What do you feel matters most to people over the age of 35, living with sickle cell disorder?

This was the question presented to attendees at the Ageing Well with Sickle Cell launch on Wednesday 5th March 2025.

Patients and their loved ones flocked to the Robin Murray Theatre in Camberwell to learn more about this exciting project aimed at understanding the patient experience to identify ways in which we can make positive changes to the care they receive.

The evening was opened with a warm welcome from John James, Chief Executive Officer of the Sickle Cell Society who stressed the important role patients will have in shaping and influencing the project.

Subarna Chakravorty, a Consultant Paediatric Haematologist and Co-Clinical Lead for the project explained the overall vision for sickle cell care at King’s College Hospital and how the outcomes from the project will positively impact other streams of sickle cell care improvement work across the trust.

Arne De Kreuk, Consultant Haematologist at King’s College Hospital and the Clinical Lead for the project introduced us to the rationale behind the initiative in his talk titled “Ageing not so well with sickle cell”. We learnt about the current contributors to accelerated ageing in sickle cell disorder and how it impacts the quality of life of those who experience it.

After this, Elvis Aduwa, a sickle cell patient and Doctor gave a presentation on steps to take to stay healthy while growing older and shared the tips he uses to manage his condition.

We were made aware of the numerous ways to get involved in the project by Marie Clough, Programme Manager Haematology and Patient and Public Involvement and Engagement Lead at King’s Health Partners. Marie shared “What Matters Most” themes, derived from feedback given by launch registrants, before inviting attendees to join a live interactive poll in which patients were asked to rank the themes in order of importance and share how living with sickle cell has changed as they have gotten older.

A dynamic discussion followed afterwards with questions asked around the connection between diabetes and sickle cell and the hopes and aspirations for the project. These exciting discussions continued into the evening as attendees exchanged views and discussed the evenings talks in greater depth.

It was a great interactive evening which gave us a sneak peak into the exciting patient centred discussions that we have to look forward to as the project progresses!

Those who were unable to attend the launch are able to watch the full version by clicking here.