Views of children with cancer shape future services

The experiences of children as young as seven years-old who are living with or beyond cancer have been shared with senior health officials to help inform future cancer services.

Views of 90 children aged 7 to 13 were gathered by CLIC Sargent, the UK’s leading children’s cancer charity for a study commissioned by the National Cancer Survivorship Initiative (NCSI) to assess the impact that cancer and treatment has on every aspect of a child’s life, including education, friendships and family life.

The children who took part in the study said that visible side effects such as hair loss and weight gain made them feel different to their peers, and fatigue often prevented them from taking part in physical and social activities. Long absences from school made them anxious about falling behind and fitting in when they returned.

To help improve their lives, children said they wanted more advice on how to maintain a healthy lifestyle during and after treatment, the ability to attend school regularly, and advice on how to communicate with their friends. Many of them also wanted to use their experience positively, to champion greater awareness of childhood cancer.

Their views are published today in a new report, The Impact of Cancer on a Child’s World and have also been shared with Professor Sir Mike Richards, National Cancer Director for the Department of Health, as part of the Government’s review of the Cancer Reform Strategy. The consultation has also been submitted to the LIVESTRONG Global Commitments campaign ahead of LIVESTRONG Day on 2 October.

Eleven-year-old Lucas, from Derby, told the charity he ‘just wanted to help those who are in the same situation as me’ and Joe, 11, told the charity he wants ‘to get back to normal – if I can remember what life was like before I had leukaemia.’

CLIC Sargent believes that each child or young person with cancer would benefit from a key worker who could coordinate their clinical, emotional and practical care, so they could spend more time closer to home and experience less disruption to their education, friendships and family life.

Lorraine Clifton, Chief Executive at CLIC Sargent said: “Cancer and its treatment have a huge impact on every aspect of a child’s world, so it’s important that children with cancer get the emotional and practical help they need, as well as clinical care, so they can keep up with everyday life and feel ‘normal’ again.

“Younger children don’t usually get the chance to share their views with policymakers, so we’re delighted that some of the children we support have had the opportunity to express their needs, and that their experiences can help inform the current review of cancer strategy,” she added.

The NCSI was established in 2007 under the Cancer Reform Strategy to address the needs of the 1.6 million people living with or beyond cancer in England.

For more information, visit: clicsargent.org.uk