Introduction

North West Haemoglobinopathy Coordinating Centre (HCC)

The North West Haemoglobinopathy Coordinating Centre (HCC) is led by Manchester University NHS Foundation Trust to support the provision of specialist and non-specialist haemoglobinopathy services to adults and children with Sickle Cell Disease.

The North West HCC Region covers all the Specialist Haemoglobinopathy Teams (SHTs) in the North West: Manchester Royal Infirmary, Royal Manchester Children’s Hospital, Royal Liverpool and Broadgreen University Hospitals NHS Trust and Alder Hey Children’s hospital.

North England Haemoglobinopathy Coordinating Centre (HCC)

The North England HCC is led by Manchester University NHS Foundation Trust to support the provision of specialist and non-specialist haemoglobinopathy services to adults and children with Thalassaemia and Rare Inherited Anaemia.

The North England HCC region covers all the Specialist Haemoglobinopathy Teams (SHTs) in North England: Manchester Royal Infirmary, Royal Manchester Children’s Hospital, Royal Liverpool and Broadgreen University Hospitals NHS Trust, Alder Hey Children’s hospital, Sheffield Teaching Hospitals, Sheffield Children’s Hospital, Leeds Teaching Hospitals, Newcastle Upon Tyne Hospitals.

Aims

The overall aim is to improve the experience of all sickle cell and Thalassaemia patients by reducing inequities and improving timely access to high quality expert care. The HCCs are a crucial component in delivering the requirements laid out by the Specialist Commissioning Board and aims to provide strategic direction for the network and oversee the implementation of best practice for sickle cell and Thalassaemia patient care.

The HCC works with local providers to enable all those involved in the delivery of care to haemoglobinopathy patients to put in place models of care supported by pathways, protocols and agreements to:

1. Focus on meeting the needs of the local population within its geographical area and service provision, including the training and development of the workforce involved in delivering haemoglobinopathy care.
2. Interface with other appropriate network arrangements for associated care (e.g. maternity, stroke etc.)
3. Promote effective work to improve acute care needs of patients by working with local Emergency Departments / local commissioners.
4. Develop pathways for clear and direct access to network specialist advice for complex cases, including out of hours.
5. Develop pathways for clear and direct access to the NHP for rare or very complex cases for the consideration of novel therapies such as Crizanlizumab and Voxelotor.
6. Ensure that patients and public are involved in clinical service improvement and development across the network.
7. Work with SHTs and the wider health system to promote self-care and a holistic approach to care.
8. Work with SHTs to ensure that all eligible patients have access to the appropriate screening for the prevention, identification, monitoring and treatment of complications.
9. Work with SHTs to promote best practice to ensure access to all transfusion modalities for indicated patients.
10. Support networks to have effective arrangements for all patients to have an annual review of their care and treatment plan and their condition by appropriately trained staff.
11. Support the use of technologies available to improve patient care.

Governance & Reports

In this section, you can learn more about how we run the Network by reading our annual reports, engagement reports and operational policy.

1. Click here to read our 2022 – 2023 Annual Report
2. Click here to read about our  largest North England Patient Engagement Event (hosted 18.11.2023)
3. Click here to read our HCC Operational Policy