About Us and Our Aims
People affected by cancer – patients, carers, family and friends – have an important part to play in making a difference to how cancer services are designed, developed and delivered.
They are the people who use or experience the service, treatment or care, and know what works and what doesn’t.
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- To develop a supportive Forum for cancer patients and carer groups across the area to:
- Share experience, successful approaches and good practice
- To provide mutual support – especially to new groups
- Provide a voice for cancer patients in our region:
- Identify services that are working well
- Identify gaps in provision or areas of shared concern
- Work to engage harder to reach communities so their voice may be heard
- Provide an opportunity for people affected by cancer to influence cancer service commissioners and providers:
- To enable cancer patient support groups to act together in agreeing their own patient-centred and patient-led priorities
- To enable collaboration in research projects
- To enable Forum members to shape future Forum work streams
- To enable communities to bid for small pots of seed funding to meet local priorities
- By partnership working – by providing a way through which cancer service providers, cancer alliances, commissioning bodies and research agencies can make direct contact with cancer patients who wish to become more involved.
Yorkshire used to have a well-developed Cancer Network which allowed people affected by cancer and healthcare professionals to work together and decide how best to develop and deliver services. Patients played an active role and contributed to peer reviews as well as carrying out patient-led research.
However, in 2013, the Cancer Network was changed by the Government into the Strategic Clinical Network.
This new network didn’t just focus on cancer but looked at a whole range of long-term conditions such as mental health, cardiovascular disease and maternity services.
Investment in the cancer infrastructures gradually declined until, by the end of 2014, there were only a few individuals remaining as active participants in cancer service design and delivery.
The voice and influence of people affected by cancer on a Yorkshire-wide footprint began to decrease, with hospital Trust based participation groups following shortly behind. Newly-formed Clinical Commissioning Group (CCG) patient panels were not cancer specific, where they existed at all.
In 2014, Macmillan Cancer Support began to support the newly formed Yorkshire Cancer Patient Forum. The Forum was initially made up of members from the old Cancer Network, who believed that people affected by cancer should have their say on services.
The new Forum carried out a survey of local self-help and support groups, of individuals affected by cancer, and of people involved in delivering services and found overwhelming support for the development of the Forum.
The Forum grew from strength to strength and in March 2015 received a small amount of funding from Macmillan User Involvement Grant Stream to develop a website and to host events to bring like-minded people together.
By early 2017 HealthWatch Wakefield had successfully applied to Macmillan Cancer Support to fund a worker to support the Yorkshire Cancer Patient Forum.
Macmillan, HealthWatch Wakefield and the Forum are working in partnership to rebuild user involvement from grass roots levels and to ensure the voice of people is once again at the heart of cancer service design and improvement – a sentiment echoed by the NHS Five Year Forward View
The Yorkshire Cancer Patient Forum (YCPF) is an independent organisation representing a voice for people affected by cancer in Yorkshire and the Humber.
We aim to build a robust and effective network of people affected by cancer, carers and cancer groups across Yorkshire and Humber providing a mechanism by which patient experience can be put at the heart of decision making in cancer services.
- Provide a forum and a ‘voice’ for people affected by cancer, their carers and families, and all those who share an interest in improving cancer services in Yorkshire and Humber.
- People affected by cancer will feel supported and have the necessary information and advice when they need it and can be signposted to an appropriate support group
- To provide opportunities for people affected by cancer, to share and compare experiences of using cancer services – both good and not quite so good.
- People affected by cancer will have a tangible and easily accessible route to influence cancer service commissioners and providers
- Commissioners and providers of cancer services will make decisions informed by patient voice and experience
Power and responsibilities
In order to achieve its aims and objectives the group may:
- Raise money through grants or subscription
- Open a bank account/accounts
- Take out insurance
- Employ staff
- Work with similar organisations to exchange experiences, information and advice
- Do anything that is lawful which will help to further its aims aims and objectives
- YCPF is open to all cancer patients, their carers/families, all cancer support groups and all those who share an interest in improving cancer services in our area, who are:
- Interested in helping the Forum to achieve its aims
- Willing to abide by the rules of the Forum
- Willing to pay any subscription agreed upon by the Forum
- The Steering Group reserves the right to terminate the membership of any member who they believe has breached the rules of the Forum. In such circumstances the member in question shall have the right to be heard by the Steering Group, accompanied by a friend, before a final decision is made
Equal Opportunities Statement
The Yorkshire Cancer Patient Forum confirms its commitment to equality of opportunity in all areas of its work. All individuals will be treated in a fair and equal manner and in accordance with the law regardless of gender, marital status, race, religion, colour, age, disability or sexual orientation.
The YCPF Steering Group is a sub-group of the Forum charged with day to day management and delivery of Forum aims, objectives and agreed activities on behalf of the whole YCPF membership.
The YCPF Steering Group is accountable to the whole Forum Membership, acts on their behalf and is required to formally report back to the Forum Membership at the annual AGM re it’s discharge of all agreed responsibilities.
The YCPF Steering Group is responsible for:-
- Communication with and between all Forum Members
- The active engagement and participation of Forum Members in the ongoing development, review and updating of all Forum aims and objectives
- The organisation and delivery of agreed Forum activities (including the annual AGM)
- The management of all Forum funds and monies
- A partnership role and joint responsibility for the Macmillan funded YCPF post and budget via a sub-group of Steering Group Members
- The representation of the Forum in strategic, partnership and network groups and activities
- Reporting back to Forum Membership on progress and developments on an ongoing basis and more formally at an annual Forum AGM
Membership of the YCPF Forum Steering Group will be drawn from the Forum membership as well as agreed representatives of the wider ‘cancer community’ in Yorkshire and Humber, including relevant health organisations and cancer charities.
The group will consist of not less than three and not more than 15 individuals and will include:
- The YCPF Chair
- The YCPF Treasurer
- The YCPF Secretary
- Patient representatives from Yorkshire and Humber
- Any agreed representatives from health organisations/cancer charities
- The Macmillan Engagement & Communications Officer
- The Macmillan project administrator – Who will both provide administrative support to the Steering Group
A quorum of 5 members is needed, including at least one of the lead officers (Chair/Treasurer or Secretary).
Any Forum member may attend any Steering Group, by prior notice to the Secretary and/or Chair. Other individuals may attend when invited for specific agenda items. The Steering Group shall have the power to remove any member of the Steering Group, but only for a ‘good and proper reason’.
Joining the Steering Group
During the course of the year, interested YCPF members may fill vacancies on the Steering Group by submitting a brief expression of interest to the Chair, followed by an informal meeting with the Chair or one of the lead officers. A recommendation will then be submitted to the rest of the Steering Group for their decision.
Leading up to the AGM, interested YCPF members may follow the same procedure as above, but a recommendation will then be submitted to the AGM for approval.
New members will be provided with an induction pack which includes:
- A brief history of the organisation
- A copy of the Terms of Reference
- A list of forthcoming meetings
- Previous Steering Group minutes
- Contact details for Steering Group members
Frequency of meetings
The Steering Group will meet every other month. Venues and meeting times will be set in consultation with Steering Group members.
Minutes will be circulated to all Steering Group members and to members of the Project Management Group (which manages the Macmillan funded YCPF post) An approved version of the minutes will also be available on the YCPF website.
YCPF Steering Group members will be reimbursed for travel expenses and parking costs which are incurred by attending meetings associated with the Forum activities. Expenses forms and receipts should be submitted to the YCPF Engagement & Communications Officer for payment.
Steering Group members are required to respect all confidential matters that they may learn or hear in the course of their role and to respect the requirements under the Data Protection Act. The Chair will undertake to inform members if information being shared is of a confidential nature. Members are also required to respect the confidentiality and privacy of other members, health professionals and the public, they come into contact with, during the course of YCPF activities.
Code of Conduct
- To show respect when communicating as a YCPF member with others, both inside and outside meetings, and to listen to others’ viewpoints and opinions.
- To promote the shared values of YCPF:
- Inclusive and collaborative – we put people first, particularly those who are less able to represent themselves. We work in partnership with all our key stakeholders
- Credible and effective – we aim to be respected for our rigour and high standards of information, intelligence and reporting. We want to make a difference.
- Open and accountable – we hold meetings in public and make our notes accessible on our website
- Independent – we act on behalf of local people affected by cancer, and their carers and families independent of political parties, commissioners and providers. We have no vested interests in the outcome of our work apart from improved cancer services for the people of Yorkshire and the Humber.
- Members will determine their own level of participation within the Forum and the degree to which they wish to represent the Group at other meetings
- No member shall seek to represent or speak on behalf of the YCPF unless they have been asked to represent the Forum as user representative on a specific committee/project group.
- Topics and personal issues discussed within the Forum can be sensitive and should be treated with respect and confidentiality.
- Media inquiries should always be referred to the Chair before responses are given on behalf of the YCPF.
- Members will sign the confidentiality agreement.
- Members will declare any conflicts of interest
- Statements of dissatisfaction in relation to actions of the Steering Group, or individual members, should be taken to the Steering Group Chair or the Macmillan Engagement & Communications Officer.
YCPF Annual General Meeting
The Forum will hold an AGM in June each year. All members will be given at least 14 days notice, and shall be entitled to attend and nominate or vote, where that is necessary. The business of the AGM will include:
- A report on the Forum’s activities over the year
- A report from the Treasurer on the finances
- Ratifying (or electing when necessary) a new Steering Group
- Considering any other matter as may be decided
At least 20 members must be present for the AGM to be considered quorate.
Special General Meeting
A special General Meeting may be called by the Steering Group or by a minimum of 15 Forum members to discuss an urgent matter. The Secretary shall give all members 14 days notice together with notice of the business to be discussed.
Alterations to this Terms of Reference
To be approved by two-thirds of those members present at the AGM.
The Forum may be wound up at any time if agreed by two-thirds of those members present at an AGM or Special General Meeting. In the event of winding up, assets remaining after all debts have been paid shall be given to another Group or Forum with similar aims, as agreed by Forum members.