Haemoglobinopathy Coordinating Centre

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: 

• For children’s services
• For adult services

Patient information leaflets 

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

• A Parent’s guide to managing sickle cell disease

• The Sickle Cell Society is a UK charity for people with sickle cell disease

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

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.

HCC Consultants 

• Dr Filipa Barroso - Sickle Cell- Adults 
• Dr Banu Kaya  - Sickle Cell- Paediatrics 
• Dr Funmi Oyesanya – Sickle Cell - Adults
• 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. 

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:

• Haemoglobinopathy Coordinating Centre referral form (adults) [docx] 30KB
• Haemoglobinopathy Coordinating Centre referral form (paediatrics)[docx] 30KB

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. 

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.