We are delighted to announce that we have committed £150,000 to an innovative project entitled ‘Ageing Well with Sickle Cell’ as part of our Strategic Crown Fund award. The project will help us to support life-changing care at King’s and understand the unique needs of our local community.
Sickle cell is a lifelong debilitating disease that shortens life expectancy by 20-30 years and results in multiple co-morbid conditions at a very young age, leading to the development of early frailty. Several factors, including a paucity of responsive workplace policies and a lack of sufficient knowledge of this condition, have resulted in only a fraction of patients being able to join the workforce and remain in full-time employment.
King’s College Hospital hosts some of the largest cohorts of patients with sickle cell disease in the UK and has contributed to innovative scientific research and high-quality clinical service in this field. However, patients with sickle cell disease continue to face poor quality care compared to other disease groups, and research funding to improve lives in this condition has been inadequate.
A brilliant team at King’s College Hospital and King’s Health Partners Haematology is behind the project, hoping to bridge some of the existing knowledge gaps about the best pathways of care available to our patients.
They aim to gather valuable insights to improve access to existing care pathways, develop new ways of providing care in collaboration with patients, and foster stronger communication among care providers to increase awareness of the unique challenges these patients may face.
The team is looking for a clinical research associate from within their nursing and research establishment. Please get in touch with them if you wish to be part of this innovative project.
The snowball effect of sickle cell disease
As a chronic condition that affects patients from birth, the health complexities associated with sickle cell disease are far-reaching, both medically and socially.
Living with sickle cell disease can have a profound psychosocial impact on patients and their families. Chronic or recurrent acute severe pain, stigmatisation of the disease in the community and at the workplace, associated co-morbid conditions, the need for regular hospital appointments necessitating time off school (for children) and work (for parents), and early frailty are factors that may lead to feelings of isolation, anxiety, and depression.
Lack of clear care pathways
Despite these complex challenges, this cohort of patients often misses 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 in sickle cell.
King’s to lead the way in SCD care and treatment
This project will continue King’s legacy of world-leading patient research. Rooted in South London but tackling global issues, it will help to pave the way for a brighter future for sickle cell disease patients aged 35 years and older.
With King’s having one of the greatest concentrations of people living with sickle cell disease in Europe, the vital need for this work within our local community couldn’t be more strongly felt.
About the Strategic Crown Fund:
Launched in 2023 as an offshoot of the regular Crown Fund, the Strategic Crown Fund is dedicated to transforming care at King’s where it is most urgently needed. In 2023, the fund pledged to invest £300,000 in projects aimed at enhancing support for patients facing frailty or vulnerability, whether due to the complexity of their needs, the severity of their illness, or broader barriers preventing them from getting the help they need.
From pre-admission to post-discharge, these patients require tailored, holistic support to achieve optimal outcomes. The fund supports innovative projects that aim to make this support a reality.
Find out more about the Crown Fund here.
