What we do

The West London Haemoglobinopathy Coordinating Centre (HCC) is dedicated to overseeing and supporting safe, effective care for patients with sickle cell and thalassaemia disorders across West London.

Our goal is to promote clinical excellence, improving outcomes and experiences for patients with haemoglobin disorders. We work closely with networks, specialist teams, and local haemoglobinopathy teams to provide clear, coordinated care pathways.

The unified HCC structure in West London has evolved through collaboration among key networks. This includes the North West London Sickle Cell and Thalassemia Network (formed in 2018), which built upon the North West London Haemoglobinopathy Managed Clinical Network (launched in 2003) and the Imperial Paediatric Red Cell Disorders Network (established in 2010), as well as the South West London Haemoglobinopathy Network (formed in 2005). The West London HCC integrates the strengths of these networks, in line with NHS England’s initiative to reorganise and improve care for patients with sickle cell and thalassaemia across the country.

Education

The West London HCC supports the education of staff and patients and has developed an active educational schedule. Dr Lola Oni and Dr Mamta Sohal are the educational leads for the HCC. The HCC has held sessions previously for Community nurses, Midwives, Junior Doctors, Consultants and School staff. The Network manager will send out invites to HCC members in the future in advance of sessions. Please let Ralph Brown and Eni Kuseju know if you would like to be added to the education session distribution list WLHCCINFO: imperial.wlhccinfo@nhs.net

Upcoming Education Sessions Please see the events calendar for the dates of upcoming education sessions.

Some recorded teaching sessions are available on the West London HCC YouTube page.

St George's also hosts a YouTube page with information on pain management.

Multi-Disciplinary Team (MDT)

The MDT consists of professionals from a core panel representing the three Specialist Haemoglobinopathy teams (SHTS) from the HCC, covering all professional groups involved in the care of patients with haemoglobinopathies, including Sickle Cell Disease, Thalassaemia, and Rare Anaemias.

The HCC holds a monthly MDT meeting to discuss cases. Please check the events calendar for the upcoming dates of the MDTs. Details of the eligibility criteria for cases are available in the Healthcare Professionals section of the website.

If you are a healthcare professional with a case to discuss, please contact us at imperial.WLHCCinfo@nhs.net.

Governance and Pathways

The HCC is actively involved in developing governance procedures and pathways for member hospitals, which includes audit requirements and an annual patient survey. HCC's pathways also establish specialist referral procedures for Sickle Cell patients.

More information can be found in the Healthcare Professionals section of the website.

Patient and Public Involvement

The work of the HCC is guided by the Public and Patient Voice group, which meets monthly (typically on Thursday evenings, though the timing may vary). The group discusses how the HCC’s resources can improve patient outcomes and establish priority areas.

To attend these meetings, please contact Ralph Brown and Eni Kuseju by clicking here.

Covid-19 National Data Collection

The West London HCC was invited by the National Haemoglobinopathy Panel (NHP) to collect national data on Covid-19 cases in patients with Sickle Cell, Thalassaemia, and rare anaemias. This data has supported various stakeholders, including other HCC networks, the NHP, NHS England, the Clinical Research Group, and Public Health England.

Find more information on this data source here.

Publications:

1. Layton D, Piel F, Telfer P, 2020, "Real-time national survey of COVID-19 in hemoglobinopathy and rare inherited anemia patients," Haematologica: The Hematology Journal, Vol:105, Pages:2651-2654. Read the paper.