Supporting evidence
Published 21 February 2023
Applies to England
Β© Crown copyright 2023
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Background
The report of the Organ Utilisation Group (OUG) was informed by stakeholders and experts from the solid organ transplant care pathway. Evidence is presented below from the OUG바카라 사이트s stakeholder engagement throughout the evidence-gathering exercise.
These details informed their recommendations, which focused on making the best and most efficient use of available resources across the care pathway, rather than seeking significant additional funding.
Public notes of Organ Utilisation Group meetings
The OUG held its first meeting on 1 July 2021.
Members and observers of the OUG were asked to provide their views on key barriers, successes and priorities for organ transplantation, and the utilisation of organs from deceased and living donors.
Table 1 below provides a summary of responses, grouped into themes:
Table 1: stakeholder feedback regarding barriers, successes and priorities
| Topic | Points raised |
|---|---|
| Barriers | 바카라 사이트 Access to resources (theatres, pathology, novel technology, scout service) 바카라 사이트 Disparities (education, awareness, engagement, geographical) 바카라 사이트 Infrastructure (timing of care pathway, technology, commissioning structure) 바카라 사이트 Workforce (sustainability, education) 바카라 사이트 Culture (transplant teams, public) 바카라 사이트 Risk appetite 바카라 사이트 Trust support |
| Successes | 바카라 사이트 Collaboration (between teams, NHS Blood and Transplant (NHSBT), commissioners, trusts, advisory groups) 바카라 사이트 Data sharing (NHSBT dissemination, UK Transplant Registry) 바카라 사이트 National Organ Retrieval Services 바카라 사이트 Organ offering and allocation schemes 바카라 사이트 Infrastructure (governance, guidance, patient pathway and support, bringing living and deceased donation together) 바카라 사이트 Team commitment 바카라 사이트 Organ donation (바카라 사이트opt out바카라 사이트, family support, engagement) 바카라 사이트 Innovation 바카라 사이트 Living donation (matching runs, altruistic) |
| Priorities | 바카라 사이트 Training and education (improve risk appetite, guidance, culture, transplant teams, public, patients) 바카라 사이트 Sustainability (service, workforce) 바카라 사이트 Resources (finance, access to services) 바카라 사이트 Improve access to proven innovation (machine perfusion, scouts) 바카라 사이트 Data sharing (digital infrastructure; timeliness) 바카라 사이트 Commissioning infrastructure (clear end-to-end approach, benefits realisation) 바카라 사이트 Trust engagement (prioritisation) 바카라 사이트 Listing, matching and allocation systems 바카라 사이트 Increase living donation |
Ways of working
Remit
The scope of the OUG included transplantation of organs from living and deceased donors in adult and paediatric services.
Increasing the number of deceased donors was out of the scope of this review. A large programme of work was underway separately to deliver this, following the publication of the new .
Reporting structure
The OUG chair reported to the Secretary of State for Health and Social Care, maintaining engagement with ministers in the devolved governments. The chair also reported to the then-Chief Executive of NHS England and Improvement for actions requiring commissioning activity.
Updates for information and feedback were provided to the following organisations as appropriate:
- UK commissioning boards
- NHSBT Board
- National Organ Donation Committee
- NHSBT Solid Organ Advisory Groups
- British Transplantation Society
- Royal Colleges of Surgeons
- Academy of the Royal Colleges
- Faculty of Intensive Care Medicine
The OUG established 4 working subgroups on:
- standards
- commissioning
- workforce
- systems architecture and data handling
The chair and membership of which included a wide range of stakeholders outside of the OUG.
These subgroups identified and engaged with relevant stakeholders. The evidence base was collated toΒ develop recommendations to the OUG. Key themes from subgroup recommendations included:
- greater patient-centred focus, involvement, choice, information and education along the whole care pathway, including patient-reported outcomes measures (PROMs) and patient-reported experience measures (PREMs)
- collaboration with other units and centres through a buddying scheme, and building on lessons learned through coronavirus (COVID-19)
- the use of innovation and novel technologies, such as machine perfusion
- standardisation, strategic direction and leadership with national oversight
- improved access to data to inform patient and clinical decision-making and resource allocation
- workforce sustainability, resilience and training to meet current and future needs
Ethical considerations in organ utilisation
A representative from the Nuffield Council of Bioethics presented the ethical considerations of organ utilisation to the OUG.
The following points were raised:
- the relationships influencing the donation process are important, and include family members, health representatives and the NHS
- context of pressures due to ongoing limited resources and COVID-19 means high pressures on staff and systems 바카라 사이트 sometimes there are no 바카라 사이트good바카라 사이트 options
- practices and procedures aimed at maximising the availability of organs, such as 바카라 사이트opt out바카라 사이트 legislation, have implications for utilisation
- the importance of demonstrating trustworthiness through transparency, accountability and equitable access
Stakeholder engagement
Members of the OUG discussed the need for widespread stakeholder engagement and consultation. This included:
- patient focus groups
- an online call for evidence
- site visits
- stakeholder forums and workshops
- one-to-one meetings with stakeholders
- written updates
- international engagement
Patient바카라 사이트s experience
Key themes from discussions with patient focus groups are captured in table 2 below.
Table 2: discussion points from patient representatives
| Themes | Discussion points |
|---|---|
| Disparities in access | The following key points were raised: 바카라 사이트 it is important to ensure there are no disparities in referral practices across the country that influence the likelihood of being listed for transplant in a timely manner 바카라 사이트 disparity in the level of care offered between different centres 바카라 사이트 socio-economic disparities can impact the likelihood of receiving a transplant 바카라 사이트 for example, patients and their carers may not be able to afford to stay in hotels during the assessment process, which impacts on their likelihood of receiving a transplant 바카라 사이트 delays in corrective procedures influence patient outcomes 바카라 사이트 바카라 사이트postcode lottery바카라 사이트 must be avoided for bridging services such as ex-vivo lung perfusion (EVLP) |
| Patient and carer support | The following key points were raised: 바카라 사이트 it is important that good psycho-social support is available for patients and their families pre and post-transplantation 바카라 사이트 services need to have clear roles and responsibilities at every stage of the care pathway to ensure that patients do not 바카라 사이트fall through the net바카라 사이트 post-transplant |
| Communication | The following key points were raised: 바카라 사이트 concern about whether the right information is shared between the various teams who provide care pre- and post-transplant 바카라 사이트 patients need easy and effective ways to contact the right services to support them in managing their condition 바카라 사이트 improved communication and collaboration are required between teams to support the continuity of care through the different stages of the transplant service 바카라 사이트 communication should be timely, easily accessible and in a format that supports patients to take active decisions about their own care 바카라 사이트 patients post-transplant may be unwilling to raise problems or concerns |
A patient survey was shared in February 2022 to further gather patients바카라 사이트, families바카라 사이트 and carers바카라 사이트 experiences. This included hearing from patients actively waiting for transplant and those who have received an organ transplant, and capturing the experiences of patients, families and carers with 바카라 사이트less heard voices바카라 사이트.
There is a need to provide transplant services with compassion and care, demonstrating valuing equality and diversity in action.
Women바카라 사이트s voices need to be heard more often and louder in transplant services, and where improvements are required.
Online call for evidence
The OUG issued an online public call for evidence asking respondents for their feedback on the transplant service. This was actively shared with patient, donor and clinical communities.
Seventy-four individuals responded to the survey바카라 사이트. Of these:
- 107 challenges were reported (plus 7 not applicable to OUG remit)바카라 사이트
- 73 opportunities were reported (plus 4 not applicable to OUG remit)바카라 사이트
A large proportion of respondents were transplant surgeons and physicians (n = 53) situated UK-wide.
The OUG discussed the emerging themes and principles that arose from the evidence:
- systems to be in place to increase risk appetite
- standards for end-to-end pathway and access to this pathway
- workforce resources to encourage the retention and recruitment of staff
- board ownership through the introduction of key performance indicators (KPIs)
- removing disparity in access through the simplification and standardisation of commissioning
- machine perfusion as an emerging field that requires more research
- education and learning from COVID-19 바카라 사이트 educating patients, families and staff
- focus on social and psychological patient support
- encouraging more collaboration across centres 바카라 사이트 a key takeaway following the pandemic
- culture and improving ownership through the standardisation of pathways
- the possibility of introducing KPIs for transplantation and creating fixed standards
- potential for virtual assessment and how technology could manage this to reduce travel and waiting times for patients
Site visits
As shown in Figure 1 below, the OUG undertook 10 site visits across England at transplanting centres in Newcastle, Leeds, Manchester, Nottingham, Birmingham, Cambridge, Bristol and London (the Royal London Hospital and King바카라 사이트s College Hospital), and non-transplanting centres in Bristol and Southampton.
Figure 1: sites visited across England
Different challenges were faced by transplant centres specialising in different organ types. Common themes and concerns arose across all centres regarding:
- workforce capacity and resilience
- access to theatres and intensive care units
- the need to improve access to data to inform patient and clinical decisions
- the need for improved minimum standards and monitoring against best practice
- the need for improved collaboration and streamlining of processes
Stakeholder forum and workshop
The OUG held a stakeholder forum in October 2021 and workshops in January 2022. A large proportion of delegates were transplant surgeons, with charities, nephrologists and specialist nurses for organ donation also having high representation.
Key themes from these discussions included:
- lack of capacity and resources
- disparities in access and care
- the need to improve shared learning and address cultural differences between units to drive improvements
- incentivising transplant services and promoting transplantation as a careerΒ 바카라 사이트
- empowering patients to take an active role in their own care
- streamlining the commissioning processΒ 바카라 사이트
- psycho-social supportΒ 바카라 사이트for patients pre- and post-transplant, as well as for staff
International meetings
The OUG spoke to organ transplantation and utilisation experts in Canada, the US, Spain, the Netherlands, Austria and Australia. Points raised are shown in table 3 below.
Table 3: themes from international meetings
| Topic | Points raised |
|---|---|
| Similarities | International experts highlighted the: 바카라 사이트 need to maximise utilisation potential 바카라 사이트 importance of addressing organ risk appetite and centre variation in organ acceptance A shared issue between experts was workforce burnout and recruitment issues. |
| Lessons learned | Lessons learned included focusing on: 바카라 사이트 monitoring adherence to best practice 바카라 사이트 setting measures to incentivise 바카라 사이트 disseminating benchmarked activity data to inform and drive local improvements 바카라 사이트 supporting those who take calculated risks 바카라 사이트 providing training programmes and sharing experiences |
| Innovation | Innovation adopted by international experts included: 바카라 사이트 the use of machine perfusion to improve the number and quality of organs available for transplant 바카라 사이트 predictive analytics regarding the outcome of an organ into a named recipient to address risk aversion 바카라 사이트 GPS tracking for organs in transit to support management of logistics 바카라 사이트 shared decision-making with patients |
OUG and subgroups 바카라 사이트 membership and observers
With thanks to all members of the OUG and its subgroups who engaged throughout this commission.
Organ Utilisation Group 바카라 사이트 membership and observers
Table 4 below provides a list of all organ utilisation group members.
Table 4: OUG members
| Role | Title | Name | Organisation | Organ specialism | Location |
|---|---|---|---|---|---|
| Chair | Professor Sir |
Steve Powis | NHS England (NHSE) | Not applicable | England |
| Deputy chair | Professor | John Forsythe | NHSBT | All | UK |
| Trust chief executive | Mr | Julian Hartley | Leeds Teaching Hospitals NHS Trust | 바카라 사이트 Liver 바카라 사이트 Kidney |
Leeds |
| Trust chief executive | Mr | Stephen Posey | Papworth | Cardiothoracic (CT) | Cambridge |
| Critical care clinical director | Dr | Gus Vincent | Newcastle | All 바카라 사이트 intensive care | Newcastle |
| Organ utilisation 바카라 사이트 abdominal | Mr | Chris Callaghan | Guys and St Thomas바카라 사이트 | 바카라 사이트 Kidney 바카라 사이트 Pancreas |
London |
| Organ utilisation 바카라 사이트 CT | Mr | Steven Tsui | Papworth | 바카라 사이트 Heart 바카라 사이트 Lung |
Cambridge |
| Recipient transplant co-ordinator | Ms | Moira Perrin | University Hospitals Birmingham | Liver | Birmingham |
| Director of operations | Dr | Maurice Hakkak | University Hospitals Birmingham | All | Birmingham |
| British Transplantation Society (BTS) | Mr | Krish Menon | BTS | Liver | UK |
| Living donation | Ms | Lisa Burnapp | 바카라 사이트 BTS 바카라 사이트 NHSBT |
바카라 사이트 Kidney 바카라 사이트 Liver |
UK |
| Lay representative | Mr | Shamik Ghosh | NHSBT | Not applicable | London |
| Patient representative 바카라 사이트 kidney | Ms | Hilaria Asumu | Not applicable | Kidney | Manchester |
| Patient representative 바카라 사이트 CT | Ms | Jessica Jones | Not applicable | Lung | Birmingham |
| Non-transplant centre | Dr | David Makanjuola | Epsom and St Helier | Kidney | Epsom |
| Departmental representative | Mr | Michael Gallagher | Department of Health and Social Care | Not applicable | England |
| Departmental representative | Ms | Maria Nyberg | Department of Health and Social Care | Not applicable | England |
| Lead secretariat | Ms | Ms Claire Williment | NHSBT | Not applicable | UK |
| Secretariat 바카라 사이트 data and statistics | Ms | Lisa Mumford | NHSBT | Not applicable | UK |
| Secretariat support | Mr | Tom Nicholson | NHSBT | Not applicable | UK |
| Secretariat support | Ms | Andrea Pereira | NHSBT | Not applicable | UK |
| Secretariat support | Ms | Cathy Hassell | NHSE | Not applicable | England |
Table 5 below provides a list of all organ utilisation group observers.
Table 5: OUG observers
| Role | Title | Name | Organisation | Location |
|---|---|---|---|---|
| Devolved government representative | Ms | Caroline Lewis | Welsh 바카라 사이트 | Wales |
| Devolved government representative | Ms | Joan Hardy | Department of Health (Northern Ireland) | Northern Ireland |
| Devolved government representative | Ms | Sharon Grant | Scottish 바카라 사이트 | Scotland |
| England specialised commissioning | Ms | Fiona Marley | NHSE | England |
| England specialised commissioning | Ms | Sarah Watson | NHSE | England |
| Commissioning | Ms | Anushka Govias-Smith | NHS Scotland | Scotland |
| Commissioning | Mr | Stuart Davies | NHS Wales | Wales |
| Commissioning | Ms | Teresa Magirr | NHS Northern Ireland | Northern Ireland |
| Commissioning | Ms | Karen Quinn | NHSBT | UK |
| Stakeholder forum chair | Ms | Fiona Loud | Kidney Care UK | UK |
| Stakeholder forum chair | Prof | Deirdre Kelly | NHSBT | UK |
OUG subgroup leads
Table 6 below provides a list of all subgroup leads.
Table 6: subgroup leads
| Subgroup | Role | Name | Organ specialism | Location |
|---|---|---|---|---|
| Standards | Co-chair | John Forsythe | All | UK |
| Standards | Co-chair | Jessica Jones | Lung | Birmingham |
| Commissioning | Co-chair | Cathy Edwards | NHSE commissioning | England |
| Commissioning | Co-chair | Shamik Ghosh바카라 사이트― | Not applicable | England |
| Workforce | Co-chair | Steven Tsui | Heart | Cambridge |
| Workforce | Co-chair | Liz Fenton | Not applicable | England |
| Systems architecture and data handling | Co-chair | Wendy Clark | All | UK |
| Systems architecture and data handling | Co-Chair | Lisa Burnapp | Kidney | UK |