Purpose / role of the group:

1. The role of the Co-ordination Group (NCV) is to work alongside the FACT Patient Liaison Officer to increase patient participation and to strengthen the network of patient/carer groups in the North East and North Cumbria, within the context of good collaboration.
2. The group will share patient feedback information across the ICS to include:
     a. dissemination of information,
b. getting people involved,
     c. sharing lessons learnt.
3. The group was established in April 2021 following collaboration across the region to bid for funding being offered through Coping with Cancer but funded by the Northern Cancer Alliance for 1 year.
4. The aim is to improve the experience of cancer patients aligned to the developing Integrated Care System structure, led by a collaboration of patients, volunteers and Health Professionals.
5. Responsibilities include:
   a. to develop 4 patient groups per ICP working alongside FACT PLO
   b. facilitate patient/carer involvement in their care
   c. to bring together existing cancer user groups involved in cancer services to understand and share current practice.
   d. to listen to, gather and promote action on patients’ / carers’ concerns, suggestions and experiences.
   e. to feedback outcomes to patients/carers and to the people who design and manage cancer services.
6. Expected outcomes from the work of the Group will include:
   a. The Group will provide a regular source of patient/carer feedback information that is disseminated to cancer care organisations across the ICS at least 3 times a year.
   b. Establishing mechanisms to feedback to patients/carers the outcomes from engagement and the response of cancer care organisations at least annually, possibly 6 monthly.
   c. Enhanced and sustainable patient/carer feedback mechanisms. Cancer care professionals will look to the Group for feedback as part of their regular practice.

Membership:

7. Membership of the group is open to nominated representatives from patient /carer groups and health professionals in the NENC Integrated Care System with an interest in Cancer Services.
8. Chair of the group will be the lead person identified during the bidding process in the first year and in subsequent years the chair will be nominated and agreed at the first meeting after the 1 April.
9. There are four Integrated Care Partnerships (ICP) in the region and it is expected that at least 1 patient representative and 1 health professional representative attends from each ICP with a maximum of 4 representatives from any one ICP.
10. The period of membership will be for 1 year in the first instance but this can be extended each year if agreed by the group.
11. The membership of the Co-ordination Group will commit to:
   a. wholeheartedly championing the network across the region
   b. sharing all communications and information across all Co-ordination Group members and the 4 ICP regional Collaborative Groups.
   c. making timely decisions and taking action so as to not hold up the project
   d. notifying members of the Co-ordination Group, as soon as practical, if any matter arises which may be deemed to affect the development of the Network
   e. attending all meetings and if necessary nominate a proxy.

Members of the Co-ordination Group will expect:
   f. that each member will be provided with complete, accurate and meaningful information in a timely manner
   g. to be given reasonable time to make key decisions
   h. to be alerted to identified potential risks and issues that could impact the project, as they arise
   i. open and honest discussions, without resort to any misleading assertions or ambiguity

Roles & Responsibilities
12. A co-ordinator for the group will be identified and will be remunerated in year 1 at a day rate of £150 up to a maximum of 18 days a year. (In year 1 this person is from the group submitting the initial bid for funding and is also the chair for the group.)
13. There will be a chair for the group appointed initially for one year at the first meeting of the co-ordination group after 1 April each year.

Accountability:
14. Individual members of the group are expected to report back to the group/service they represent at the next meeting of their group.

Finances:
15. Available funding will support administration costs, publicity and expenses.
16. Funding will be held by Coping with Cancer and money will be drawn down as expenses are incurred. Any claims should be made to the Group Co-ordinator so an accurate record of all claims can be maintained.

Review:
17. The group will review the relevance and value of its work and the terms of reference Annually.
18. These Terms of Reference may be amended, varied or modified in writing after consultation and agreement by Co-ordination Group members.

Working methods / Arrangement for Meetings:
The group will adopt a shared learning and experience approach and will relate directly to the 4 regional Collaborative Groups.

19. Arrangement for Meetings
    a. meetings will be held bi-monthly on the second Tuesday of the month and there will be a minimum of 4 each year held via video-conferencing (though some members may choose to come together at one venue with the rest via a video link).
    b. the Group will employ someone to provide secretariat for the group.
    c. The meeting will be quorate when at least one person from each of the 4 regional collaborative groups are present. If the meeting is not quorate then no decisions will be made.
   d. Decisions will be made by consensus (i.e. members are satisfied with the decision even though it may not be their first choice). If not possible, the Co-ordination Group chair makes final decision
   e. The Agenda be generated in consultation with the chairs of the 4 regional groups. Items for the agenda should be notified to the Chair or administrator at least 10 working days prior to a scheduled meeting.
   f. Papers will be circulated electronically 5 working days prior to the meeting.
   g. Draft minutes will be circulated within 5 working days of the meeting for amendments and then pending approval may be shared with members of the 4 regional collaborative groups confidentially until approved at the next Co-ordination Group meeting.
   h. Meetings will be in a large group but may from time to time include small breakout groups
   i. Non-members may be invited to group meetings where their particular experience and or expertise is pertinent to the agenda item.

Sharing of information and resources
20. Once agreed by the Co-ordination Group, group members may share information and resources within the Collaborative Groups and the smaller groups linked to it with the support of the FACT PLO
21. Information and resources will be disseminated on the internet via the FACT website. (If agreed by the FACT PLO)