The Red Cell Network : University College London Hospitals NHS Foundation Trust

The Red Cell Network (TRCN), led by University College London Hospitals NHS Foundation Trust is responsible as the Haemoglobinopathy Coordinating Centre (HCC) to support the provision of specialist and non-specialist haemoglobinopathy services to adults and children with Sickle Cell Disorder, Thalassaemia and Rare Inherited Anaemia.

TRCN works in collaboration with The Whittington Health NHS Trust and North Middlesex University Hospital NHS Trust to cover the sickle cell networks across North Central London and East Anglia whilst also working in collaboration with Imperial College Healthcare NHS Trust and St George’s University Hospitals NHS Foundation Trust to cover the thalassaemia networks across West London.

The Red Cell Network’s service ethos is to provide a high quality service, in line with the requirements laid out by the Specialist Commissioning Board, offering a caring, adaptable and patient centred approach to management and long-term care of patients and to build on and spread best practice throughout the Network.

The Red Cell Network’s 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. TRCN is 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.

Our goal is to improve the patient experience and we hope to achieve this by the following key objectives:

• Establishing and maintaining joint methods of working throughout the network

• Co-ordinating a central data management role, ensuring and advising in-putting patient information onto the National Haemoglobinopathy Register (NHR) at specialist and local centres

• Publishing guidelines on the care and treatment of sickle cell disorder, thalassaemia and rare anaemias

• Increasing the understanding of a patient’s experience via Patient Forum/Awareness events

• Identifying the current and future needs of Haemoglobinopathy patients

• Supporting SHTs within the network in securing appropriate staffing as set out by the Quality Standards, facilitating workforce planning and implementation to accommodate the changing needs of the service

• Supporting Trusts within the network in accessing and developing training and documentation and evidence of the above thus adhering to the Quality Standards

• Supporting provision of a high quality service to patients managed in the linked hospitals across the network, by sharing of clinical guidelines across the network, and by seeing each individually, at least once each year, for a comprehensive annual review, and by offering advice, support and training to health care professionals running the local services

• Offering education, awareness and learning for patients, their carers and the public

• Implementing an annual programme of audit and research across the network

• Collecting, analysing and learn from performance, research and audit data ensuring benefits are imbedded in on-going service improvement

• Providing evidence of practice to external and internal bodies as required