Potential for development of haemophilia link nurse role within UK hospitals

Abstract

Link nurses are practising nurses with an expressed interest in a given specialty, with formal links to clinical nurse specialists and other specialist staff. The role involves attending meetings to discuss ideas and new developments, and relaying findings to other ward nurses to improve their practice. Such nurses are common in many specialties such as diabetes and tissue viability. In haemophilia, the role has the potential to enhance the care of haemophilia patients on general hospital wards. In April 2012, a focus group of five haemophilia nurses was convened to discuss their experiences of 'link nurse' programmes within district general hospitals and the potential value of developing the haemophilia link nurse role, and to consider the materials needed to support such role development. It was agreed to test whether other haemophilia nurses perceived such a need by means of a short five-item questionnaire devised by the group and made available to all members of the UK's Haemophilia Nurse's Association via Survey-Monkey. Final responses from 59 haemophilia nurses across the UK have been analysed. Most nurses agreed that there was value in the development of a haemophilia link nurse role within UK hospitals and thought their trusts would support it. While barriers and potential downsides were acknowledged, this was seen as a useful way of sharing information and knowledge with colleagues from different specialties and of raising awareness of bleeding disorders among the general nursing community. Haemophilia nurses should coordinate the development of a Haemophilia Link Nurse training and education pack.

The patient gene therapy journey: Findings from qualitative interviews with trial participants at one UK haemophilia centre

“…At present in the UK, people with haemophilia are usually looked after in comprehensive care centres or haemophilia treatment centres [27,28] . Care is frequently delivered by a multidisciplinary team coordinated by specialist nurses [27] , which for optimal care should include a haematologist, physiotherapist, orthopaedic practitioner, occupational therapist, psychologist, social workers, a counsellor and nurses [15,29] . The need to fully understand gene therapy is therefore not limited to haematologists and research teams but must extend to the full multidisciplinary team.…”

“…Our interviews were conducted by a clinical nurse specialist involved in day-to-day care. Nurses in particular are critical and already play a central coordinating role in delivering comprehensive care for PwH and helping to promote adherence [16,27,28,30,31] . It is well known that nurses are able to foster good relationships with patients, and that patients are often more candid with nurses than they may be with doctors.…”

Haemophilia nursing practice: A global survey of roles and responsibilities

“…Nurses who are educated to degree level are known to have a positive impact on patient experience, outcomes and safety [3]. Advanced nursing practice, for example through supporting patients and families [4], promoting haemophilia care within hospital environments [5], delivering nurse-led clinics [6] is known to have a significant impact on patient care and outcomes [7]. Supporting development of haemophilia nurse advanced practice at an international level is possible through on-line nurse education, which is available in the United States of America [8].…”

Influencing factors on the functional level of haemophilic patients assessed byFISH

“…Also, the older the patients are, the less care they will have about the home care . Link nurses were introduced to support and educate haemophilic patients .…”