James & Adrian
Adrian shares his experience of James’s childhood cancer
James was diagnosed with advanced liver cancer at the age of seventeen in May 2024. James was treated at both The Christie Hospital and MRI.
His father, Adrian, has written an honest and revealing memoir about every stage of James’s cancer journey. The book is called James Making Meaning in the Face of Cancer. All profits from the book are towards Young Lives vs Cancer, as this charity did a great deal to help James.
James lived his life to the full; he enjoyed walks in the countryside with his family and developed a great passion for music. There were also moments of real humour – which were shared both with his family and his care team.
Adrian’s family would like to pay tribute to The Christie and the team at Manchester Royal infirmary, who supported James with great kindness. James quickly lost a great deal of power and muscle mass, but The Christie’s physiotherapist Tom Reading managed to slowly re-build James’ strength and mobility.
James subsequently walked every evening in a local beauty spot, hidden behind a main road near the heart of Levenshulme.
Adrian hopes parents whose children have been given a cancer diagnosis will be able to relate to the small triumphs and moments of shared hope that James experienced.
Adrian’s family hopes that James’s legacy will be that – even in the most difficult of times, it’s possible to find meaning through family, nature and shared connections.
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