About the project
The Ageing Well with Sickle Cell project is the first recipient of the King's College Hospital Charity’s Strategic Crown Fund.
We are very excited to have been awarded this grant which will support with raising awareness of accelerated ageing within the sickle cell community locally and nationally.
Why is this project needed?
Managing multiple hospital appointments while balancing work and family responsibilities presents a significant burden for this group, posing a need for tailored healthcare services.
Through this project, we aspire to bridge the gap between the unmet clinical needs specific to our local sickle cell population. Our objective is to look at adaptation of current pathways to include this group of patients whilst recognising disease-specific needs. By investing in this project, we aim to lay the groundwork for improved outcomes and enhanced quality of life for individuals with sickle cell disorder.
The landscape of care for sickle cell disorder (SCD) is evolving, with an emerging cohort of adult patients facing health challenges that were not prevalent a decade or two ago. Due to improvement in the care of childhood (SCD) in the last three decades, almost all babies born in the UK with this condition live to adult age, however life expectancy is still 20+ years shorter compared to the general population.
Many of these patients are considered "frail" at the age of 35. They are faced with complex health conditions that are typically associated with much older individuals and therefore are unable to access services that are currently designed for people over the age of 65.
What are the objectives?
To identify the measures of health and wellbeing from the ageing sickle cell patient’s perspective.
To identify barriers or shortcomings in care that prevents the ageing sickle cell patient from improving their quality of life.
To assess whether screening for, and management of diabetes mellitus is carried out appropriately in patients with sickle cell.
To assess whether patients with sickle cell are appropriately referred for early detection of cancer and if they adhere to screening programmes.
Engage with stakeholders including haematology specialist clinicians and staff, integrated care systems, specialised commissioners, community services and patients to design services that prioritise patient needs and deliver maximum value.
Address health inequalities by ensuring that all patients served by King’s College Hospital benefit from the best clinical services.
Provide data to design future research into the implementation of clinical pathways.
Who is involved in this project?
The project is run by a multi-disciplinary group of doctors, nurses, data analysts and managers.
We have patients sitting on our steering committee who have experience of representing the sickle cell community.
Click here to find out how you can get involved.
