University Hospital Southampton NHS Foundation Trust

Listening to you

When a family is told their child has cancer their lives change forever and they are thrown into a whirlwind of diagnostics, treatments and uncertainty.

Our clinicians and staff can provide the best possible care, but they are not living through it. That is why we have developed the Kids Chemo project which seeks to learn and better understand the experience of being a patient in our care.

The Kids Chemo project has been generously funded by Health Education England (Wessex) and the Southampton Children’s Hospital Piam Brown fund enabling us to work closely with our patients and their families to find out in depth about their experience of our care.

Improving your care 

We have been using methodology called experience-based co-design which has been developed by the Point of Care Foundation which means we are working collaboratively with our patients in order to improve the system with particular attention to impact on the parts of the process that really matter to families.

Consultant paediatric oncologist Dr Amy Mitchell said: " We have been honoured to hear the stories of 12 of our families and are proud to hear the positive experiences so many of them have had in our service.

"There are however some really interesting areas which they feel could be improved and we are really looking forward to taking these forward in a co-design process."

The project has heard from both patients and their families about their experiences on Piam Brown ward and where they think things might be improved.

Patients who took part included Gracie who has been undergoing treatment at Piam Brown.

She told us how she appreciated doctors involving her in conversations about her care, rather than taking her mum and dad out of the room when they were discussing treatment. Her parents explained how their world had been completely changed following Gracie's diagnosis, describing it as "life changing".

Dr Mitchell added: "However much compassion and empathy we have as a team, we can’t possibly know what it really feels like to come through our service and we strongly believe that working with our patients and their families is the only way to embed their voice in the design of our service.“

 Find out how you can get involved as a child or young person in improving services and facilities at the Trust by visiting our youth service pages here.