Haemoglobinopathy Coordinating Centre

The Haemoglobinopathy Coordinating Centre (HCC) is based at The Royal London Hospital and is the centre for thalassaemia, rare anaemia, and sickle cell anaemia.

 

The HCC for thalassaemia and rare anaemias covers of East London, Essex, southeast London and the southeast of England.

What is a Haemoglobinopathy coordinating centre (HCC)? 

The HCC is a specialist treatment centre which has been given the role of helping to coordinate and improve access to services and specialists to ensure better outcomes for patients. The HCC will do this by working with Specialist Haemoglobinopathy teams (SHT) and local hospitals. 

NHS England has decided that there will be 10 HCCs for Sickle cell and 4 HCCs for thalassaemia 

To learn more please read the HCC NHS England service specification 

For patients and families

What is Sickle Cell Disease (SCD)?

What is Thalassemia? 

What is the role Specialist haemoglobinopathy team (SHT)?  

This is your specialist hospital which will deliver and coordinate care for patients living with Sickle cell, Thalassaemia and Rare anaemias. They will work closely with the HCC teams.  

For our specialist centre, the Royal London Hospital, please follow the links below: 

Patient information leaflets 

Please do not hesitate to contact your specialist nurse or consultant to discuss things that you do not understand. 

Updates on new treatments 

There are several new treatments for sickle cell, thalassaemia and rare anaemias which are going through discussions to try and make them available in England. 

 

Caring for our patients

Caring for our patients

We want to ensure all patients with sickle cell, thalassemia and rare anaemias have access to the best care wherever they live.

The HCC is specialist treatment centre which helps to coordinate and improve access to services for patients. We do this by working closely with specialist haemoglobinopathy teams and local hospitals across the country.

We will feed into the UK national haemoglobinopathy panel , which is the national multidiscliplinary team made up of experts from the HCCs around the country. Additionally, part of our work is to ensure that all patients are registered with the National Haemoglobinopathy Registry as this will ensure that all patients receive good care wherever they live.

Meet the team

HCC Consultants 

  • Dr Filipa Barroso - Sickle Cell- Adults 
  • Dr Banu Kaya  - Sickle Cell- Paediatrics 
  • Dr Funmi Oyesanya – Sickle Cell - Paediatrics 
  • Dr Paul  Telfer - Thalassaemia- Adults and Paediatrics  

HCC Lead Nurse  

  • Kim Newell  

HCC Network Manager  

  • Joy Nwaozo 

HCC Data Manager  

  • David Kafuko 

How to contact us: 

Bartshealth.HCC@nhs.net 

  • This is a directory of all the specialist haemoglobinopathy centres within our HCC with the members of the team and how to contact them. 

Information for professionals

We want to work with other professionals to ensure that patients receive the right care. If you would like to refer a patient to our centre please read our criteria for guidance:

Multidisciplinary meetings 

This is a chance for the network to discuss cases together monthly. 

Please look at our Standard operating procedure below for the referral criteria and process.  

Patients should be referred by their treating clinician 

MDT meetings occur every month via Microsoft Teams  3pm-4:30pm.  

The link will be sent out to clinicians before the meeting. 

  •     Sickle Cell Adults  1st Monday 
  •     Sickle Cell Paediatrics 4th Monday 
  •    Thalassemia  Adults and Paediatrics  2nd Monday 

Neuro-radiology meeting where Head, Neck and Spinal scans of patients are reviewed with a neuro-radiologist and a representative from the treating team 

Referrals for the MDT should be sent, by a clinician, to Bartshealth.HCC@nhs.net  by 5pm on the Friday before the MDT. This will enable the Consultants to review the referral/s prior to the MDT. 

M&M HCC MDT Proforma [docx] 34KB

MDT Thalassaemia Pro Forma [docx] 35KB

We will be holding regular education sessions over the year, but here is a collection of learning resources and guidelines for clinicians. 

Research

This is a very exciting time for sickle cell, thalassaemia and rare anaemias. There are several trials running across the network and we have listed these below with some details. 

For patients:  

Please get in touch with your specialist centre for more details. 

For clinicians: 

Please ask the HCC for more details or attend the MDT for further updates. 

For more information on any research listed please email us at: Bartshealth.HCC@nhs.net.