Rory
Rory, Stacey and Terry share their expereince of Care Closer to Home
To all the team involved,
As a family, we cannot thank the mobile children’s cancer unit enough for the extraordinary difference it has made to all our lives during Rory’s treatment.
When your child is diagnosed with cancer, every hospital journey feels heavy. What might seem like a simple appointment often means an 80-mile round trip, hours of travelling, parking, waiting, and a whole day revolving around a treatment that can take just 10 minutes. The mobile unit has lifted so much of that burden.
Instead of spending precious time on the road, we have been able to focus on what matters most – being together as a family and helping Rory simply be a little boy. The convenience is incredible, but the emotional impact has been even greater.
After a difficult start to his treatment, Rory understandably lost some trust in the process. The care, patience and kindness shown by the team on the mobile unit have helped rebuild that trust, one appointment at a time. Being treated in a calm, quiet environment, where he is the only patient at that moment, has eased so much of his anxiety. He feels seen, listened to and genuinely cared for.
We would especially like to thank Caroline, Nicole and Eddie. Their warmth, compassion and dedication have meant more to our family than we could ever express. They don’t just administer treatment – they create a place where Rory feels safe. They have met him with smiles, reassurance and endless patience, and they have helped turn some of our hardest days into ones we leave feeling lighter. Their kindness will stay with us long after treatment has finished.
We would also like to take this opportunity to express our gratitude to Professor Brennan for ensuring that Rory has had the opportunity to receive his care via the chemo bus. The whole concept has had a positive impact on Rory’s wellbeing (and ours) that is difficult to articulate into words.
One moment that truly showed us how invaluable this service is came during our family holiday in the Lake District. Thanks to the mobile unit, Rory was able to receive his treatment locally, meaning we didn’t have to interrupt our holiday with a long journey back to Manchester. At a time when life can feel dominated by hospital appointments, that gift of normality was priceless. We were able to continue making precious memories together instead of spending the day on the motorway and the oncology unit.
The mobile unit doesn’t just deliver chemotherapy. It gives families back time. It reduces anxiety. It removes barriers to treatment. It preserves moments of normal family life that childhood cancer can so easily take away.
To everyone who has made this service possible, thank you. Your vision, commitment and compassion are changing the experience of cancer treatment for children and their families in ways that cannot be measured. We will always be grateful for the care you have shown Rory and for the hope, comfort and dignity you have given our family at a time when we needed it most.
With warmest thanks to the whole team involved,
Rory, Stacey and Terry
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

