Terms of Reference for the Cardiothoracic Transplant Patient Group
Background
NHS Blood and Transplant is responsible, amongst other roles, for the development and implementation of selection and allocation policies for those organs donated by deceased donors in the UK. Other areas of responsibility include promotion and securing of an effective transplantation of organs for the health service which also includes advising on clinical and ethical issues, maintaining the national transplant waiting list, monitoring and publishing of outcomes and characterisation of deceased donors for the purposes of transplantation. NHSBT also supports living organ donation.
While NHSBT plays a significant role in the organ donation and transplantation pathways, the delivery of effective donation and transplantation involves many people and organisations, including not only the Intensive Care and Emergency Department clinical staff, the Transplant Centres, Commissioners, national Departments of Health and regulators but also the donors and donor families, patients and their families and carers and patient, lay and professional bodies.
NHSBT is committed to become a world leader in donation and transplantation and, to achieve this goal, stakeholder participation is essential. This engagement will supplement the relationship that designated Transplant Centres have with their own patients and patient groups.
NHSBT has adopted a number of strategies to achieve this end:
- Solid Organ Advisory Groups: these groups which include representatives of all designated UK Transplant Centres, relevant personnel from NHSBT and other stakeholders, will each have two lay members who are recruited and appointed independently. The Solid Organ Advisory Group responsible for the Cardiothoracic Transplant Patient Group is the Cardiothoracic Transplant Advisory Group (“CTAG”)
- Sub-group representation: CTAG is encouraged to include patients and other interested parties in their relevant sub-groups
- Stakeholder meetings: CTAG will hold at least annual stakeholder meetings to seek the views of all interested parties in the development and implementation of policies and practice
- NHSBT is keen to ensure that patients and patient groups have a voice in the work of NHSBT and so will host annual meetings with patients, their families and carers, and recognised patient groups
- NHSBT has developed its website (www.odt.nhs.uk) to provide help and support for the clinicians and other interested parties. This site, which supplements the patient-focused sites, includes all Advisory Group papers, details of policies and outcome data
Role of Patient Group
1 The Cardiothoracic Transplant Patient Group (“CTPG”) is to provide a forum for members to meet with the Chair of CTAG and the Associate Medical Director for Organ Donation and Transplantation.
1.2 Patient Group Meetings are intended to provide a forum for patients and other interested parties to:
- seek information from NHSBT and CTAG
- raise any concerns with NHSBT and CTAG on aspects of organ donation and transplantation (if relevant, these concerns may also be raised with other bodies e.g. NHS England, Department of Health)
- comment on any policies or activities of NHSBT
1.3 NHSBT will seek advice, comments and support for relevant policies that are being developed and/or reviewed seek views on other aspects of organ donation and transplantation provide members with information regarding donation and transplantation
1.4 One month prior to the meeting, NHSBT will circulate to members or requests for items for discussion or issues to be raised.
1.5 NHSBT will ask Transplant Centre Directors and Patient Groups for help in informing all relevant participants of the meeting and inviting their attendance.
1.6 These Terms of Reference serve as a template but should be reviewed periodically and adapted to best serve the needs of the patients for each Patient Group.
Meetings
2 Members will elect a representative to act as Patient Co-chair to work alongside a Co-Chair appointed by CTAG (the latter usually being the CTAG Chair); the elected individual will serve for 3 years.
2.1 The Co-Chairs initial term may be extended at the agreement of the CTAG Chair and NHSBT for further periods as may be deemed suitable, and subject to any expressions of interest from other Patient Group members to fulfil the role of the CTPG Co-Chair, in which case a ballot may be considered appropriate.
2.2 The Co-Chairs will agree the agenda at least three weeks before the meeting and ensure that papers are available for circulation before the planned meeting.
Membership
3 It is highly desirable that membership is as wide as possible and will include:
- Patients (those with a condition affecting the relevant organ, pre- or post-transplant)
- Patient’s families, carers and close friends
- Representatives of other Patient Groups (local or national)
- Other bodies with an interest in Cardiothoracic Transplantation may also be included as required e.g. relevant Charitable organisations.
- Associate Medical Director, Organ Donation and Transplantation
- Chair of the relevant Solid Organ Advisory Group
- Advisory Group members who wish to attend
Agenda
4 The agenda will be agreed by the Co-Chairs and should reflect the purpose of the meeting. It should include:
- approval of minutes of the previous meeting
- review of actions outstanding
- latest Statistics relating to Organ and Tissue Donation and Transplantation
- issues raised by members
- review of developments to policies
- date of the next planned meeting
Administration
5 Meetings will be held at least annually but additional meetings can be called at the request of any member with prior approval of the Co-Chairs
5.1 Administrative support will be provided by Clinical Support Services, OTDT
5.2 Approved minutes will be posted on the OTDT website
5.3 Clinical Support Services will be responsible for seeking help and advice from patients, clinicians and patient groups to ensure that there is awareness of the meeting
