Haemnet began as an online professional network (www.haemnet.com) for the nurses and health care professionals who manage people with haemophilia and inherited bleeding disorders. At the outset, Kate Khair and Mike Holland created the site for members of the Haemophilia Nurse Association to share experiences. Before Haemnet, when a haemophilia nurse needed advice or encountered a “difficult-to-manage” patient, he or she would phone a friend for advice. Now, those conversations also take place on Haemnet with more voices contributing, to the benefit of the whole community. What began as a UK-initiative quickly spread across the worldwide haemophilia community: now more than 450 nurses and physiotherapists from around the world are registered on Haemnet and a growing number of psychologists and social workers.
In 2013, in response to the views of members of the Haemophilia Nurses Association at their AGM, Haemnet became a registered charity with the aim of providing education and collaborative research opportunities for the haemophilia multidisciplinary care team. Haemnet supports a vibrant and interactive community of nurses, physiotherapists and allied health care professionals sharing knowledge, experiences and engaging in research that enables people affected by bleeding disorders to live well.
Working with members of the community, we have secured a number research and service development grants through open competition. These have included grants from Pfizer to coordinate the SO-FIT study (the first haemophilia nurse and physiotherapist collaborative study), and from the Burdett Trust for Nursing to develop a nurse-led initiative to improve transition for young people with bleeding disorders by reviewing current practice, agreeing outcome measures, delivering and evaluating a patient-led development programme. In addition, we have secured grant funding from Roald Dahl’s Marvellous Children’s Charity, Baxalta and Novo Nordisk.
The outputs and outcomes of our projects are shared with practitioners through the web site and through The Journal of Haemophilia Practice (www.haemjournal.com). Haemnet launched this open-access, online journal for haemophilia care professionals in 2014. The journal is currently supported by charitable donations from Sobi, Octapharma, Pfizer and Grifols.
Haemnet continues to run the annual conference alongside a growing number of haemophilia-specific and professional development courses, which sit within the Haemnet Academy. These courses are the result of listening to members in the context of the future of haemophilia care and identifying areas for development. These include:
- The “Contemporary Care of People with Bleeding Disorders”, a three-day residential training course for health care professionals
- ASPIRE, a 6-8 month leadership development programme.
- A writing skills workshop, a one-day practical event.
Day-to-day management of Haemnet is the responsibility of Mike Holland (Director) with strategic development support from Sandra Dodgson. The charity is overseen by the Board of Trustees – Kate Khair, Carl Michel, Debra Pollard, Susan Hook, and Cathy Harrison.
Kate Khair is Consultant Nurse Great Ormond Street Hospital for Children NHS Trust, London, and Visiting Professor of Health and Social Care at London South Bank University.
Since becoming a state registered nurse in 1981, Dr Khair 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. Dr Khair has worked in the haemophilia centre at Great Ormond Street Hospital for Children since 1991. The nurse consultant role has 25% protected academic time, which continues to be used to better understand living with bleeding disorders from a child’s perspective and evaluation of health care outcomes. Dr Khair is an advocate of the nurse’s role in the multi -disciplinary team, is the chair of the UK Haemophilia Nurses Association and secretary of the nurses committee of the WFH and the Editor-in-Chief of The Journal of Haemophilia Practice.
Mike Holland graduated in physiology and biochemistry before starting a career in medical publishing, working on a range of academic and news based publications. In 1997 he became a freelance medical and health care writer/editor, working with professional organisations, pharmaceutical and public relations companies, medical education agencies and charities, preparing materials for healthcare professionals, patients and the media. He has written several books, many monographs and is the originating author of more than 45 articles published in peerreviewed journals. He began working in haemophilia in 2009 and the following year established haemnet.com, a professional network for nurses and health care professionals who treat people with haemophilia and inherited bleeding disorders. Through Haemnet, he runs the annual conference of the Haemophilia Nurses Association, as well as a growing range of haemophilia-specific and professional development training courses. He is also the Managing Editor of The Journal of Haemophilia Practice (www.haemjournal.com), the open-access, online journal for haemophilia care professionals launched by Haemnet in 2014.
Sandra Dodgson is a strategic development specialist with a track record of working with groups to achieve shared purposes that make a real difference for the people who use and deliver services. Most recently, she was the strategic development director at Bridge Mental Health, a charity that supports people to achieve greater independence and mental wellbeing. As a member of the executive team, she contributed significantly to its growth and led on development of the service user led recovery college based in the local community. She has also worked in the Department of Health supporting ‘policy into practice’, the third sector in drug and alcohol services, and has successfully run her own consultancy business, advising charities, central government departments, local councils and national professional bodies. Sandra also works in her own local community facilitating local voices to be heard by the local council and other statutory / governing bodies. She is also a published author of various articles on ‘values’ and ‘governance’ within and across organisations.
Sandra is a strategic development specialist experienced in enabling leaders to work more effectively with their partners in complex and challenging environments. She enjoys supporting people and organisations to explore ‘new thoughts’ and take different paths.
Laurence Woollard is passionate about improving patient experience and effecting real change in healthcare services for people who live with rare disorders. With his first-hand experience of living with severe haemophilia A, Laurence works hard to raise awareness and to champion the rights of patients with bleeding disorders.
For more than two years Laurence has been extensively involved in patient advocacy and engagement within the rare disease community, both at local and international levels. He has served as the patient representative of the Royal London Hospital Haematology Centre within the North London Adult Haemophilia Network (NLAHN). He has represented the UK’s Haemophilia Society and the European Haemophilia Consortium (EHC) as a youth leader at international events and workshops. As a youth member of the European Patients’ Forum (EPF) he 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. Laurence sees his role as translating the voice of the patient into actions that improve service quality and care.
Laurence also has experience in membership development for the UK Council for Psychotherapy (UKCP), the professional body representing psychotherapists and psychotherapeutic counsellors.
As a social network based website, all users of Haemnet must follow the Community rules:
- Content must be civil and tasteful
- Content must be constructive and polite, not mean-spirited, rude or disrespectful or with the intention of causing trouble or needless anxiety to others
- Unlawful, harassing, bullying, defamatory, abusive, threatening, harmful, obscene, profane, sectarian, sexually oriented, racially offensive or otherwise objectionable material is not acceptable and will be removed
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- No advertising or promoting unless approved by the site moderators
- Content containing languages other than English may be removed unless allowed in the relevant local house rules and/or at the discretion of site moderators
- No impersonation or deliberate acts of false identity, and no accessing the accounts of other users to penetrate or attempt to penetrate the site security measures
- No inappropriate user names
- Web site addresses can only be posted at the discretion of site moderators
- No uploading of content that contains viruses or other harmful programs
- Deliberate misuse of the complaints facility is not permitted. If you persist in doing this, your account may be suspended or closed
Haemnet contains information, advice and guidance to help healthcare professionals who manage patients with bleeding disorders. It is intended primarily for use within the UK but users from elsewhere may sign up and use the site. However, all users are advised that practices may vary by country, even within the UK.
Every effort has been taken to ensure the accuracy of the information held in these pages. Information on the website has been compiled from professional sources, but its accuracy cannot be guaranteed. The contents contained of the site are regularly reviewed and are naturally subject to change from time to time as required.
Use of the information and data contained on the site is at your own risk. It is your responsibility to check the accuracy of relevant facts and information before entering any commitment based upon them. Haemnet and its owners cannot be held responsible for any action taken as a result of viewing or downloading any material on this site.
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