18 April 2024

We are thrilled to announce the "Ageing Well with Sickle Cell" project - a collaborative effort between King's College Hospital Charity, King’s Health Partners Haematology, King’s College Hospital NHS Foundation Trust, and the Sickle Cell Society.

This groundbreaking initiative aims to address the unique healthcare needs of adult sickle cell disease (SCD) patients, particularly those facing challenges related to ageing and frailty.

This Project is the first recipient of the King's College Hospital Charity’s Strategic Crown Fund. The project will span over two years and will focus on patients from King's College Hospital NHS FT initially. 

The landscape of sickle cell disease care is evolving, with an emerging cohort of adult SCD patients who face health challenges that were not prevalent a decade or two ago. Many of these patients are considered "old" at the age of 35, yet they grapple with severe organ damage and comorbidities typically associated with much older individuals. Managing multiple hospital appointments while balancing work and family responsibilities presents a significant burden for this group, necessitating tailored healthcare services.

Through the "Ageing Well with Sickle Cell" project, we aspire to bridge the gap between existing frailty programs and the unmet needs specific to our local SCD population. Our objective is to co-develop clinical criteria that identify risks to health and wellbeing in SCD patients well before the age of 65 and look at adaptation of current pathways to include this group of patients whilst recognising disease-specific needs.

By collaborating on this project, we aim to thoroughly understand and document the extent of unmet clinical needs within this demographic, laying the groundwork for improved outcomes and enhanced quality of life for individuals with sickle cell disease in the long term.

Key objectives of the project include:

  1. Develop a patient and provider co-created outcomes-based healthcare service to achieve clinical outcomes and enhance quality of life;
  2. 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;
  3. Address health inequalities by ensuring that all patients served by KHP benefit from the best clinical services; 
  4. Provide data to design future research into implementation of clinical pathways.

As part of our commitment to community engagement, we will engage with local SCD patients and carers to ensure they are aware of the project and how they can contribute to make sure it meets their needs.

We are excited about the potential impact of the "Ageing Well with Sickle Cell" project and look forward to working closely with our partners and stakeholders to achieve our shared objectives. Together, we can ensure that individuals living with sickle cell disease receive the comprehensive care and support they deserve.

To find out more about the project, visit the King's College Hospital Charity site here.

For further inquiries or to learn more about our project, please email KHPHaematology@kcl.ac.uk.