TES talks to...Jo and Tilly Palmer-Tweed

The former head and her daughter tell Helen Amass about their experience with cancer and how schools need to do more to support students undergoing treatment
2nd June 2017, 12:00am
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TES talks to...Jo and Tilly Palmer-Tweed

https://www.tes.com/magazine/archived/tes-talks-tojo-and-tilly-palmer-tweed

To understand how to fully support a child with cancer, a teacher has to first imagine that their own child has been diagnosed with cancer, according to Jo Palmer-Tweed, a former Department for Education adviser and now executive director of a Scitt (school-centred initial teacher training) group and the strategic lead of the government’s Expert Subject Advisory Groups.

She speaks from a position of experience: her daughter, Tilly, was diagnosed with thyroid cancer at just 13 years old.

“The number of people who have said to me ‘I can’t imagine what it must be like’...[well] actually, you need to,” she explains. “You need to try to imagine, because there’s such a lot of fear about saying the wrong thing. But it’s all very logical if you have a child that has a diagnosis.”

Tilly has witnessed this fear first-hand from other students, too.

“Some people do get quite scared and can sort of back off and go ‘No’,” she says.

Tilly switched schools during her treatment to get a fresh start with a new group of friends. Jo says the way the school supported Tilly was a great example to others.

“Before she even started they had been on the phone to her specialist team...so they’d done the work before she even got there,” Jo says. “But, more importantly, they wanted to know, in our view, what sort of things worked to keep her in school.”

“The teachers have actually gotten it right and it’s amazing,” Tilly adds.

But this is not always the case. Impromptu surveys of other parents with children undergoing cancer treatment informed Jo that there were real disparities in the levels of support that schools were providing. While some parents had stories of headteachers who visited pupils weekly on the oncology ward, for example, others told of heads getting the child’s name wrong in assemblies.

Sustaining support for families

While believing this to be unacceptable, as an ex-headteacher herself Jo understands the issue from the other side of the desk. She understands the headteacher who is unsure about how to act or what to do when they’re confronted with the situation; she understands that they may never have considered facing it and knows they have almost certainly not had any training in how to deal with it.

But this is not something that schools can hide away from. In the UK, seven young people are diagnosed with cancer every day, according to the latest figures from Cancer Research UK (bit.ly/ycancerstats).

To attempt to get more consistency in how schools support students with cancer and their families, and to raise the level of support, the Palmer-Tweeds have put together some guidance based on their own experience, as well as that of others who Jo spoke to informally while on the cancer wards where Tilly was being treated. She had numerous examples of both good and bad practice to draw from.

The first thing that emerged as a must-do should arguably be the simplest: an acknowledgement that the diagnosis has happened. In Jo’s view, support commonly fails where a headteacher is reluctant to face up to the issue, neglecting to take a proactive approach from the very start.

“Finding out that a child has cancer is always really sudden and it’s always really shocking,” says Jo. “I wanted to create something that meant that when it happens, there’s something a teacher or head can reach for straight away that says, ‘Right, this has happened. Now, think about doing this, this and this.’ You need to process what it might mean for the child and for your school. Because it is a whole school issue.”

Two of the immediate reactions of a headteacher should be seeking expert advice from the child’s oncology team and having a frank discussion with the family. Too often neither of these things happen, says Jo, because people are too afraid to think about cancer. “As soon as the word ‘cancer’ is involved, people become frightened, because we daren’t imagine what it is going to be like,” she says.

Tilly, who is now 14 years old and repeating Year 9 to make up for the time she missed during treatment, agrees that people often seem afraid to even mention her illness.

“One thing that I think is really important for teachers to know is that ‘cancer’ isn’t a dirty word,” she says, “It’s not a word that should be avoided. The word doesn’t bother me. I don’t think it bothers many patients, because it’s something that we hear regularly.”

Asking the right questions

The guide is full of practical advice for schools. But the overarching message is that teachers need to approach cancer just as they would any other medical condition, both in terms of how they manage the needs of the children with cancer and how open they are about discussing the condition in lessons.

“If a child came to school with a broken leg, you would ask questions about what that child can manage, how the child is feeling, what you might need to do. You’d talk to the parents. But the minute it’s cancer, people are actually quite frightened to talk to you about it,” says Jo.

Tilly is keen to point out that these close discussions with families need to include planning around the social side of school, as much as the academic arrangements. Tilly says that the social impact of her diagnosis was one of the hardest things for her to manage.

“My friendship group completely broke down,” she remembers. “So I think the main thing is for schools to help friendship groups sort of learn to live with this whole thing.”

Talking directly about the issue to students who are friends of a child with cancer can be helpful, Tilly suggests, but teachers also need to be careful that they don’t take this so far that they scare people off, which can be a difficult balance to strike.

The situation is complicated further when you are working with teenagers, who are already struggling to work out their identity before cancer comes along and that identity suddenly becomes “cancer patient”, Jo says.

“It’s difficult. You’ve got children saying: ‘I want to be normal...but could you cater to me individually.’ That sounds like most teenagers. It’s hard to separate what’s normal teenage stuff and what’s cancer-driven.”

So much of what Tilly and Jo recommend has to be underpinned by an unabridged honesty from all involved - student, family and school. To demonstrate the point, Jo delivers the following anecdote: “When she went back to school after her first surgery, I’d said to her, ‘Don’t be surprised if a rumour has gone around that you’re dead.’ Because the minute people hear the word ‘cancer’, they think ‘dead’. So she wasn’t shocked when she went in and somebody said, ‘Oh, you’re still alive. I thought you’d died.’”

If you’re a little taken aback by that, Tilly certainly wasn’t. When a child did indeed say what Jo expected they might, Tilly tells how she responded with: “Yes, rumours of my demise had been greatly exaggerated.’”

Tilly got the all-clear a few months ago. She hopes that her mum’s guide will mean that more schools will have the tools they need to offer children with cancer the right support, without families needing to fight for it.

“I really admire my mum, because she was amazing. She’s really a role model,” Tilly says, and then laughs. “Mum’s listening to me. She’s just gone ‘aww’.”

Jo hopes it will be the start of schools being better prepared for cancer, whether they have a student with a diagnosis in their school or not. Cancer is something every single young person is going to have to deal with, Jo says, and it is a school’s duty to prepare them.

“It’s not something to save for science or maybe PSHE if you’re a bit liberal. Part of our duty of care to children and young people is to actually prepare them, because they’re going to meet people [with cancer]. It’s going to be people they love. There’s some horrendous statistic like it’s one in two people [who will get cancer]. When you start to think about that...you know, we spend an awful lot of time on road safety.”


Helen Amass is deputy features editor for Tes. She tweets @Helen_Amass

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