Patient Stories
Patient stories can be triggering, please engage with these stories at your own pace.
Emmie & Eve
Emmie and Eve share their experience of Emmie’s cancer and the set up of Emmie’s Kitchen
Rory
Rory’s Mum and Dad, Stacey and Terry, explain the impact of having care closer to home
Milly
Lorraine tells the story of her late daughter Milly and how the charity Milly’s Smilies began
Sorrelle & Sam
Sorrelle’s Grandad Sam shares their families story of Sorrelle’s childhood cancer
Henry & Sam
Sam tells the story of her late son Henry and why access to good WiFi is so important
James
Adrian tells the story of his late son James, of finding hope and meaning in family, and shared experiences.
How can you get involved?
We are always wanting to hear from you, so if you are interested in getting involved, or speaking to us about your experience please do contact us via info.nwccodn@mft.nhs.uk
By sharing your experience, suggestions, and thoughts, you can help to influence and shape the service. It will also benefit many other children, young people, and families in the future across the region.
Strategy Development
During the development of the network and shaping of the strategic priorities and workplan; the Programme Manager, Davina Hartley, and Charlotte Lloyd, Quality Improvement Lead Nurse, wanted to involve patients and families. They went on site to the PTCs (Alder Hey Children’s Hospital NHS FT and Royal Manchester Children’s Hospital) in April 2023 to capture information regarding experience and suggestions for improvement to Children’s Cancer Services. (active link to find out about the work collected) *Add to the link the posters
Under 16 Cancer Patient Experience Survey
The U16CPES is a national survey sent out annually to children under the age of 16 and their parents/carers. It is for those who have received treatment and care within England hospitals. The survey is led by Picker. To find out more about the survey please press the link to the website:
About the survey | U16 Cancer Survey
Following release of the anonymous results; the Quality Improvement Lead Nurse within the network, works with the Providers to analyse the feedback and consider what areas can be further reviewed and improved following patient and family feedback.
- Yearly analysis and summary of U16CPES
- You Said, We Listened approach
- Pilot of POSCU specific feedback form
- Patient and family events with support services and local charity
- Set up a Patient & Family Experience
- Workstream
- Partnership working with support services
- Focus groups with regional NHSe
- Linking in with PTC provider teams (Quality or Youth Forum groups)
- Consideration of patient representative
- Link with wider ODNs re engagement opportunities