cheshire and merseyside cancer voices - logo - master - june 2022.jpgPatients, carers and members of the public have invaluable knowledge and experience that can help shape and improve local cancer services.

The Cancer Alliance has a number of ways that you can get involved.

Our Patient Representatives work with us to make improvements, develop new ideas and ensure the patient voice is at the heart of everything we do.

 

Role Descriptions

Would you like to attend a focus group about your cancer area of interest? Are you passionate about providing patient/carer perspective on early diagnosis programmes of work or end of treatment care?

If so, please complete the following expression of interest form - https://forms.office.com/e/P5AG8MmaWa - and a member of the Patient Engagement Team will be in touch.

Click here to listen to listen to one of our wonderful patient representatives, Claire’s audio clip -TBC

For more information, please see the role description document here: Role Description: Patient Advisor

Do you have a story to tell?

At Cheshire and Merseyside Cancer Alliance (CMCA) we love to hear and share stories from those who have been affected by cancer and their loved ones, staff working within cancer services, our stakeholders and community organisations.

Patient Engagement Officer Charlotte says: “By listening to patients, carers, family, friends and staff talk about their experiences, it can help identify barriers and difficulties faced and highlight areas in which services can be improved.”

CMCA believes that improving experience of care is crucial to improving both quality and reducing health inequalities. One way of doing this is by listening to those who have a lived experience of cancer.

We want to hear about the positive and negative experiences you may have encountered. Your story would then be shared during CMCA meetings, at board meetings within other trusts and organisations, at training sessions or at education events and on social media (with your permission to do so) to help shape, develop and improve cancer services across Cheshire and Merseyside.

There is a whole range of ways for you to tell your story including recording your story in person using video or in written form, whether that be in a diary format or in paragraphs along with pictures and audio clips. The choice is yours.

If you would like to share your story, please fill in the following form https://forms.office.com/e/i77LVQZMG2 and a member of the Patient Engagement team will be in touch to discuss how we can help you tell it.

For more information, please see the role description document here: Role Description: Patient Storyteller

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Kevin, pictured,spoke about sharing his story at a Cancer Experience Event.

He said: It was a privilege to put my experience to use which may help improve cancer care.

"Thank you, Jenny, Charlotte and the rest of the team for all you do to help people.”

Are you interested in reviewing documents to ensure they are suitable for members of the public? Have you received a hospital document in the past and thought parts of it could have been worded better or more appropriate images could have been used?

If so, then this role is for you. Our patient engagement team receive around 2-3 documents per month from project managers asking for them to be reviewed by readers panel members. You are the expects in what our current population want and we need to listen to you when it comes to design, layout, wording, images and how easy documents are to understand.

For more information, please see the role description document here: Role Description: Reader’s panel

If you are interested in becoming a CMCA readers panel member, please complete the following expression of interest form - https://forms.office.com/e/P5AG8MmaWa and a member of the Patient Engagement Team will be in touch.

 

These are examples of documents our readers panel have reviewed...

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This is the kind of feedback our reader panel members provide...

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Patient review comments 2.png

 

Do you have an interest or lived experience in a certain cancer type and find clinical meetings interesting? Have you got the knowledge and experience to be able to provide patient perspective in a clinical quality group (CQG) meeting?

If so, please complete the following expression of interest form - https://forms.office.com/e/P5AG8MmaWa - and a member of the Patient Engagement Team will be in touch.

For more information, please see the role description document here: Role Description: Clinical Quality Group (CQG) User Representative

Are you interested in providing patient perspective and being that critical friend in our Cancer Alliance Board meeting? Do you see the importance of patient voice and addressing health inequalities?

If so, please complete the following expression of interest form - https://forms.office.com/e/P5AG8MmaWa - and a member of the Patient Engagement Team will be in touch.

For more information, please see the role description document here: Role Description: Cancer Alliance Programme Board User Representative

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Fiona

Fiona’s reason for becoming a CMCA Patient Representative: "I became a
patient rep because as a full-time wheelchair user, I am passionate about the need to make all diagnostic tests, such as mammograms, more accessible for people with a disability and my involvement with CMCA and the other patient reps is helping me to pursue this aim."

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Rita




 

Rita’s reason for becoming a CMCA Patient Representative: "I was an NHS nurse for 36 years before I became a patient with cancer. I understand the immense pressures that staff are under.

"It has been such a privilege to become a Patient Representative in the Cheshire and Merseyside Cancer Alliance and to now be able to use my professional and personal experience of cancer care to make sure that the needs and voice of the patient are heard."

Interested?

If you are interested in being involved as a CMCA patient/carer representative, please complete the following form: CMCA patient/carer representative expression of interest form.

If you are interested in sharing your cancer story, please complete the following form: Storyteller expression of interest form.

Once you have completed the form, a member of the CMCA Patient Engagement Team will be in touch to provide you with information and to start the on-boarding process.

As a patient/carer representative, you will receive a handbook welcoming you to the team. Click here for a sneak peek of what we expect from you and what you can expect from us.

One of our Cancer Alliance Patient Engagement Officers for Cheshire and Merseyside said: “It is extremely important to have patients, carers and community organisations involved in our projects to help improve cancer care and raise awareness of early detection. Patient perspective plays a huge role in cancer services, and we want as many patients as possible to have their voices heard.”


Am I ready to get involved?

There is no right or wrong time to get involved and become a CMCA Patient Representative. We only ask that you do not have any ongoing disputes or complaints regarding your or your loved one’s care. Some people wish to become a Patient Representative a few months after diagnosis and/or treatment, whereas some people will get involved years down the line.
Becoming a Patient Representative means that you may interact with health care professionals and be involved in projects and communications around cancer services. Some involvement opportunities may remind you of difficult experiences or bring to light uncomfortable feelings. It is important that speak to the Patient Engagement team if this occurs so we can support you.
If you’re still not sure, a member of the team would be more than happy to talk with you and work out if now is the right time for you.

How much am I expected to be involved in? Is there a minimum time commitment every month?

We understand that everyone’s lives are different and the time that you have to offer may vary, and this not a problem. Our Patient Representatives can choose how much they would like to be involved. No matter the level of your involvement, your role as a Patient Representative in working groups, projects and engagement activities will have equal weighing to everyone else involved. Your contribution will influence just as much as anyone else involved.

Can I be involved in more than one role?

CMCA has a number of ways that you can get involved and it’s up to you how many roles you undertake. Roles include Readers Panel / Easy Readers Panel Member, Storyteller, Patient and Carer Advisor, Programme Board User Representative and Clinical Quality Group (CQG) User Representative.

How much experience do I need? 

To be a member of CMCA’s Patient Representative team, all we ask is that you have had an experience of cancer services. You may be or have been affected by cancer yourself or are someone who has cared for a person affected by cancer.
Those who have been affected by cancer have invaluable knowledge and experience that can help shape and improve local services and that’s why we need you! Our Patient Representatives work with us to promote quality and equality, improve health outcomes, and draw upon personal experience to ensure the patient voice is at the centre of everything we do.

Do I need to be able to use technology?

At CMCA we work both virtually and in person due to the number of professionals we work with and the geographical area we cover. We use Microsoft (MS) Teams for most of our virtual meetings and we will provide you with as much support as needed to feel comfortable using this platform.
When you become a Patient Representative, we ask you how you would like us to send information and get in touch with you. This can be over the phone or via email or post. Whatever your level of technical ability, we will work with you to make sure that you are comfortable getting involved, in a way that is accessible for you.

How do you keep me updated with involvement?

We’ll always keep you updated with anything which affects your role and will ensure you are kept up to date about the result of your involvement in an activity.
We hold 6 weekly drop-in sessions via Microsoft teams to provide an update on Patient Engagement and to give you the opportunity to discuss anything regarding your role or current involvement along with listening to your suggestions and comments. We also aim to hold face to face meetings periodically throughout the year.
There is a monthly newsletter which will be shared with you. The newsletter will highlight and celebrate the activities which our wonderful Patient Representatives have been involved in.
You don’t have to wait to hear from us, you can always reach us via email or telephone.

Will I be paid?

All our Patient representatives are involved on an un-paid voluntary basis. However, it is extremely important to us that any work which you are involved in does not leave you out of pocket. We have expenses policy which will be shared with you.

Expenses

We’ll help you claim expenses. Patient Representatives may incur costs whilst being involved in the work of CMCA such as travel, office supplies and refreshments. We encourage Patient Representatives to use our expenses policy to claim back such costs. The expenses policy can be found here (insert link to policy).
How can I give feedback about a hospital I attend, and/or treatment I received?
If you have feedback in relation to an individual treatment concern, or a specific hospital trust, you can provide this via the Patient Advice and Liaison Service (PALS). Each hospital has their own PALS officer, and you can find your local one through this search. They will be able to best advise and direct your feedback and/or concerns via the appropriate avenue.

How do I contact the team

You can contact the Patient Engagement officers via email on: ccf-tr.cmcapatientengagement@nhs.net or telephone 07823 417 472 / 07786 975 694

Newsletters

Read our Patient Engagement newsletters here:

May 2024 patient newsletter

 


Should you have any questions regarding patient involvement, please email our Patient Engagement Team on  ccf-tr.cmcapatientengagement@nhs.net.