Welcome to our dedicated page for the ‘Our Cancer Our Way’ project!

At the end of this page, there is some more info about why we are doing this project if you would like to find out more.

Our Cancer Our Way has been all about hearing what you think.

We are now in phase 3 of this project, please see below for details of how Phases 1 and 2 were completed.

Phase 3

Phase 3 is all about having conversations with clinicians, staff, parents/carers and children, teenagers and young people with cancer. The survey gave us the areas you want us to prioritise so now we need to work on ideas and solutions that can help.

At the end of 2022, the project team had a face to face meeting with clinicians, at The Maggie’s Centre in Southampton where some of the issues that had been prioritised were discussed. The aim is to come up with ways to make improvements that are not just a quick fix, but changes that have been co-designed by staff and patients and that can stay – always.

In March and April 2023, the engagement leads for the project are going to be visiting University Hospitals Southampton, to get more ideas and suggestions for how these improvements could be done. You can follow our progress, by visiting the virtual whiteboards to see what people are saying.

Phase 2

Phase 2 involved working through all the feedback we received.

We received a lot of positive feedback and also heard about things that could be done differently to improve the experience of children and young people with cancer. We collated all the feedback and shared this back with everyone who took part.

We put the comments and suggestions into themes which were:

• Communication/Information
• Support
• Practical issues

What next?
The next task was to decide where to start with the improvements and we asked people to choose their top priorities from each theme. The hospital teams sent a survey out to all those affected which helped us to see what matters most to people.

Our plan is to work through all the feedback, but we need a place to begin. Younger children were also involved by being asked to put stickers onto worksheets which have been specially designed for this project to allow them to also have their say about what matters most to them.

The CTYA and their parents/carers were invited to work with clinicians directly to help design and implement the improvements – see phase 3 for the next steps.

This is true coproduction in action!

If you want to know more, please contact Sue; sue.bickler@helpandcare.org.uk

Phase 1

We wanted to know what was good about your cancer services, what was not so good, and what would you change, if you could. We were delighted to receive so much feedback and input to this first phase of the project and would like to extend our thanks to all the parents, carers, teenagers, young adults and children who have shared their thoughts and ideas.

We invited people to be as creative as they wanted to be, sharing blogs, pieces of artwork, poetry, video diaries, mind maps, songs, posters, photo diaries and stories. You can see the flyers below for details of how we promoted this to each group we wanted to hear from.

We held some online meetings where we spoke to people about their experiences. We did offer to hold some focus groups, but many of you chose to speak to us on a one-to-one basis, which was really insightful.

Due to the ongoing Covid-19 pandemic, many of the people we wanted to engage with, were self-isolating, but we managed to speak to them either online, over the phone or they emailed us their feedback, so we have been able to involve as many people as possible.

If you want to find out more about this project or joining the project group:

Please contact Sue on: 0797 175 5079 or email sue.bickler@helpandcare.org.uk

Images below: these are the flyers we used as part of phase 1, asking for people to send their feedback.

Watch our video from phase 1 here. An updated video for 2023, will be coming soon.

What is Our Cancer Our Way?

Cancer services for children, teenagers and young adults – co-production of improvements.

Wessex Cancer Alliance has secured funding from the NHS England Experience of Care Team to support the development of system wide coproduction of improvements in networked cancer services for children, teenagers and young adults (CTYA).

Who will do this work?

This work is being led by Louise Hooker, Clinical Advisor for the Wessex Cancer Alliance on CTYA cancer services. Phase 1, we worked with Healthwatch Dorset and for phases 2 and 3, we continue to work with our engagement partners, Involving People, drawing on their coproduction skills and experience working with children, teenagers and young adults, supporting and encouraging them to express their thoughts, feelings, hopes and fears. Throughout the project we will work alongside the clinical cancer teams across Wessex, via the CTYA’s Cancer Network coordinating groups.

What will this work involve?

We will plan and deliver a programme of varied and creative engagement to explore the patient and family perspective of the whole cancer journey, including engagement with primary care, education and training, their workplace, social care, and benefits – all of which have an enormous bearing on their experience and broader outcomes. We will not just be using the usual surveys and focus groups. Methods will be imaginative, age-appropriate and engaging so we will use blogs, vlogs and a range of arts engagement tools that are achievable alongside active treatment and given Covid restrictions, available on remote platforms alongside paper based, in person activities. We are though mindful not to exclude those without access to digital technology.

What long term difference will it make?

This work will enable us to identify opportunities for service improvement. Strategic and operational plans must be informed by the experiences and priorities of young service users and their families. We want to co-design a system that better meets the particular and broad needs of children, teenagers and young adults and their families. We will ensure methods for listening to needs, and then implementing change through co-design is part of our culture and ongoing service delivery.

How can I get involved?

If you want more information or want to support this work in any way, please contact:

• Sue Bickler, Project Manager, Involving People: Sue.bickler@helpandcare.org.uk