Organ donation and transplantation saves the lives of thousands of people every year, and NHS Blood and Transplant (NHSBT) is responsible for the support, facilitation and safe delivery of organs and tissues for transplantation. The organisation also manages the NHS Organ Donor Register and National Transplant Register, which record individuals' wishes regarding organ donation and which hold the details of people waiting for a transplant.
There are currently around 6000 people on the UK transplant waiting list, and there is an acute shortage of donors and organs for transplant. This means that last year more than 400 people died while waiting for a transplant, equivalent to around three people every day.
The NHSBT's organ donation services teams are the front-line staff who manage organ donation on a daily basis. The UK is divided into a total of 12 regional teams providing a 24-hour service to support and facilitate organ donation. The teams consist of operational managers and specialist nurses working in hospitals alongside allocated clinical leads for organ donation and local hospital committees. Together, they are tasked with ensuring that every opportunity for organ donation is fully explored and considered.
The roles and responsibilities of specialist nurses in the organ donation services teams within NHSBT are continually evolving. Today, there are four specific roles within the organ donation remit, each one with its unique challenges and opportunities. These are:
These roles are all pivotal in delivering a professional and caring organ donation service.
Specialist requester/family care role
One of the key challenges facing organ donation is ensuring both that families of potential donors fully understand the information given to them about organ donation and that end-of-life care is dealt with in a caring, compassionate manner, taking into account each individual family's needs.
In recent years, there has been a renewed focus to the consent conversation with the family, which is particularly important given the acute lack of organs for transplantation and the move towards an opt-out system in the UK. An opt-out system will mean that all adults (exclusions will apply) will be considered as having agreed to donate their organs when they die, unless they have recorded a wish not to donate, known as ‘opting out’. This system was introduced in Wales in 2015 and in Jersey in July 2019. The next article will discuss this law change in more detail.
The specialist requestor and family care nurses support families in these conversations. The advanced communication skills of these nurses enable them to explore misconceptions and beliefs with families, as well as the grief processes that inhibit them from making an informed decision about organ donation. These nurses work directly with families and they are able to provide extensive and consistent support to the families of potential donors.
Because they then hand over to on-call specialist nurses to progress the actual organ donation once consent is taken, they have time to communicate with families without time constraints in order to explore any end-of-life concerns and ensure the families have all the information they require in regards to organ donation to allow them to make a decision at a time that is right for them.
Specialist requestor and family care nurses also support clinical teams and families throughout the initial stages of organ donation.
Specialist requester nurses participate in an on-call rota where they will on occasion carry out the specialist nurse–organ donation role outlined below, to maintain their skills across the entire donation pathway.
The family care role is similar to the role of specialist requester, but it does not include the on-call aspect.
Specialist nurse–organ donation role
This role is involved in the support and facilitation of the entire organ donation pathway, with an emphasis on working within the critical care areas of UK hospitals. These specialist nurses build relationships with clinical staff to ensure that organ donation is considered in every case where a patient has the potential to help save lives. Working as an embedded nurse alongside clinical nursing and medical colleagues, the specialist nurse–organ donation educates and raises awareness about the importance of ensuring that organ donation is a usual part of end-of-life care within critical and emergency care areas.
The specialist nurse–organ donation supports the clinical team in all elements of the process, approaching families for donation when a specialist requestor nurse is not available and, in all cases, supporting teams once the specialist requestor nurse has handed over and donation is proceeding.
They work to ensure that all patients are referred appropriately and assess suitability for donation, supporting both the patient's and the family's wishes as relatives consider the options around end-of-life care. As part of the process, specialist nurse–organ donation undertake a comprehensive patient assessment and characterisation, and liaise with the operations team to ensure that the offer and allocation of organs is made to recipients most in need of a transplant. Finally, they support and co-ordinate the organ retrieval process.
In addition, the specialist nurse–organ donation plays a key role in ensuring that, where consent for donation has been gained, the function of the organ prior to retrieval is maintained and supported, to ensure the best outcome possible while working within acceptable ethical boundaries.
Within every hospital, the specialist nurse supports the work of organ donation committees, which are tasked with the development of hospital policy, ensuring that best practice is followed and engaging with all stakeholders to promote awareness of organ donation.
Professional development specialist
This role is an opportunity for specialist nurses with an interest and experience in education to move to a role that supports the training and professional development of new and existing specialist nurses, medics and other interdisciplinary staff throughout the UK. There are national roles that lead on the specialist nurse training programme that is described below.
A regional professional development specialist (PDS) is embedded in each organ donation operational team. The PDS works closely with team managers and specialist nurses, providing training and development for all staff through a variety of methods, including sharing practice, role shadowing, and delivering responsive targeted discussion and training.
The national PDS team has developed competency documents for specialist nurse–organ donation, specialist requestor and family care nurses, which apply the 70/20/10 model of learning and development. This is a model of learning developed by Morgan McCall, Robert Eichinger and Michael Lombardo at the Center for Creative Leadership (Lombardo and Eichinger, 1996), whereby 70% of the learning is experiential ‘on-the-job’ training, 20% comes from learning from others, and 10% from formal theoretical training.
Specialist nurse training
All specialist nurses embark on a comprehensive training programme in the initial months of their employment within the NHSBT team. This is a modular programme of learning that includes the use of forum theatre, actors and clinical simulation, with the aim of developing skilled, autonomous specialist nurses. Forum theatre is a method of playing out scenarios taken from real experiences as a group, with anyone in the group being able to stop and start the scenario at any point and suggest different ways/language to move it forward, as opposed to conventional one-on-one role play, which can be seen as intimidating (Middlewick et al, 2012).
All specialist nurses have a 6-month probationary period during which they work with a mentor in their regional team, as well as working closely with a regional PDS. Depending on their previous employment, they will participate in 4–5 residential modules spread over 3–5 days. Nurses who do not have any critical care experience will initially undertake a 3-day critical care module covering aspects of nursing using the ABCDE model. This covers ventilation, blood results, specialist drugs utilised within critical care, and the physiology of the body's systems, including the cardiovascular, respiratory and renal systems.
Nurses then undertake a placement within a local intensive care unit and complete an associated set of competencies. Three further modules lasting 5 days each cover all aspects of the donation journey, including donor characterisation, advanced communication techniques, how to approach families about organ donation and the retrieval of accepted organs prior to transplantation.
The final module takes place within one of four high-fidelity simulation centres throughout the country, where nurses are taken safely through a simulation of various aspects of the donation process: from initial referral of a patient from an intensive care or emergency department, through to sensitive and challenging family conversations and participation in the theatre. Participating in simulation-based training helps to increase the confidence of the specialist nurse. While this is not utilised as an assessment, it allows the individual to self-assess which aspects of the role they need to focus on for the remaining time of the training period to ensure that they become safe, competent and confident practitioners.
Other training and development offered by the PDS team for organ donation staff are mentorship, facilitation skills, presenting skills and influencing skills.
Supporting nurse roles
There is also a variety of other support and lead nursing roles that assist the specialist nurses both operationally and strategically. These include team and regional managers who support the regional operational teams. Lead nurses work nationally with specific remits, which include paediatric and neonatal donation, diversity and equality, recipient co-ordination, family aftercare and research.
The nursing roles in organ donation are challenging, but they are hugely varied and rewarding: the ultimate reward is the opportunity to save lives on a daily basis.