I am a consultant haematologist at Oxford University Hospitals NHS Foundation Trust and an Honorary Senior Clinical Lecturer at the University of Oxford.  I am the Rare Inherited Anaemia Lead on the National Haemoglobinopathy Panel.  My main interests are haemoglobinopathies and rare inherited anaemias, and in particular the genetic investigation of inherited anaemias, including whole genome sequencing.  I am dedicated to using patients’ views to guide how research in conducted in haematology and coordinating best practice care in red cell disorders at the European level. I lead quality of life studies in sickle cell disease as well as novel ways of improving compliance, patient understanding and patient pathways for high quality care.

Paediatric Haemoglobinopathy Nurse Specialist Oxford and Thames Valley

Lesley is the lead paediatric haemoglobinopathy nurse for Wessex and Thames Valley HCC and is also leading on their education strategy. She is a registered adult and paediatric nurse and has 30 years nursing experience both in the acute and community environments, now specialising in Haemoglobinopathies. Being a member of the NHR steering committee enables her to support the paediatric patients; focusing on paediatric standards and equity of care.

Department of Haematology  , Manchester  Royal Infirmary.

I am a haematology Consultant at Manchester  Foundation Trust  University Hospitals and HCC lead for  North of England thalassemia and Inherited Rare Anaemia. I am also the adult Thalassemia lead with National Haemoglobin Panel.

Some of my areas of interest include increasing clinical research portfolio in red cell disorders in the North West  ( NW ) and overseeing the implementation of genomic medicine service in the NW for red cell disorders.

One of my goal  with NHR is to ensure the interest of patients with sickle cell,  thalassemia and Inherited Rare Anaemia  from the North are represented on the NHR.

Red cell Disorders Unit
Department of Haematology University College London Hospitals

I am a consultant haematologist working at UCLH and NHS Blood and Transplant and am co-theme lead for the UCLH BRC Non-Malignant Haematology Theme. I represent NHSBT and the Haemoglobinopathy Co-ordinating Centre “ The Red Cell Network” on the NHR.  I am the clinical lead for the paediatric red cell service at UCLH and its  research arm as well as working within the adult haematology team. At NHSBT I lead for haemoglobinopathies.  I have a keen teaching interest and a varied research portfolio. My primary research interest is in genomically-informed AI-driven precision blood matching which hopes to provide precision matched blood to those with transfusion dependent anaemias to prevent complications from transfusion, improve clinical outcome and provide a more informed and targeted donor recruitment and selection paradigm to meet the needs of our patients.

Brigit Greystoke is a consultant haematologist in Newcastle upon Tyne and clinical lead for the North East England Specialist Haemoglobinopathy Team. She has a long standing interest in rare diseases and is particularly interested in how people manage their illnesses without a local support network. She joined the NHR committee to make sure that patients who live a long way from major haematology centres can get the best treatment for their conditions.

Tim is an operational manager for the Haematology Department at King’s College Hospital in London and, with David Kafuko, co-ordinates the Data Managers’ subcommittee of the NHR. The data mangers enter the majority of data into the NHR, ensuring it is complete and accurate and able to drive improvements in patients’ care and quality of life. The subcommittee strives to improve processes to make this work more efficient and effective. Tim previously spent 20 years in IT management for a global bank and prior to that, the conservation of medieval wall paintings.

LEEDS BUT REPRESENT A NATIONAL CHARITY CALLED DBAUK

I am a busy mum of 4 with a child who has diamond blackfan anaemia. I am a trained children’s nurse and I currently work in with the primary care development team in the Leeds GP Confederation. I am on this panel to ensure fair and equitable representation of the patients and carers of people with a heamoglobinopathy condition. I am passionate about supporting others to have a voice and co-produce health plans that are in the interest of the families and people who have to manage their condition effectively.

National Senior Programme of Care Manager, NHS England and NHS Improvement, Specialised Commissioning

Sharon began her NHS career working at Bradford District Headquarters and has had the privilege to work across a number of different organisations over those 30 years.  Sharon now works in the National Blood and Infection Programme of Care (PoC) from January 2020, and since September 2020 has been the senior PoC Manager in the team. The PoC has commissioning responsibility for services such as Haemoglobinopathy, HIV, Infectious Diseases, Immunology ad Allergy, Bleeding Disorders and BMT and she is passionate about delivering high quality services, reducing health inequalities for patients across the population they serve.

Prior to this she has worked across a range of commissioners, such as the North of England Region  commissioning Women’s and Children’s services, the Yorkshire and Humber region – commissioning Cancer and Blood and Infection services.  Airedale, Wharfedale and Craven Clinical Commissioning Group and Bradford and Airedale tPCT commissioning services ranging from Cancer, maternity, long term conditions etc.. She has an MSc in Leadership, Management and Change in Health and Social Care and has recently passed the Nye Bevan Leadership Programme.

Clinical Information Manager – National Specialised Commissioning Business Intelligence and Informatics Team, NHS England and NHS Improvement

Sally is a member of the National Haemoglobinopathy Registry Steering Group, representing NHS England as part of her role working with clinical registries linked with a specialised service.

She worked in self-management of long-term conditions for over a decade before moving into the arena of health information and analysis, as the Evidence Manager for the Independent Review of Children’s Cardiac Services. She took up the role of Clinical Information Manager NHS England’s Specialised Commissioning Directorate in 2018.

She is passionate about ensuring that data works for and in the service of patients. Guiding and supporting the complete ‘renovation’ of the National Haemoglobinopathy Registry to do this significantly more effectively has been the most rewarding part of her current role.

Dr Rob Hollingsworth is the managing director of MDSAS. He has an MSc and PhD in Health Informatics, is a Chartered Information Technology Professional (CITP), Chartered Software Engineer (CEng) and Member of the British Computer Society (MBCS), sitting on its Health Informatics Committee.  He has over twenty-five years experience of delivering large-scale national and international healthcare IT projects.