality of their questions were impressive.

Sickle Cell Disorder is the fastest growing genetic blood condition in the UK. It is a debilitating condition that often does not get the attention it deserves. I was pleased therefore to be part of the BRHUT’s team efforts in enhancing sickle cell education and awareness for their growing population of patients.

The conference was also recorded and will be shared with those who were unable to attend, ensuring the information reaches a broader audience. The event wouldn’t have been possible without funding from the King George and Queen’s Hospitals Charity.

Debbie Omodele, a clinical nurse specialist (CNS) in haematology, who helped organise and run the event, said:

Everyone was really involved. We received a lot of great feedback from parents, and we'll take some of their suggestions into account for our next event.

The team hope to hold similar events in the future. The strong participation from everyone not only made it a day of learning but also highlighted the community's commitment to improving the lives of those affected by sickle cell disease.