The MP for Alyn and Deeside in Wales was expected to speak at an adjournment debate at the House of Commons following a report by CLIC Sargent into the impact of childhood cancer on primary school children’s education. Some children are bullied by their classmates, lose friends and risk falling behind at school because of their condition, according to new research by the UK’s leading charity for children and young people with cancer, and their families.
The Labour MP’s son Max, now 14, was diagnosed with leukaemia five years ago at the age of nine. Max has made a good recovery after undergoing intensive chemotherapy and a stem cell transplant at Alder Hey Children’s Hospital in Liverpool, said Mr Tami. Max was in and out of hospital for more than a year and spent several weeks in intensive care, having suffered organ failure.
Speaking before the debate, Mr Tami said: "At first Max just became a bit lethargic and developed bruises on his legs. We thought initially it was just a viral thing. Then he had further tests at hospital and that’s when he was diagnosed with acute lymphoblastic leukaemia.
"The diagnosis was pretty devastating. It turned our world upside down. It was pretty helter-skelter after that. He was in intensive care for quite a while. His kidneys starting failing and then his liver and heart started to fail too. We were afraid he was going to suffer brain damage at one point. But he’s made a good recovery."
Mr Tami and his wife Sally, a former teacher, drove to and from Liverpool to the Alder Hey Hospital to be with Max while he underwent treatment. Max, who has a brother Oscar, 12, is now in remission and has not suffered any lasting ill-effects. He fitted happily back into his primary school in Flintshire and is now attending secondary school, studying for his GCSEs.
Mr Tami added: "Max had a pretty positive experience going back to his primary school. He wasn’t bullied or anything. In fact, school friends had sent him cards to keep in touch when he was off. The reception he got from other pupils and teachers was fine, but it still took him quite a while to fit back in with his peer group.
“We did ask someone to come in – a hospital nurse or someone from the local education authority – and they explained things to the kids and also to teachers. I think that’s really important. If you’re seven, eight or nine-years-old and one day your friend’s there and then they’re not the next, that’s difficult.
"Their classmates might not see a child who’s being treated for cancer for six months or a year. And then when the child returns to school, they might look completely different, with no hair, they might be thin or bloated because of the chemotherapy or steroid treatment. This could be a terrifying experience for other children. They could be thinking: ‘Is my friend going to live? Am I going to catch it?’ So, it’s important someone goes into schools and talks to children when a child is off sick with cancer."
Mr Tami was due to call on the Government to act on the other recommendations in CLIC Sargent’s report, including:
- Discouraging local authorities to cut funding for hospital schools and home tuition, describing it as "penny pinching", given that the few children affected by cancer meant financial savings were small
- Promoting a more joined-up approach between schools, hospital schools, home tutors and parents, so children can make the transition from hospital to home and back to school more easily
- Sharing good practice amongst schools.
Children unable to attend school long-term because of sickness should still receive suitable full time education. The law does not define full-time education but children with medial needs should have an equivalent of the education that they receive in school. Mr Tami called for more support where needed and that support to continue even on the child’s return to school if they need help to catch up, tapering off as the child catches up.
He is going to press the Education Minister in the debate to ensure that the forthcoming Children and Families Bill does not make things worse for childhood cancer survivors and that changes to special educational needs provision takes the needs of young cancer patients into account.
CLIC Sargent’s report, No child with cancer left out, demonstrated that cancer can significantly disrupt a child's education as well as their ability to make and keep friends. Published last month, it found that youngsters with the disease have been bullied by their classmates because they have lost their hair or gained weight. The report, based on a survey and interviews with children with cancer and parents, looked at the impact of the disease on youngsters' primary education.
The findings show that more than a third (35%) of parents said their child had been bullied or teased when they returned to school because of their cancer diagnosis, or the effects of treatment, such as losing their hair or gaining weight due to steroids.
One parent told researchers that some of their son's classmates tried to steal his hat and another said that their daughter was picked on because she had lost her hair and gained weight.
The report, published to mark Childhood Cancer Awareness Month, found that almost half of parents (47%) said their child had grown apart from their friends. The same proportion said their child's school did not help to maintain contact with classmates and friends while their son or daughter was off.
The study also reveals concerns about the level of education children receive while receiving treatment, and the help they get when they return to school. About 70% of parents said that their child had some form of education when they were off school but just a third (36%) said that their youngster's primary school kept in regular contact with the hospital school.
The majority of families said they did not feel they were kept well-informed about their child's education when their youngster was being taught in hospital. The report points out that there are sometimes delays in getting home tutors for those children who need it, and that some local councils struggle to find the money for home tuition.
Most local authorities set a minimum entitlement of five hours per week, the report says, but a number of CLIC Sargent's social workers said this is not enough and that other groups of children - such as those that have been excluded from school - may sometimes receive more.
When it came to returning to school, more than half of parents (56%) said that their son or daughter found it difficult to readjust to school work, a third thought their child needed extra help and one in five thought that their youngster had been unnecessarily excluded from activities or trips due to their treatment.
CLIC Sargent chief executive Lorraine Clifton said: "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."