Many children feel left out and left behind when they go back to primary school after treatment for cancer, according to a new report by CLIC Sargent.
Shockingly, more than one in three parents surveyed said their child had been bullied or teased because of the effects of treatment, such as losing their hair or gaining weight from steroid treatment.
More than a third (36%) of parents thought their child did not receive the extra help they needed to keep up with school during their treatment, the research found.
The report by the UK’s leading cancer charity for children and young people into the impact of cancer on children’s primary school education is published today (December 4) during Childhood Cancer Awareness Month. It identifies a range of challenges in helping children keep up with their education when off school, as well as re-integrating when they return, according to parents, children, hospital schools and CLIC Sargent’s nurses and social workers.
A third of parents surveyed said they were dissatisfied with the support their child received on returning to school in getting back into school life and catching up with their work. Some parents who took part in the survey also reported feeling that their child was let down in a variety of ways:
• One in three families said they were not given any say in how their child’s illness was communicated to other pupils
• A third thought their child’s need for extra help, whether just to catch up or because their ability to learn was impaired because of treatment, had not been properly assessed
• One in five felt their child had been unnecessarily excluded from school trips or activities.
Other problems identified in the report, entitled No Child with Cancer Left Out, included a lack of regular contact between the child’s primary school teachers and their hospital school, with only 36% of parents saying the primary school was regularly in touch.
Another was parents having to fight for home tuition, paid for by local authorities, once their child was back at home, according to some hospital schools. Eighteen hospital schools across the UK took part in the research(1). Two-thirds (62%) of parents surveyed said their child had received home tuition(2), often a vital stepping stone between hospital and getting back to school.
But hospital schools reported a huge variation in local authorities’ approach to providing home tuition, with it sometimes being cut or delayed, which could be down to funding pressures. In some cases, home tuition was not provided at all.
Sadly, nearly half (47%) of parents said their child had grown apart from friends because of their diagnosis and treatment, with friends sometimes not wanting to talk or play any more. The same proportion (47%) said that they felt their child’s school did not help maintain contact with peers and friends when the child was absent.
CLIC Sargent Chief Executive Lorraine Clifton called on government, local authorities and schools across the UK to take note of the research findings and take steps to put in place the support children with cancer need in hospital, at home and at school.
She said: “No child should have to miss out on their education because they’ve had cancer – and it’s distressing to hear that some are teased and even bullied on their return to school.
“Sometimes parents, already struggling to cope with their child’s diagnosis, have to fight to get the help their child needs – and they can feel really let down by the system.
“Funding can be an issue, so we are calling on government and local authorities to ensure children with cancer do not lose out on the home tuition they need because of any more funding pressures in the future.
“Also, it is vital that proposed changes to Special Educational Needs and disability provision(3) take into account the needs of children with cancer so they get any extra help they need at school.”
She added: “The good news is many children do get the support they need when back at school and this report highlights some excellent and innovative work, including helping to keep children in touch with friends and school activities through Skype and social networking, or inviting them into events like assemblies. We want to help ensure this good practice is shared.”
CLIC Sargent will be working to ensure parents and teachers get the information they need to best support children with cancer, and CLIC Sargent nurses and social workers across the UK will continue to help children with cancer and their families access as much support as possible.
1. Seventeen of the hospital schools which took part in the survey are based at specialist cancer treatment centres for children, known as Principal Treatment Centres. One is based at a ‘shared care’ hospital, a local hospital working in partnership with a PTC to provide some aspects of the care a child with cancer needs.
2. There are a number of reasons why children with cancer might not receive home tuition. Home tuition is not always appropriate for children, particularly if they are too unwell, and some children return to school full-time soon after being discharged from hospital.
3. In England these changes will be taken forward as part of the Children and Families Bill.
The research looked at the experiences of children of primary school age, from four to 11, diagnosed with cancer. The research methods used included: a survey completed by 204 parents; a questionnaire completed by 31 children and three children’s activity workshops based on the questionnaire; a survey completed by 12 CLIC Sargent nurses and 27 social workers; separate focus groups of parents and CLIC Sargent nurses and social workers; and interviews with staff from 18 hospital schools.
The quantitative data from the survey of parents is statistically robust despite comparatively fewer respondents compared to some surveys. Every year about 600 primary school age children with cancer are registered with CLIC Sargent. The charity registers about 95% of all children with cancer. This means the sample of 204 parents is statistically robust.
About childhood cancer
Every day, 10 children and young people in the UK hear the shocking news they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.
About CLIC Sargent
CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families. We provide clinical, practical and emotional support to help them cope with cancer and get the most out of life. For more information visit www.clicsargent.org.uk.
Note to sub editors
Please note that the name ‘CLIC Sargent’ should not be abbreviated to CLIC, and that the word ‘CLIC’ should always appear in capitals, as above.