South west haemoglobinopathy coordinating centre
about us

This service provides care and support for patients with sickle cell anaemia, thalassaemia and rare inherited anaemias. Our team runs a specialist and comprehensive service for patients in Bristol and the surrounding areas who have inherited these genetic conditions. We provide our service to all patients who are either transferred from the Paediatric Haemoglobinopathy service or relocated to Bristol by moving home or for university. We also receive referrals from other regional centres in the South West and aim to see all regional patients in virtual clinic appointments once per year.

In 2019, UHBW was awarded as Specialist Haemoglobinopathy Team (SHT) for thalassaemia and rare inherited anaemias and granted a Haemoglobinopathy Coordinating Centre (HCC) status for sickle cell disease. All relevant service specifications for both services are published by NHS England.

The service is provided in the Bristol Haematology and Oncology Centre (BHOC), which is a part of the University Hospitals Bristol and Weston NHS Foundation Trust (UHBW). If BHOC is not your local hospital, we aim to work closely with your local NHS hospital Trust to help you receive the specialised care and support that you need, both in hospital and in the community. The Adult Haemoglobinopathy service aims to provide a smooth transition from the Paediatric service by introducing the patient to the Adult team before they are transferred.

Visit Our Hospitals and Teams page to find out more about the adult and paediatric teams in the South West.

What is the HCC?

The South West HCC or Haemoglobinopathy Coordinating Centre is one of ten regional networks in England which coordinates care for haemoglobinopathy patients across the South West. HCCs were established in 2019 as part of the development of ‘Specialised Haemoglobinopathy Services’ in England, designed to improve the experience of patients with haemoglobinopathies and to ensure equity of care across the country. The diagram below shows the structure of haemoglobinopathy services in England:

structure of haemoglobinopathy services in England

Diagram reproduced from NHS England SHT Specification Document

The South West HCC is a regional network hosted by University Hospitals Bristol and Weston NHS Foundation Trust. Our network oversees the care of patients with sickle cell disease – the HCC for thalassaemia and rare inherited anaemia is The Red Cell Network based in University College Hospitals London.

This three-tiered model shows that the HCC is responsible for running their network which consists of specialist and local haemoglobinopathy teams. In the South West, Bristol (University Hospitals Bristol and Weston NHS Foundation Trust including Bristol Royal Hospital for Children and Bristol Haematology Oncology Centre) is the specialist haemoglobinopathy team for adults and paediatrics, covering the care of sickle cell, thalassaemia and rare inherited anaemia patients. There are eight local haemoglobinopathy teams across the South West:

  • Gloucestershire Hospitals NHS Foundation Trust
  • North Bristol NHS Trust (adults only)
  • Royal United Hospitals Bath NHS Foundation Trust
  • Somerset NHS Foundation Trust
  • Royal Devon University Healthcare NHS Foundation Trust
  • Torbay and South Devon NHS Foundation Trust
  • University Hospitals Plymouth NHS Trust
  • Royal Cornwall Hospitals NHS Trust

We hold meetings to discuss regional cases once a month (known as the multidisciplinary team meeting or MDT). We oversee the annual reviews that patients have each year and offer 24/7 specialist support.

We also contribute to the National Haemoglobinopathy Panel meeting which takes place once per month. We also have twice yearly business meetings which patients are invited to attend – please contact the haemoglobinopathy team on haemoglobinopathybristol@uhbw.nhs.uk if you are interested in attending the next meeting.

HCC Annual Reports

2024-2025 Report

 

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