1. 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 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.
• Sub-group representation: Advisory Groups are encouraged to include patients and other interested parties on their relevant sub-groups.
• Stakeholder meetings: Advisory Groups will hold 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 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.

There are five Solid Organ Advisory Groups (Kidney, Liver, Cardiothoracic, Pancreas and Bowel) and, for clinical reasons, the patient groups for kidney and pancreas and for liver and bowel will be combined, and the lead Chair will be the kidney and the liver Chair respectively.

2. Role of Patient Group

2.1 The Patient Group is to provide a forum for members to meet with the Chair of the relevant Solid Organ Advisory Group and the Associate Medical Director for Organ Donation and Transplantation.

2.2 The meetings are intended to provide a forum where

2.2.1 Patients and other interested parties can
seek information from NHSBT
raise any concerns with NHSBT and the Advisory Group on aspects of donation and transplantation
comment on any policies or activities of NHSBT

2.2.2 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

2.2.2.1 Two months prior to the meeting, NHSBT will circulate to members for requests for items for discussion or issues to be raised.

2.2.2.2 NHSBT will ask Transplant Centre Directors and Patient Groups for help in informing all relevant participants of the meeting and inviting their attendance.

2.3 These Terms of Reference serve as a template but should be reviewed and adapted to best serve the needs of the patients for each group.

3. Meetings
3.1 Chairs:

3.1.1. The first meeting will be chaired by the Chairman of the relevant Organ Advisory Group

3.1.2. Members present at the first meeting will be asked to elect a representative to act as co-chair and the elected individual will serve for 3 years.

3.1.3 The Chairs will agree the agenda at least two months before the meeting and ensure that papers are available on the ODT website (www.odt.nhs.uk) two weeks before the date of the meeting.

3.2 Membership

3.2.1 Patients and relevant parties:
It is highly desirable that membership is as wide as possible and will include:
patients
patient's family, carers and close friends
patient groups

3.2.1.1 Patients include those who have a condition affecting the relevant organ and may be pre- or post-transplant.

3.2.1.2 Patient groups may be local or national

3.2.2 Associate Medical Director, Organ Donation and Transplantation; Chair of the relevant Solid Organ Advisory Group and other Advisory Group members who wish to attend.

3.2.3 Others may be co-opted as required

4.0 Agenda

The agenda will be agreed by the Chairs and should reflect the purpose of the meeting. It should include:
Approval of minutes of previous meeting
Review of actions outstanding
Latest Statistics relating to Organ Donation and Transplantation
Issues raised by members
Review of current selection and allocation policies
Review of developments in policies
Date of next meeting

5.0 Administration

5.1 Meetings will be held at least annually but additional meetings can be called at the request of any member.

5.2 Administrative support will be provided by Clinical Support Services, ODT

5.3 The draft Agenda will be circulated at least four weeks in advance of the meeting and members asked to identify issues they wish to be raised and published on the ODT website two weeks in advance of the meeting (see 3.1.3).

5.4 Agreed minutes will be posted on the ODT website

5.5 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.