Monday, 26 February 2024
Monday, 26 February 2024

Charity reveals young people report varied experiences of their cancer and tumour care

PICKER, a leading health and social care research charity has revealed the need for improved care coordination for young cancer patients in England.

A national NHS survey conducted by Picker found that although parents or carers and children report positive experiences of their overall cancer or tumour care, there is scope to develop some areas including care coordination and communications.

It was the third survey conducted by the NHS that collates feedback from children and young people about their experiences of cancer and tumour care. The results of the survey will be used to help commissioners, healthcare providers, charities and national policymakers identify priority areas for improvement in children’s cancer care services.

The Under 16 Cancer Patient Experience Survey (U16 CPES), developed by Picker on behalf of NHS England, was sent to parents and carers of children and young people aged under 16 who received care at one of England’s 13 NHS Principal Treatment Centres (PTCs) during 2022.

Parents or carers were asked to give feedback about their child’s care, and children over eight were invited to give their own views as well, 885 responses were collected, representing a 25% response rate overall.

Parents/carers and children gave positive ratings of their overall cancer care. Three out of four children said they were looked after very well by healthcare staff. While 89% of parents or carers rated the overall experience of their child’s care as 8 or more out of 10. Furthermore, 91% of parents or carers said they and their child were always treated with respect and dignity, and 83% always had confidence and trust in staff caring for their child.

Clear communication with patients and their families is central to a positive patient experience and aligns with one of the eight Picker principles of Person Centred Care. Communication is particularly important when dealing with children and families facing such a diagnosis.

Almost three-quarters of children (71%) felt that staff always talked to them, not just their parent or carer, and 69% of children reported that they could always understand what staff were saying. 87% of parents or carers reported that they had the chance to ask staff questions about their child’s care and treatment.

In relation to care coordination, 62% of parents or carers felt that different hospital staff always worked well together, and 57% of children reported always or mostly seeing the same members of staff for their treatment and care.

Dr Amy Tallett, Head of Research at Picker, said: 

“We are pleased to have worked with NHS England on the survey and are thrilled to see the results published to broaden our understanding of children and young people’s experiences of cancer care. The feedback should be used to support the delivery of high-quality person-centred care, and we really value the time that children and their parents or carers have taken to respond to the survey.

“Although overall care is generally rated well, there is room for improvement in some aspects of care including communication and care coordination. For the first time this year, Principal Treatment Centres can compare their findings to last year’s survey to understand how children’s cancer care experiences have changed over time. This will help them monitor the impact of any improvement initiatives since last year. It is vital that providers use the results and work with children, parents, and carers to improve cancer care provision as well as to identify where they are performing well.

Picker will soon be running workshops to facilitate understanding of the data and to provide an opportunity for health professionals to share learnings and inspiration for service improvements.”

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