“I’m enjoying ageing and living well with sickle cell. I myself had a very good youthful life, and I was only diagnosed in my 60s…Compassion to me is that I should be seen as a person and not as something in the chair.”
Focus Group 1: Thursday, 11th of September 2025
Focus Group: Care with Compassion, Mental Health & Financial Stability
The Ageing Well with Sickle Cell project, in collaboration with the Sickle Cell Society, recently hosted its first focus group on Thursday, 11th September 2025. This was an opportunity for patients to share their experiences and perspectives on ageing with sickle cell disorder.
Six patients living with sickle cell kindly shared their personal reflections and insights, providing a powerful account of the challenges and opportunities faced by people living with the condition as they grow older.
The session was structured around three key themes: Care with Compassion, Mental Health & Well-being, and Financial Stability. Each theme was introduced with guiding questions, followed by an open discussion in which patients reflected on their experiences.
Care with Compassion:
The first theme, Care with Compassion, explored what compassionate healthcare looks like and how it shapes patient experiences. Patients reflected on positive encounters where they felt listened to and respected, and areas where improvements are needed. Key issues raised included differences in the quality of care between paediatric and adult services and a lack of education and awareness on sickle cell amongst healthcare professionals.
“I'm enjoying ageing and living well with sickle cell. I myself had a very good youthful life, and I was only diagnosed in my 60s…Compassion to me is that I should be seen as a person and not as something in the chair.”
Mental Health and Well-being:
The discussion then moved to Mental Health and Well-being, where patients highlighted the link between physical and emotional health. Many described the impact of stress and the challenges of living with a long-term condition. Concerns were raised about whether mental health needs are adequately recognised and supported within existing healthcare provision.
“...they said I've got diabetes type 2 and that was it. It did shock me at the time because I thought, Oh, all these diagnoses are really hard because they sent me for lots and lots of tests. Some tests they send me for, I don't even know who's asking for these tests…it's depressing to say the least, because you feel your mortality is not good, but I'm getting there.”
Financial Stability:
The final theme, Financial Stability, focused on the financial challenges faced by people living with sickle cell. Participants spoke about the condition's impact on employment, pensions, and other essential aspects of care. Experiences varied, but the discussion reinforced the importance of financial security in supporting long-term health and well-being.
“I feel as I've gotten older, I've actually found it gets more complicated when you are working for yourself because then you have periods of time where you might not be very well and you're not able to work. But you know, in regular employment I've always done multiple jobs, you feel like you almost feel guilty, as if you have to work harder than everybody else to make up for the time that you might be off when you're sick.”
This focus group generated valuable insights into the realities of ageing with sickle cell disorder. The reflections shared will play a central role in shaping the direction of the Ageing Well with Sickle Cell project and ensuring that patient voices remain at the heart of this work.
Written by Rania Al-Mukhtar (KHP Ageing Well with Sickle Cell Intern)