Sickle Cell and Thalassaemia

The GIRFT sickle cell and thalassaemia workstream is working with specialist providers and wider services delivering sickle cell disease (SCD) and thalassaemia care across England, with the aim of identifying and understanding variations in care and barriers to improvement and seeking out examples of best practice.

The purpose is to ensure all SCD and thalassaemia services identify improvement opportunities and plans to address challenges identified in the care pathway reviews to ensure that SCD and thalassaemia services are providing high quality and efficient care and have, or are developing, improvement plans to address any shortcomings and potential racially driven biases identified in various reports.

GIRFT is working in collaboration with the National Healthcare Inequalities Improvement Programme to address variations and agree bespoke and practical recommendations for enhancing service quality and outcomes.

Sickle cell disease is a life-long condition where a gene mutation causes red blood cells to become irreversibly curved, or sickle shaped. It mostly affects people of black African and black African Caribbean heritage. Haemolytic anaemia occurs when red blood cells are destroyed faster than they are replaced. A sickle cell crisis occurs when the damaged red blood cells block blood vessels and restrict oxygen supply. This can lead to strokes, sight loss, and organ failure, which can be fatal.

People with thalassaemia cannot produce enough haemoglobin, which is used by red blood cells to carry oxygen around the body. This can cause severe anaemia that can be fatal if not treated. It mostly affects people of Asian, Middle Eastern, Southern Mediterranean heritage with about 800 people living with thalassaemia in England.

Click here for a summary of Sickle Cell Disease (SCD) and Thalassaemia Review

Dr Wale Atoyebi

Sickle cell and thalassaemia clinical lead

About Dr Wale Atoyebi

As a consultant haematologist at Oxford University Hospitals NHS Foundation Trust and honorary senior clinical lecturer at Oxford University, Dr Atoyebi brings with him 24 years of experience. He also serves as clinical lead for the Wessex and Thames Valley Haemoglobinopathy Coordinating Centre and has taken a lead role in the development of the network haemoglobinopathy service.

Dr Atoyebi trained in Nigeria and completed postgraduate haematology training in Oxford, including an LRF research fellowship. His expertise includes haemoglobinopathies, iron metabolism disorders, and diagnostics using the Oxford NGS iron regulatory panel. He also oversees global clinical trials in sickle cell disease.

A former clinical director of the department of clinical haematology in Oxford, he has held leadership roles, including training programme director for Haematology, Oxford Deanery, and is currently a FRCPath examiner in haematology.

Previously a member of the CRG for haemoglobinopathies, he led the data workstream during the service review and developed the first SSQD for the newly commissioned HCC’s and SHT’s in 2000.

Dr Atoyebi is a Trustee and Scientific Committee Deputy Chair of the Academy for Sickle Cell and Thalassaemia (ASCAT).

Dr Banu Kaya

Sickle cell and thalassaemia clinical advisor

Consultant haematologist and paediatric haematologist at Barts Health NHS Trust and honorary clinical senior lecturer at the Centre for Genomics and Child Health, Queen Mary University of London

Dr Kaya is a consultant haematologist and paediatric haematologist at Barts Health NHS Trust and honorary clinical senior lecturer at the Centre for Genomics and Child Health, Queen Mary University of London.

She led the paediatric component of the National Haemoglobinopathy Peer Review Programme and co-chaired the steering group from 2014-2016. She was appointed to the haemoglobinopathies clinical reference group (CRG) in 2019 and leads the Royal London Hospital paediatric specialist haemoglobinopathy team.

Dr Kaya is the clinical director for the Sickle Cell Society peer mentoring scheme (London) and co-chair of the Sickle Cell universal care plan design and delivery group. She is a former training programme director and trustee of the British Society of Haematology.

Dr Kaya has been the UK chief investigator for several international clinical trials and has contributed to several national guidelines and policies. She is a fellow of the Royal College of Physicians and Royal College of Pathologists.

Dr Kofi Anie MBE

Sickle cell and thalassaemia clinical advisor

Psychology service lead for sickle cell disease and thalassaemia at London North West University Healthcare NHS Trust and deputy clinical director of the West London haemoglobinopathies coordinating centre (HCC)

Dr Anie leads the psychology service for sickle cell disease and thalassaemia at London North West University Healthcare NHS Trust (affiliated with Imperial College London) and serves as deputy clinical director of the West London haemoglobinopathies coordinating centre (HCC).

He is a fellow of the Royal Society of Medicine and an associate fellow of the British Psychological Society. His professional affiliations also include the British Association for Behavioural and Cognitive Psychotherapies and the American Psychological Association.

He has contributed to the development of both national and international clinical guidelines and standards of care for sickle cell disease and thalassaemia, and was a co-opted expert for NICE guidelines on acute pain management in sickle cell disease. He is actively involved the National Haemoglobinopathy Panel, the steering group of the National Haemoglobinopathy Register, the UK Forum on Haemoglobin Disorders, and is a scientific advisor to the Sickle Cell Society.

Dr Anie’s professional aspiration is owed to personal and family experience of sickle cell disease. In recognition of his contributions, he was awarded the Member of the Order of the British Empire (MBE) for Services to People with Sickle Cell Disease and Thalassaemia in the 2017 Queen’s Birthday Honours.

Sandy Hayes

Sickle cell and thalassaemia nurse advisor

Retired haemoglobinopathy coordinating centre (HCC) lead nurse for the Wessex and Thames Valley Haemoglobinopathy Network

Sandy has had a 40-year adult and paediatric nursing career and worked as the haemoglobinopathy coordinating centre lead nurse for the Wessex and Thames Valley Haemoglobinopathy Network before retiring.

Sandy’s clinical and managerial experience has encompassed three different health economies across the whole life span, and includes senior nursing, quality management, governance and senior leadership roles – from senior ward sister to quality manager, clinical lead for the department of haematology to haemoglobinopathy coordinating centre lead nurse for the Wessex and Thames Valley Haemoglobinopathy Network.

She has extensive experience in developing new services – reviewing and working with teams to reshape and innovate their services, with patients and families at the centre of the conversation.

Sandy is an active reviewer in the current haemoglobinopathy peer review programme, helping to address elements of the system that are not working to the benefit of the patients or staff. She is passionate about services for haemoglobinopathy patients and wants to see improvement in care, outcomes and quality of life for all patients and their families.

Find out more about GIRFT’s data-led approach and best practice resources:

GIRFT welcomes new sickle cell and thalassemia clinical lead

Sickle Cell and Thalassaemia Resources

Coming soon