A new vision for sickle cell care
A £150,000 project funded by the Charity is aiming to revolutionise care for people with sickle cell disease as they age.
The groundbreaking project ‘Ageing Well with Sickle Cell’ sets out to pave the way for a brighter future for patients with sickle cell disease aged 35 years and older, who often face a range of challenges as they age, with the goal of improving their physical, mental, social and emotional health.
Bringing the project to fruition, researchers at King’s and King’s Health Partners Haematology are exploring how to improve care and raise awareness of the challenges patients face, centering patients and their perspectives at the heart of the research.
King’s Haematology Consultant and Clinical Director for Ageing Well with Sickle Cell Dr Arne de Kreuk spoke to us about the project and the stigma that has long faced sickle cell patients:
“The Ageing Well with Sickle Cell project aims to improve wellbeing and quality of life for this group, because we strongly believe that health and wellbeing are correlated”, Dr de Kreuk said.
“It’s a holistic project. We want to understand what truly matters to patients and how they can be more involved in managing their health. For example, there was a Swedish study that showed that patients administering their own dialysis had better results, so we want to explore factors like agency and other emotional factors that can improve outcomes, and not just the medical healthcare element.”
The hidden toll of living with sickle cell
Sickle cell disease causes chronic pain, fatigue, anaemia, and serious complications such as strokes, blindness, and organ damage—deeply affecting quality of life.
“Over time, as people with sickle cell age, permanent damage can be caused, and some patients experience joint damage akin to that of someone in their 70s or 80s—decades before their time”, Dr de Kreuk added.
For many years, sickle cell research has been underfunded and the realities of the suffering of many have been ignored and dismissed.
Sickle cell is predominantly experienced by people of African or Caribbean descent, as well as those from Southeast Asian backgrounds. Historic discrimination against those with the disease has made life even harder for those who have it.
“There is good data to suggest that ethnic minorities receive substandard care—and this disparity extends to research”, Dr de Kreuk explained. “Sickle cell has historically been underfunded and under-researched compared to other conditions.
“Furthermore, many people with sickle cell may not want to go to healthcare facilities because of the stigma. Harmful stereotypes—such as assumptions around substance misuse—have long influenced how people with sickle cell are treated in some healthcare settings. Though it’s extremely rare in London hospitals and places like King’s where we treat a large number of sickle cell patients, there can be the perception that people are exaggerating their symptoms”, Dr de Kreuk added.
Leading the way at King’s
King’s College Hospital hosts the largest cohorts of patients with sickle cell disease in the UK and the third largest in Europe. It currently treats over 5,000 sickle cell patients.
An emerging group of older adults with sickle cell disorder are now accessing more health services. Their needs are evolving—and care must evolve with them and be informed by them.
The average life expectancy for these patients in the UK is still over 20-30 years shorter compared to the general population.
These patients often miss out on important healthcare interventions designed for older people with frailty and multiple co-morbidities since current pathways do not account for individuals with similar needs at a much younger age, as with sickle cell.
Building on King’s long-standing commitment to patient-led research, the team is working with patients to identify and address what matters most to people living with sickle cell disorder to establish the best pathways of care for them. The goal is to identify and understand their concerns, improve their quality of life, and support them and their loved ones to plan for their futures.
With King’s treating one of the greatest concentrations of people living with sickle cell disease in Europe, this work is vital to our local community. By highlighting the lived experience of ageing with sickle cell, King’s is changing care—and confronting the systemic neglect that has shaped it for decades.
