Supporting children with sickle cell disease and their families in Bromley
Sickle cell disease affects around 15,000 people in the UK. Sickle Cell is a serious life-long blood disorder that causes significant challenges, including severe pain episodes, risk of organ damage, and heightened susceptibility to infections.
Sickle cell disproportionately affects people from Black African and Caribbean populations. Systemic inequalities in healthcare mean that many people with sickle cell experience poorer treatment, particularly in emergency settings, as revealed by the No One’s Listening report. These patients often report feeling ignored or disrespected by healthcare professionals, leading to delays in essential care. Patients also often live in the most socio-economically deprived areas, and are at higher risk of both re-admissions and in-hospital mortality, as well as requiring regular ‘top-up’ blood transfusions (Health Innovation Network 2024).
In Bromley, Haemoglobinopathy Clinical Nurse Specialist Debbie Bodi has been running a series of events for the past 6 years that are designed to provide additional health and wellbeing support for children with sickle cell and their families that they may otherwise not have access to. The team hosts 3-4 key events each year, including seasonal events for families and wellbeing sessions for parents/carers, thanks to the support of local volunteers. The events are shaped by continuous feedback given by the families, to make sure activities are relevant to people’s needs.
Annual summer picnic
On 27th July 2024, the team held their annual summer sickle cell picnic at Riverside School. This year’s event was particularly special, attracting the largest turnout yet, with over 60 children and adults participating in the festivities. Activities ranged from face painting and games to live music, creating a lively and inclusive atmosphere. A standout moment was an inspiring performance by Wura Abimbola, a professional singer and leader of Gold, one of Encore’s top gospel choirs, who lives with sickle cell.
Feedback from families attending the picnic was overwhelmingly positive:
- “It was lovely meeting other parents, and I felt like I have found a community that understood our family dynamic.”
- “We are blessed to have Debbie and the team putting together something for not just the children with sickle cell but their siblings and parents to connect!”
- “It was great to meet people on the same journey as us. We were able to exchange contact details and experiences.”
Building a community of support
By fostering a supportive network, these events aim to help reduce isolation, provide access to vital resources, and increase awareness and reduce any stigma around sickle cell. In doing so, they empower families to feel more confident in managing the condition and advocating for better care when needed.
Debbie Bodi shared, “Our focus is to provide families with the care and support that they need. It’s about empowering families by equipping parents with the knowledge and confidence they need to manage the condition effectively, providing additional support to overcome the challenges and barriers to accessing the care they need, as well as normalising discussions about sickle cell and reducing stigma.”
Looking ahead
Bromley Healthcare plans to expand services, offering additional multidisciplinary support, including welfare benefits and legal advice, as part of a wider pilot programme across South East London. Additionally, the team is working to raise awareness and reduce any stigma around sickle cell and promote the importance of blood donation.
Support people with sickle cell by donating blood
Black donors are ten times more likely to have a blood type needed to treat the 15,000 people in the UK with sickle cell. The NHS are asking people from Black African and Black Caribbean backgrounds to come forward to donate blood to help treat sickle cell patients. You can sign up to donate today.