System Failing Children with Cancer

Children and young people with cancer are spending more time in hospital than they need to due to a lack of children’s community nurses and social workers, says CLIC Sargent. 

Nearly half of the families who have spoken to CLIC Sargent feel that they do not get the support they need at home. Parents are feeling isolated, frightened and unable to cope when their child returns home. As a result they are saying their child is remaining longer in hospital than is necessary or ending up back in hospital for minor treatment unnecessarily.

To mark the start of Childhood Cancer Awareness Month (December), the Charity is calling for improvements in community based care and support, so that all children and young people with cancer can have safe and quality treatment at home, or as near to home as possible.

Due to their illness, children and young people with cancer spend many weeks, months and, in some cases, years away from home and school.  This means they are spending time away from their friends and family and missing out on the normal growing up time that most children and teenagers are experiencing.

Almost all children and young people with cancer (97%) want to be able to go home during treatment in order that they can live a normal life, continue with their education and spend time with their friends and family. 

According to one young cancer survivor, Manvir Randhawa, age 19: “Being sick is the easy bit. It is the other things - school, confidence, getting back to having friends, your emotions - that are really difficult. And yet children and young people are being left to cope with all of this on their own.”

Dr Carole Easton, Chief Executive of CLIC Sargent says: “Each day spent in hospital is an extra day a child is losing out on his or her childhood. Being cared for safely at home so that they can be with family and friends or go back to school not only helps children and young people with cancer lead as normal a life as possible, but also helps them cope better with the challenges of cancer treatment."

CLIC Sargent wants to see an end to the postcode lottery in vital services. As part of a wide review of community based services across the UK, the Charity is calling for a more consistent and coordinated approach to community based care and support for children and young people with cancer to ensure a smooth transition from hospital to home and independence.

Dr Carole Easton says: “We would like to see a system which responds to a child's complete needs - not just clinical but also emotional and educational. Every child and young person with cancer should have access to a fully integrated community care team of professionals, co-ordinated by a key worker (a trained children's cancer nurse) that would include a social worker, a GP, a children's community nurse and a teacher.”

Key findings from CLIC Sargent’s survey of families:

• Families are not getting all the support they need to maintain an ordinary life – both at home and in hospital
• When a child returns home during treatment there is a lack of emotional and psychological support in the form of counselling for the whole family (including parents and siblings) and educational support for the child.
• More than two out of three parents who feel they need some level of counselling are saying they cannot it access for them or their child.
• For children and young people with cancer keeping up with education is important. 50% say they need help, but worryingly two out of three aren’t getting the support they need, including access to home tutoring.

There are current regional inequities in community services for children with cancer:

• A majority of parents identified the need for clinical support when at home, in and out of working hours.  This includes visits from a community nurse, tests and treatments at home, and explanations about side effects of treatment.
• Nearly 50% of these families feel that key elements of clinical support at home are lacking.
• Parents in the South West of England are experiencing a good level of support thanks to CLIC Sargent providing the service.  
• One in three families who say they need nursing support in the South East of England (30%) and in the North of England (33%) are not getting it
• The charity is concerned that not all children and young people with cancer across the UK are experiencing the same level of care and support needed to help them return home safely during treatment.   
• CLIC Sargent wants to see an end to the current gaps in community services for children with cancer.

ENDS

For further information and interview requests please call Zoe Grumbridge in the CLIC Sargent Press Office on: 020 8752 2833 / 2812 or email: zoe.grumbridge@clicsargent.org.uk. 

• Dr Carole Easton, Chief Executive of CLIC Sargent will be available for interview
• Case studies of young people and families affected by childhood cancer are available for interview

Editors Notes:

In March-April 2008 CLIC Sargent surveyed a total of 460 service users from across the UK, including 115 young people, 286 parents/carers and 61 siblings.