The Bleeding Disorders priority setting partnership (PSP) is comprised of members from all areas of the health care services and from patients groups and organisations. You can find more details of the individual members and their affiliations below. The aim of the PSP is to identify the 10 most important unanswered questions about bleeding disorders so that we can help direct research into this area and attract funding.
To do this we have formed the PSP in conjunction with the James Lind Alliance (JLA). The JLA is a non-profit making initiative which is a branch of the National Institute for Health Research (NIHR). The experience of the JLA with conducting PSPs is helping us shape and organise this project. You can find details about the JLA and other PSPs here.
Our steering committee
Charlotte is a Health Economist at HCD Economics, a consultancy based in Cheshire. She has experience working with both the pharmaceutical industry and the NHS. Haemophilia is an area of specific focus, having provided input to the design and dissemination of the European ‘Cost of Haemophilia – a Socioeconomic Survey’ (CHESS) study.
Derek Elston is a semi-retired chartered surveyor in the specialist discipline of Plant and Machinery appraisal who has undertaken assignments in Europe, Middle East and Asia. He has Immune Thrombocytopenic Purpora, a rare bleeding disorder. He is currently a trustees of the ITP Support Association; an advocate board member of the European Haematology Association and the world wide ITP International Alliance.
David Stephensen is a physiotherapist at the Kent Haemophilia Centre and the Haemophilia Centre at the Royal London Hospital. He has more than 25 years’ clinical experience managing children and adults with haemophilia. David is the research lead for the Haemophilia Chartered Physiotherapists Association in the UK, secretary of the Physiotherapy Committee of the European Association of Haemophilia and Allied Disorders, leads the Council for Allied Health Professions Research hub in Kent and is a Visiting Reader in Physiotherapy at Canterbury Christ Church University. David has a strong interest in research with a particular interest in the impact of disease on the biomechanical and neuromuscular aspects of physical performance, and has been awarded several academic training and research grants by the National Institute of Health Research (NIHR).
Dr Kate Khair
Kate has worked in the haemophilia centre at Great Ormond Street Hospital for Children since 1991. Since becoming a state registered nurse, Kate has gained a number of other professional qualifications including state registration in paediatric nursing, a master’s degree in anthropology, a City and Guilds master’s degree in higher levels of practice, several modules in advanced nursing and a PhD in health and social care. She continues to be undertake research into understanding living with bleeding disorders from a child and family perspective and evaluation of health care outcomes.
With first-hand experience of living with severe haemophilia A, Laurence Woollard is passionate about improving patient experience and effecting real change in healthcare services for people with bleeding disorders. He has been extensively involved with patient advocacy in his role as patient representative of the Royal London Hospital Haemophilia Centre and represents the UK’s Haemophilia Society and the European Haemophilia Consortium (EHC) as a youth leader. He is also a youth member of the European Patients’ Forum (EPF) and worked as part of the secretariat in Brussels supporting the development and implementation of key EU-wide initiatives for young patients across a range of chronic disease areas.
At present, Laurence is a freelance project consultant for Haemnet; a research charity working to improve the lives of patients with bleeding disorders through enhancing excellence in clinical practice. He also provides a number of keynote talks on his life with haemophilia to the wider industry.
Liz is the Chief Executive of The Haemophilia Society, the patient organisation for everyone affected by an inherited bleeding disorder. Liz leads the charity in service and information as well as advocacy. With a nursing background and many years working in the charity sector Liz is able to bring the patient voice to the discussions.
Prof. Mike Laffan
Mike Laffan has been a consultant haematologist with a mixed academic and clinical contract at Imperial College for 24 years. Throughout that time he has looked after patients with disorders of blood coagulation as well as conducting research and teaching medical students. Mike was asked by the UKHCDO to set up the bleeding disorders study group and decided the best way forward was to start with a priority setting partnership.
Patrick is a seasoned logistics expert with a career that includes raising funding for several multi-million pound management buyouts and has been recognised in the industry with several awards including the 2014 UK EY Entrepreneur Of The Year program. Patrick is currently Group CEO of the CitySprint Group, recently named in the 2016 Sunday Times Top Track 250 that recognises Britain's most successful private mid-market growth companies.
Prof. Peter Collins
Peter Collins is a professor in haematology at the School of Medicine of Cardiff University and an honorary consultant haematologist at the University Hospital of Wales, Cardiff.
His research interests include acquired haemophilia, prophylactic treatment in haemophilia, factor VIII inhibitors, pharmacokinetics of factor VIII and IX, haemostatic impairment during postpartum haemorrhage and the role of phospholipids in controlling coagulation.
Dr Simon Stanworth
Dr Simon J Stanworth is a Consultant Haematologist for NHS Blood & Transplant at the John Radcliffe Hospital (Oxford University Hospitals Trust), and honorary senior clinical lecturer at the University of Oxford. He is Secretary of the Regional Transfusion Committee for Oxford and Southampton/Hants. His research is centred on clinical indications of blood components, through systematic reviews and clinical studies/trials. One research interest is the management of major bleeding and the role of concentrated sources of fibrinogen.
Dr Susie Shapiro
Dr Susie Shapiro qualified from Oxford University Medical School and trained further in haematology at the Hammersmith, Royal Free and Great Ormond Street Hospitals in London. Her PhD at Imperial College London focused on the structure and function of von Willebrand factor. She worked as a Consultant for a year at Guys and St Thomas’ Hospital London before joining the Oxford Haemophilia and Thrombosis Centre in 2015. She works entirely in the field of haemostasis and thrombosis: haemophilia and other bleeding disorders, thrombosis and anticoagulation.
Dr William McKeown
Dr William McKeown is a 25 year old sufferer of severe Haemophilia A from Bangor, Northern Ireland. He is actively involved in the UK Haemophilia Society, working particularly with youth members He has sat as a patient representative on the UK Bleeding Disorders Clinical Study Group since 2015. William graduated from Queen's University Belfast in 2014 in Medicine (MBBCh BAO) and currently practices as a Core Medical Trainee at Antrim Area Hospital
Jamie is an economist by background. He has worked with public, private and third sectors, including EC and EU, and charities including the World Federation for Haemophilia, European Haemophilia Consortium and the UK Haemophilia Society.
He is currently the health economic lead on an expert panel piloting proof of concept for the development and implementation of the global haemophilia registry. He is also Senior Lecturer in Health Economics at the University of Chester and is a Director of the company HCD Economics Ltd.
Sheela Upadhyaya is an experienced expert facilitator and mentor with over 17 years of experience in the NHS. She has undertaken work in many different areas of the NHS including cancer, dermatology and rare diseases. She has commissioned transplant services (not Kidney) in the NHS in her past role. She supports James Lind Alliance PSPs as a facilitator and has a history of working in situations where she brings together patients, clinicians and other stakeholders to establish common goals and objectives.
Marta has been working in NHS since 2008. She currently works as Southern Haemophilia Network Coordinator and is based in Basingstoke Hospital, where she focuses on improving patient’s experience by simplifying administration processes across the Network. She has experience in coordinating projects like annual conference for Scientific and Academic Coagulation Consortium.
I have been a research and user representative for the NCT for five years and an antenatal educator for six years. In my current role as a registered midwife, I work in supporting women and in exploring ways to improve practice within maternity services.