Local families in south west London joins Haemoglobinopathy Team on World Sickle Cell Day

In recognition of World Sickle Cell Day (19 June), our Haemoglobinopathy Team in south west London hosted an impactful and informative community event at Raynes Park Library, bringing together local families, healthcare professionals, and civic leaders to raise awareness, celebrate the strength of those affected, and improve understanding of sickle cell disorder.

The event offered families information around pain management and nutrition, the government support available and peer mentoring programmes. We were thrilled to welcome the Mayor of Kingston, Councillor Noel Hadjimichael and Deputy Mayor of Merton, Councillor Shuile Syeda who joined the community in showing solidarity with those affected by sickle cell and thalassemia.

A series of powerful presentations shed light on sickle cell, featuring valuable insights from the Sickle Cell Society and personal experiences. Patient, Jemima Nelson, 52 shared her personal experience, bringing the realities of living with sickle cell to life. St George’s Red Cell Service also contributed to the discussion offering a clinical perspective and highlight ongoing support and care initiatives.

Jemima Nelson shares her journey living with sickle cell

"This event is a fantastic example of how the community gathered to support people living with long-term conditions. Sickle cell is a condition that is poorly understood in Britain. There needs to be more conversation and ensure sickle cell is better explored and understood”, said the Mayor of Kingston, Councillor Noel Hadjimichael. Deputy Mayor of Merton, Councillor Shuile Syeda echoed this sentiment, emphasising the importance of continued awareness and education.

Mayor of Kingston, Councillor Noel Hadjimichael           

Deputy Mayor of Merton, Councillor Shuile Syeda

Benson Aderibigbe, Clinical Lead for the Haemoglobinopathy Service said: “Sickle cell is one of the most common inherited blood disorders in the UK, with south London having the highest concentration of people affected. Yet the condition remains widely misunderstood within our communities. Community events like this give voice to overlooked experiences and help create connected, resilient communities of care.”

Addassa Follett, Lead Mentor at the Sickle Cell Society said: “We’re continuing to focus on collaboration to improve outcomes for those living with sickle cell disorder. The partnership between CLCH and the Sickle Cell Society is driving joined-up support from community-based initiatives like the peer mentoring programme at St George’s Red Cell Service. Together, we’re challenging stigma, improving care, and amplifying the voices of those affected”.

The day served as a powerful reminder of the importance of community engagement, health education, and compassionate care, ensuring that every individual living with sickle cell feels seen, supported, and empowered.

"Community events like this are essential for breaking down stigma and building stronger, more informed networks of support”, commented, Chineme Duroha, Clinical Haemoglobinopathy Nurse Specialist. 

Local community with Deputy Mayor of Merton, Councillor Shuile Syeda

The local community and patients shared words of appreciation that reflected the energy and meaning of the day. Take a look at some of the inspiring feedback below:

• I am very pleased to be here today because my son has sickle cell thalassaemia, and the school, along with his doctors and nurses, have explained a lot to me. I am not afraid anymore because I’ve learned a lot about anaemia and pain. Thank you very much to the team for today. – Lillian Jemimah Asem (mother of Daniel Asamoah Sebi) and Natasha Joseph (mother of Aniyah Aidooh).
•  I am so happy to be here. I’ve seen how much pain this illness can cause for some people and I often didn’t know how to get help, except to take them to the hospital. I’ve learned that treatment can really help manage the symptoms.
• I now have more understanding about the condition and know how to take better care of myself.
• Thank you very much for organising this event. My daughter was diagnosed just a few days after she was born - she is now 16, and this is the very first event we’ve been invited to. Hearing from others has been very informative and has given us hope. Thank you again.
• A great presentation and very informative. As someone living with sickle cell, I saw my own experience reflected and was moved to tears by the presentations. I only wish this kind of support had been available when I was younger.

Our Haemoglobinopathy team with Donna Wallace (Pan-London Sickle Cell Improvement Project Manager), Addassa Follett (Lead Mentor at the Sickle Cell Society) and Shaleen Simmonds (south west London sickle cell Community Project Manager at St George's University Hospitals NHS Foundation Trust) 

Our Haemoglobinopathy Team provide holistic, specialist care for people with inherited blood conditions across Merton, Sutton, Kingston, Richmond, and Wandsworth, providing specialist care to adults, pre-natal to children and young people living with sickle cell and thalassemia in Merton, Sutton, Kingston, Richmond and Wandsworth.

For more information about our Haemoglobinopathy Service or require sickle cell support in south west London, please visit: https://clch.nhs.uk/services/haemoglobinopathy-service