Over the past decade, the therapeutic landscape for sickle cell disease and transfusion-dependent β-thalassaemia has evolved at an unprecedented rate. Allogeneic and autologous (gene edited) haematopoietic cell transplantation offer the possibility of a potential cure for selected individuals.
Despite national commissioning frameworks and increasing clinical experience, access to these potentially transformative treatments remains variable across the UK.
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Consultant haematologist at Glasgow Royal Infirmary and joint lead clinician for red cell services in Greater Glasgow and Clyde. I’m an active member of the Scottish Paediatric and Adult Haemoglobinopathy Network working to improve the care of the increasing numbers of patients with haemoglobinopathies throughout Scotland.
Dr. Indu Thakur is a Consultant Paediatric Haematologist at Children’s Hospital for Wales, Cardiff and leads the Paediatric half of the Hereditary Anaemia Service. Her other interests include research, ethics and education.
Emma trained at St Barts and the Royal London School of Medicine, University of London and qualified in 2001 and is currently working as a Haematology Consultant between UCLH and the Whittington Hospital. She was Clinical Lecturer in Sickle Cell Disease at King’s College Hospital from 2009 to 2013 and during that time was awarded her PhD based on research into markers of severity and predictors of organ dysfunction in sickle cell disease. In 2013 she was awarded the Early Stage Investigator prize from the British Society of Haematology. She is the Haemoglobinopathy Coordinating Centre lead for North Central and West London, East Anglia and the South West and Central England.
She is also the Clinical Lead for the Haemoglobinopathy Peer Review programme.
Dr Ruth Anderson is a Senior Counselling Psychologist and Lead for the Red Cell Haematology Psychology Service at University College London Hospital.
Annette Blackmore has been an adult registered nurse since qualifying in 1987 in Cardiff. Predominately working in the NHS, she has also enjoyed working in Parkland Memorial Hospital, Dallas, TX (1989-1991) which is where she first nursed patients with Sickle Cell Disorder.
Having some gaps in her career to raise her 5 children, she commenced working in Haematology at University Hospital of Wales, Cardiff in 2009. There she was seconded into the role of Sickle cell and Thalassaemia nurse specialist for 6 months in 2015 and then returned to take on the role full time in 2017, insisting that the role evolved into an acute role to address the problems being faced by patients in the hospital setting.
Now working as part of a growing team funded by WHSCC, which will include youth worker, physiotherapist, and psychologist she will be over seeing the care of patients around South &West Wales.
She has been a member of the committee of UK Forum of Haemoglobinopathy disorders since 2019. Also assisted on the panel at Haemoglobinopathy peer review visits.
Since commencing her role in the service she has raised over £1000 for the Sickle Cell Society by completing a sponsored cycle around Cuba, and money for UK Thalassaemia Society by organising a “Drag Queen” night with one of the Thalassaemia patients performing. Also completed small fund raising events to fund the annual study days which are attended by secondary and primary care staff, plus the local patient’s support group.
John James OBE has 33 years of experience within the NHS including 4 CEO roles. He was Chair of the West London Cancer network (2002-2005) and Chair of the North West London Diabetes Network (2003-2004).
As a senior civil servant for the Department of Health he served as Program Consultant on leadership for the NHS Next Stage Review and then as Deputy Director for the NHS Medical Director/Director General. He has been Chief Executive of the Sickle Cell Society for the last 5 years.
In June 2018 John was awarded an OBE as part of the Queen’s Birthday Honours.
Dr Subarna Chakravorty is a Paediatric Haematologist with a special interest in non-malignant haematology and stem cell transplant for haemoglobinopathy and non-malignant diseases. She joined King’s College Hospital as consultant in July 2015. Prior to that, Subarna led the Paediatric Haemoglobinopathy service at Imperial College Healthcare NHS Trust and the Imperial Paediatric Red Cell Disorders Network for 5 years, where she was also involved in the bone marrow transplant programme for paediatric haemoglobinopathy. Since 2021, Subarna has been involved in the adult sickle cell bone marrow transplant service at King’s College Hospital.
Subarna is currently the National Specialty Adviser and chair of the Clinical Reference Group for Haemoglobinopathy in NHS England. She was the national lead for the UK Haemoglobinopathy Peer Reviews, 2018-2020. She is one of the clinical leads at the Southeast London and South East England Region Haemoglobinopathy Coordinating Centre for Sickle Cell Disesase. She is a trustee of the British Society for Haematology and the UK Forum on Haemoglobin Disorders. Subarna is interested in clinical and molecular research in sickle cell disease and is involved in a number of projects at King’s College London.
Dr Rachel Kesse-Adu is a consultant haematologist who qualified in medicine from Imperial College School of Medicine in 2002 and completed her specialist training in haematology at Kings College Hospital in London in 2012. She has specialist interest in haemoglobinopathies and medical education.
Her particular areas of interest in haemoglobinopathies are cardiorespiratory, chronic pain and urological complications. She runs joint specialist clinics in these areas. She is involved in clinical research in sickle cell disease and is the Training program director for haematology in SE London.