Teenagers with cancer risk being left behind at school

Failure to provide young people with the extra support they need after treatment for cancer could jeopardise their education and prevent them from fulfilling their potential, according to a new report by CLIC Sargent.

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Only 15% of secondary school teachers said there was enough information or guidance to support a secondary school pupil with cancer1. Some teenagers said they did not get the support they needed to catch up once back at school.

As one teenager said: “You’re fighting a losing battle from the day that you go back. There are so many of you in one class that the teacher can’t be with you all the time, telling you what to do. You can’t hold the class back.”

In an earlier survey by CLIC Sargent, the UK’s leading cancer charity for children and young people, two thirds of 16 to 18-year-olds said they fell behind in their studies or performed worse than expected. Three out of 10 said they had to leave education altogether2 – one of the 22 young people interviewed for this new report said he left school before finishing his GCSEs because of the lack of extra support.

Survivors of childhood cancer, who may have had treatment for up to three years, may perform less well than their peers in education, studies show3. Survivors’ ability to learn can be affected by fatigue, problems with concentration and emotional difficulties.

Sometimes teachers could be better informed, young people said. One said their teachers did not understand how treatment had affected his ability to learn, saying: “It was almost as if ‘the cancer is gone now, so it’s over’, but it doesn’t really work that way.”

Some, but not all, young people said they did receive the tailored support they needed from school, according to the report, No teenager with cancer left out, published on 10 July 2013.

Based on what they said was helpful, the report recommends that all young people with cancer should have a formal needs assessment, with support in place on return to school, and one-to-one tuition to fill in gaps in learning.

Teenagers cited clear communication with staff and peers about their illness as being important. Addressing the subject in an assembly helped improve understanding, and when head teachers took a personal interest, it helped improve awareness of their situation amongst teachers. Other good practice by schools highlighted in the report includes: re-arranging timetables so a physically exhausted teenager doesn’t have to walk so far between lessons; permission to eat and drink in class – steroid treatment increases hunger and thirst; and offering a laptop or extra time during exams, if needed, because of difficulty writing and fatigue.

CLIC Sargent Director of Services Dara de Burca said:

“Being diagnosed with cancer is devastating at any age. But young people of secondary school age have to cope with cancer at a time of profound biological, psychological and social change, as they become young adults. Cancer can also make young people feel isolated and can damage friendships.

“Changes like weight gain, caused by treatment, can leave them feeling acutely self-conscious. On top of all this, they’re at an important stage in their education. So they really should be given all the help they need to achieve their full educational potential.

“Teachers really want to help, but understandably they may feel nervous and unsure about what to do – they may never have had to help a teenager with cancer. The report identifies many excellent examples of how schools support young people really well. We will make sure this good practice is shared.” 

Many young people who took part in the study, including those facing GCSE or A-level exams, feared having to retake a year and being left behind by their friends. Another problem identified was tuition at hospital or at home – a key way to keep up with school. Some felt the work they were given at their hospital school was meant for younger children. Many reported they were left behind because of poor communication between their school and hospital teachers, with delays in sending them work. Good practice included regular email contact with them, being able to access work online and home tuition tailored to their needs.

CLIC Sargent’s health and social care professionals often play a key role in helping maintain communication between the family and school. They may go into a school and offer teachers advice, or develop a plan to help the school meet the teenager’s needs.

This research builds on CLIC Sargent’s report last year, No child with cancer left out, into the impact of cancer on children’s primary school education. Every year about 2,000 young people, aged 16 to 24, are diagnosed with cancer per year in the UK4. This latest report will inform the charity’s work with policy-makers, for example making sure the Children and Families Bill makes provision for children and young people with cancer in England to get the support they need. CLIC Sargent is also going to produce information and resources for schools to enable them to provide the support young people with cancer need.

Notes to editors:

  1. In January this year, Government issued new guidance, which CLIC Sargent helped develop, for local authorities in England setting out their legal responsibility for ensuring children and young people with medical needs get a good education. The guidance is called Ensuring a good education for children who cannot attend school because of health needs.
  2. For more information, an interview, case studies and pictures of young people with cancer and their families, please contact Robert Westhead on 020 8752 2856 or by email at robert.westhead@clicsargent.org.uk. Outside office hours please call 08448 481189.


Footnotes:

  1. The Teacher Voice survey in March 2013 of 788 secondary school teachers by the National Foundation for Educational Research found that 38% “disagreed” or “strongly disagreed” that enough information resources and guidance are available to support a pupil with cancer in school. The NFER survey in March 2013 also found that more than one in four (27%) of secondary school teachers said they did not know whether enough information, resources and guidance were available.
  2. CLIC Sargent (2010): More than my illness: delivering quality care for young people with cancer
  3. Lancashire, E et al (2010) Educational attainment among adult survivors of childhood cancer in Great Britain: A population-based cohort study. Journal of the National Cancer Institute, 102: 254-270.
  4. Cancer Research UK: data http://www.cancerresearchuk.org/cancer-info/cancerstats/incidence/age/#Children


Research methodology

The report was based on focus groups and telephone interviews with 22 young people, aged 13-19, who have or had cancer during their secondary school education.


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.

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