Haematology patient engagement :: King's Health Partners

King’s Health Partners Haematology service is one of the largest departments of haematological medicine in the country. Patients across south London and beyond are referred to us, and we receive a large proportion of regional referrals for specialised services.

King’s Health Partners Haematology is committed to engaging patients, service users, their families and carers, and the wider communities we serve in the development and implementation of our programme. We see patient and public engagement as a continuous process of working together with patients, service users, carers, and other stakeholders to design, develop and deliver high quality integrated care, in a way that best meets their needs.

Engagement and involvement

We work with members of our local community to drive projects across different haematological sectors. Some examples include:

Having patient voice represented on our programme board, where we meet monthly to review our programme activities.
Consulting with the Baked Bean Company, which is a charity providing services for people with learning disabilities across Wandsworth and surrounding boroughs, to create an easy read version of our business plan.
Setting up a joint patient forum for myeloma patients and their caregivers across the wider south east London network.
We have two patient representatives on our quarterly cross-trust sickle meeting, who are both living with sickle cell disease. We are also working with Genomics England to expand Patient and Carer Involvement in our sickle cell disease work.

We host several educational events for patients and members of the public to increase awareness of blood disorders, particularly as some conditions are rare. These events serve as an opportunity for patients and their carers to better understand the care required and to hear about the latest updates in clinical trials and/or disease management.

Here are some summaries of the events we have previously held:

REDRESS Study Public Launch: The REDRESS Study is a groundbreaking initiative looking at haematopoietic stem cell transplantation from haplo-identical donors as a curative intervention for adults with severe sickle cell disease. The day included a small group discussion on what a cure for sickle cell disease looks like, a panel discussion with patients who shared their experiences having had a stem cell transplant, and presentations from researchers across King’s Health Partners.
SEL PCD Registry showcases: The SEL PCD Registry is a research database collecting demographic, diagnostic, and treatment information on patients with myeloma and related plasma cell disorders. We launched the project publicly in December 2022 with a showcase event with presentations on the Registry and its significance from the perspective of clinicians, research staff and patients. This was followed up in February 2024 with a second showcase, presenting some of the information collected so far, and discussing potential future uses for the Registry dataset.

If you are a patient, carer, or a member of the local community interested in hearing about our work and being involved, please contact us at khphaematology@kcl.ac.uk.