No child with cancer left out executive summary - CLIC Sargent

ExecutivesummaryNowith cancerleft outThe impact of cancer on children’sprimary school educationchildCLIC Sargent, the UK’s leading cancer charity for children andyoung people, has published new research which shows that acancer diagnosis can have a significant impact on a child’s primaryschool education, sometimes leaving them feeling isolated and alone.No child with cancer left out sets out the findings from our consultation with221 parents, 60 children, 68 CLIC Sargent health and social care professionalsand 18 hospital schools. We asked them to consider the impact of cancer onchildren’s primary school education in terms of:ccLearning in hospital or at homeccReturning to school during or after treatmentccSocial needs and support.www.clicsargent.org.ukwww.clicsargent.org.uk

Key findingsLearning in hospital or at homeccOver two in three (70%) parentsreported that their child had receivedsome form of education away from theirprimary school during their treatment,mostly through hospital schoolsccAll of the hospital schools we spoke totold us that the level of communicationvaries considerably from one primaryschool to anotherccMore than one in three (36%) parentssaid their child’s primary school wasin regular contact with their child’shospital school during their time inhospital – but the majority of families didnot feel they were kept well-informedabout their child’s education whentheir child was taught in hospitalccSome children with cancer found itdifficult to access home tuition, andsome never managed to access it at all.Almost all the hospital schools we spoketo reported problems with home tuitionccJust over half (56%) of parents said theywere satisfied that their child wasgiven suitable school work whenthey were being taught at homeReturning to schoolccAlmost two in three (63%) parents toldus they felt well-informed about theirchild’s education at their primary schoolfollowing their cancer diagnosisccAlmost two in three (64%) parents saidthey were consulted about how their child’sdiagnosis should be communicated to otherteachers and school children – although onein three were not consulted on the matterccJust over half (56%) of parents of childrenwho have returned to school felt thattheir child had received sufficient supportto enable them to resume as normal aneducation as possibleSocial impact and supportccMore than one in three (35%) parentssaid their child had experienced bullyingor teasing from their peers because oftheir cancer diagnosis and treatmentccAlmost half (47%) of parents said that theirchild had grown apart from friends becauseof their cancer diagnosis and treatmentc c Almost half (47%) of parents saidtheir child’s school did not help tomaintain contact with peers and friendsduring their absence from school.

The impact of cancer onchildren’s primary school educationOur research has demonstrated that cancer can significantly disrupt a child’seducation – nine in 10 (90%) children told us that their cancer diagnosis andtreatment made a difference to their school life.Our findings show that improvingcommunication between educationprofessionals, a pupil with cancer and theirfamily can considerably lessen the impact ofcancer on a child’s primary school education.Good communication, for example, canenable a child with cancer to keep in touchwith classmates when they are absent fromschool, allow for a smoother transitionwhen they return to school and helpparents feel empowered and informed.Raising awareness, and building knowledgeand understanding of the impact of cancer ona child, can help teachers and other pupils tobetter understand and support a classmate withcancer during and after cancer treatment.It is essential that information abouthospital education and hometutoring services are madefreely available to parentsand professionals inorder that they canmore easily accessthese services.“The overwhelming success was thehome tutor that our local councilprovided. They were just wonderful. Wereceived incredible support and everyfamily should have that as standard.”Parent of a child with cancerCLIC Sargent wants to see a primary educationsystem that enables children diagnosed withcancer to receive the support they needquickly, and for as long as they need it, sothat cancer does not unnecessarily impact ontheir education or their social and personaldevelopment. In order for this to become areality, systems for funding hospital schools andhome tuition must be fair and transparent toenable children with cancer to receive sufficienteducation that is flexibleenough to meettheir needs.

Ways forwardPolicy and influencing Proposed changes to SEN and disability provision across the UK, in particular the Children andFamilies Bill in England, must take into account the needs of children with cancer. CLIC Sargentwill seek to raise awareness of their needs and influence policy makers to ensure that childrenwith cancer receive the support they need in education to achieve their full potential Government funding reforms must ensure that hospital school and home tuition fundingarrangements allow children with cancer to access appropriate, quality provision. We willcontinue to work together with hospital schools to ensure that government funding reformsare informed by the needs of children with cancerInformation Good information for children, parents and professionals on how they can support continuededucation during cancer treatment and beyond is vital. Parents must be empowered withinformation about how the education system works, their child’s rights and how to accessthe support that they need. CLIC Sargent will signpost families and professionals to existinginformation and work in partnership with others to develop resources where there are gaps Our research illustrates a number of good practice examples of how to support children learningin hospital, at home and when they return to primary school. We will share these ways of workingwith policy makers and education professionals to help them gain new insights and inspirationCommunication and engagement Primary schools, hospital schools and families play a vital role in helping children with cancerstay in touch with classmates when they are absent from school. CLIC Sargent will seek to raiseawareness of good practice, such as encouraging phone calls and letters and by maximisingthe use of technology Our research shows that by primary schools adopting an individualised and flexible approachto supporting the child, the experience of children returning to school during and after cancertreatment can be greatly improved. CLIC Sargent will share examples of good practice andprovide information to schools encouraging them to deliver the reasonable adjustments that achild with cancer might need on their return to school Our research highlights the importance and benefits of improving communication betweeneducation and other professionals involved in a child’s cancer journey, and CLIC Sargent willshare the findings and best practice to support a more integrated response. In particular, we willpromote the use of Teachers’ Days as a particularly effective tool in improving primary schoolteachers’ understanding of childhood cancer.To download a copy of No child with cancer left out go toour website www.clicsargent.org.uk/nochildwithcancerleftoutor email info@clicsargent.org.ukRegistered charity number 1107328 and registered in Scotland (SC039857)12SM159c