What we do
Learn about the West London Haemoglobinopathy Coordinating Centres (HCC)
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: email@example.com
Please see the events calendar for the upcoming dates of upcoming education sessions.
Link to the events calendar
Some of the recorded teaching sessions can be found on the West London HCC YouTube page
St Georges also have a YouTube page with information on pain management
St Georges Youtube Channel
The Multi-Disciplinary Team (MDT) consists of professionals from a core panel representing the three Specialist Haemoglobinopathy teams (SHTS) from the HCC representing all professional groups involved in the care of patients with disorders described with the specialist haemoglobinopathies services – Sickle Cell Disease, Thalassaemia and Rare Anaemias
The HCC holds a the MDT on a monthly basis at which cases are discussed, please see the events calendar for the upcoming dates of the MDTs, details of the eligibility criteria for cases can be found in the healthcare professionals section of the website.
Link to eligibility criteria for MDT page under healthcare professionals
Please contact the email address imperial.WLHCCinfo@nhs.net if you are a healthcare professional with a case you would like to discuss
Governance and Pathways
The HCC is also involved in creating governance procedures that cover its member hospitals this includes a requirement for the member hospitals to undertake audits and be part of an annual survey given out to patients. The HCC is also involved in setting up pathways of care for patients this mainly relates to referrals for specialist advice for Sickle Cell patients.
More information on this can be found in the Healthcare professionals section of the website
Patient Public Involvement
The work of the HCC is steered by the Public and Patient Voice group. The group meets once a month normally on a Thursday night, but the timing of this is may to change. The group discusses the work of the HCC and how the resources of the HCC can be used to improve patient outcomes and which areas should be worked on as a priority.
If you would like to attend the meetings please contact Ralph Brown and Eni Kuseju by clicking here
Covid-19 National Data Collection
The West London HCC was approached by the National Haemoglobinopathy Panel (NHP https://www.nationalhaempanel-nhs.net/ )to collect the national data on all Covid-19 cases in patients with Sickle cell, Thalassaemia and rare anaemias. The data from this effort has been used to inform the other HCC networks, The National Haemoglobinopathy panel, NHS England, the Clinical Research Group and Public Health England
Please find the information from this data source here
This data collection effort has led to two papers so far, please find these here:
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, ISSN:0390-6078, Pages:2651-2654
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