People Affected by Cancer Advisory Board

Our People Affected by Cancer Advisory Board (PABCAB) ensures that those with lived experience of cancer are at the heart of anything we do as a Cancer Alliance.

The People Affected by Cancer Advisory Board (PABCAB) is a panel of people who have been affected by cancer in South Yorkshire, Bassetlaw or North Derbyshire either as a patient or as someone who has cared for, or supported, someone with cancer. It is designed to ensure that the needs of patients and carers are given priority, and to challenge the thinking of those making decisions where necessary.

PABCAB meet every two months along with programme leads from the Cancer Alliance, partners from Trusts and partner organisations or charities, for approximately three hours (either online or in-person). The meetings are a great opportunity to share feedback and updates and to discover opportunities for further involvement. Each meeting typically covers a maximum of two projects with some additional small discussions.

In between meetings, additional information and projects to get involved in may be sent via email to panel members, for example surveys or invitations to subject-specific project groups.

We also have the option to join our People Affected by Cancer Membership List which does not involve a requirement to attend meetings and allows you to be involved with less commitment. More information about the Membership List can be found here.

The work of the Advisory Board is then fed back to senior leaders and key decision-making forums of the Cancer Alliance.

What our current Advisory Board members say

Penny Brooks, Advisory Board member, said: “I joined the Advisory Board after my own journey with cancer, and as a carer of a friend who died of cancer, as I wanted to use my experiences to help make a difference to services and more, importantly improve the experiences of the patients and their families and carers. Attending and contributing to the Advisory Board helps to give me a voice in making changes for other patients and their families.”

Kathryn Gilbert, Advisory Board member, said: “I decided to get involved after reflecting on my experiences going through diagnosis.  I felt that there were points during the period leading up to diagnosis where I had not felt heard. Being a patient voice means that I have the opportunity to share those experiences with people who can, and sometimes do, change things.  The patient voice can be very powerful. Some of my feedback has surprised people because it was something only a person with lived experience knows and they just hadn’t thought of it.

“I’ve met some fabulous people through being a patient representative, people who otherwise I would not have had the opportunity to meet.  Listening to other people talk about their experiences makes you realise that you are not alone and that we all want the same thing.”

South Yorkshire and Bassetlaw Cancer Alliance – Who are we?

We are collaborators working to develop and implement a different model of cancer care for South Yorkshire and Bassetlaw.

We bring together a range of organisations to help ensure the best possible cancer care in South Yorkshire and Bassetlaw. These include NHS organisations, local councils, charities, and patient groups.

Our vision is to work together to develop services based around the whole person, not just their cancer, for every stage of support they may need to: be healthy, be in treatment, recover, stay healthy, be pain free or to die with dignity.

Read more here

Previous projects with PABCAB involvement

 Over the past 12 months, our Advisory Board have used their experience and feedback to help shape the development of a number of key projects:

Non-surgical oncology (NSO):

The Cancer Alliance are currently reviewing where patients are seen by a consultant for non-surgical outpatient appointments across South Yorkshire, Bassetlaw and North Derbyshire. Due to a national shortage of consultants, temporary changes were made meaning some patients may have to travel for their appointment. We are now in the process of making more permanent changes to where these appointments are delivered and input from the public and patients is needed.

Advisory Board members have been involved in the work to shape non-surgical oncology (NSO) outpatient services in many ways. As well as dedicated sessions to discuss members’ experiences in relation to NSO services, some members also took part in one-to-one interviews to describe how travel, location, communication, and waiting times affect their experience of attending appointments, and what the service should look like for all these areas.

Feedback from the group has been inputted into the analysis of the service and presented at engagement events with stakeholders, fed into the report of the public listening exercise on these services and included in documentation taken to the Joint Overview Health and Scrutiny Committee – a meeting of councillors from local authorities from across the region who scrutinise health services changes.

After a discussion at an Advisory Board meeting, a member of the Advisory Board also opted in to attend specific breast non-surgical oncology supportive care task and finish groups to use their experiences to help clinical and personalised care and support teams make decisions which put patients, carers, and their families at the centre.

Psycho-social support:

The importance of psychosocial support for people affected by cancer is widely recognised, and the cancer quality of life survey has shown significantly higher rates of both mild and moderate mental health problems for those who have experienced a cancer diagnosis.

In order to understand the gaps in psychosocial support from the perspective of people affected by cancer, the Advisory Board shared their feedback and comments on the areas identified for improvement and proposed levels of support for cancer patients, to identify what should be offered to patients at different stages of the cancer pathway, and for different stages of a cancer diagnosis. Feedback from the sessions was incorporated into the communications pack which informed the discussion with stakeholders to agree our priority areas of focus for the project, and to develop a Gold Standard pathway for psychosocial support from diagnosis to living with and beyond cancer.

Personalised care transformation lead job description:

Advisory Board members provided suggestions to the draft job description for a new role which will support and improve the Cancer Alliance’s personalised care and support workstream. Members’ input into the job description, responsibilities and skills required were all incorporated into the final edit and helped us to make sure it really reflected an inclusive role that will work across the South Yorkshire and Bassetlaw system.

 

 

Join the People Affected by Cancer Advisory Board

* PLEASE NOTE: Recruitment for our People Affected by Cancer Advisory Board has now ended *

To find out more about other ways to get involved, including our membership list please click here.

Who can apply?

You must meet the following criteria to apply for a role on the advisory board:

  • Live within reasonable travelling distance to attend face to face meetings in South Yorkshire and Bassetlaw

AND

  • Have been diagnosed with, or treated for, cancer by an NHS service in South Yorkshire, Bassetlaw or North Derbyshire within the past 5 years – this can be a primary or secondary diagnosis of cancer, or ongoing treatment

OR

  • Have cared for or supported someone diagnosed with, or treated for, cancer by an NHS service in South Yorkshire, Bassetlaw or North Derbyshire in the past 5 years

What does a role on the People Affected by Cancer Advisory Board involve?

As a member of the People Affected by Cancer Advisory Board, the core of your role will be using your knowledge and experience to give advice about the impact on patients and carers of work being developed and undertaken by the South Yorkshire and Bassetlaw Cancer Alliance.

The People Affected by Cancer Advisory Board acts to ensure that the needs of patients and carers are given priority, and to challenge the thinking of those making decisions where necessary.

You will be invited to attend 5 or 6 meetings per year, which are usually 2 hours long. We have been running these meetings online, but are moving towards incorporating face-to-face meetings more often in the future. The balance of online vs face to face meetings are something we will discuss with our advisory board members so that it is a good fit for the group. The location of in-person meetings will also be discussed with members to decide where is best from what is available out of our offices across South Yorkshire and Bassetlaw.

We may also send you documents to review via email, and surveys for to complete or share within your networks e.g. through your peer support groups or with family and friends. You may also be invited to take part in additional topic-specific meetings or events, or to talk about your experiences to assist with communications activities or campaigns.

Information will be sent out ahead of each meeting including an agenda, minutes of the last meeting, and supporting documents or presentations for the discussion. You will need to read and understand them ahead of the meeting so that you will be able to contribute to discussion.

This is a voluntary role, so you can opt out at any time, and although it is recommended that you come to as many meetings as you can, if a meeting date isn’t convenient, there is no strict obligation for you to attend.

What you can expect from us:

  • Reimbursement of out of pocket travel expenses
  • Basic training for the role, including detailed information about the Cancer Alliance
  • Regular communication and support from a member of the Communications and Engagement team
  • Clarity with regard to your activities and expectations
  • Respect, honesty and integrity

What skills are needed to join PABCAB?

Everyone has something to offer, and you don’t need to have in depth knowledge of the NHS or direct experience in a similar role to join our People Affected by Cancer Advisory Board. We welcome people to apply who:

  • Have a genuine interest for improving cancer care and support for people affected by cancer in South Yorkshire and Bassetlaw
  • Are comfortable in a group discussion setting and able to put across your views in a calm, confident and considered manner
  • Are able to work as a team with other panel members, where everyone has an opportunity to speak and everyone’s views are respected even if members disagree
  • Can represent the opinions and experiences of people within their local community
  • Are aware of issues relating to health inequalities and want to make cancer services more equitable and accessible for all

We recognise that in order to shape cancer services that meet the needs of our population we need to hear from a diverse range of people, and this is an area where we need to improve. Therefore, we especially welcome applications from people from seldom-heard and under-served communities.

What can I expect from a PABCAB meeting?

As an official meeting, the panel sessions have a set agenda and minutes are taken. The agenda is set by the Cancer Alliance with input from the co-chair of the panel. The co-chair is a member of the panel. Agenda items will be developed in line with the Cancer Alliance plan and work programmes.

Agendas and paperwork are emailed to panel members at least seven days prior to the meeting, information will be delivered clearly and in a format that is easy to understand. There will be clear aims and objectives for each topic, set by the Cancer Alliance to guide discussions.

Other ways to get involved

People Affected by Cancer Membership List

If you would like to be involved but would prefer a lower-commitment level of involvement, we are also developing a People Affected by Cancer Membership List.

For this there will be no expectation for you to attend regular meetings, but we will send you surveys to hear your opinions and feedback about cancer services and prevention and invite you to topic-specific focus groups relating to short-term work.

Click here for more information.

How to apply

Recruitment for the People Affected by Cancer Advisory Board has now ended.

Find out more about our Membership List here.

Contact and further details

For an informal conversation, please email syicb-sheffield.cancerallianceadvisoryboard@nhs.net and a member of the team will respond as soon as possible.

Please provide a telephone number if you would prefer to be contacted by phone.