Children with cancer are receiving inconsistent care, because too few NHS staff understand how to meet children’s specific needs, the Society of Radiographers will hear this week.
Inconsistencies in care include NHS staff administering unnecessary general anaesthetic to children, using words children do not understand and scheduling appointments at times that are particularly challenging.
Approximately 1,900 children in the UK are diagnosed with cancer each year. Incidents of cancer among children have risen by 9 per cent in the last decade, as a result of improvements in diagnostics. Increased survival rates also mean that more children require follow-up treatment at a later stage.
Baseline understanding and building confidence
Therapeutic Radiographers – who deliver radiotherapy to cancer patients – are trained to understand how cancers manifest in children and to provide safe and appropriate treatment. This is embedded in pre-registration radiography degree programmes.
But not all radiography degrees offer training in how to support children and their families emotionally. And the relative scarcity of paediatric patients – as well as the need to avoid overwhelming them – means that many radiographers do not have the opportunity to build up practical experience of working with children early on in their career.
“A lot of training is offered on managing patients with special educational needs or dementia,” Kirsty Thornton, a Therapeutic Radiographer from Nottingham, will tell the SoR’s Annual Delegates’ Conference, held in London this week. “But they’re not offered that same training with paediatrics.
“We want to see more education on appropriate care for paediatric patients and their families, to help provide a baseline understanding and build confidence.”
For example, radiotherapy requires the patient to lie very still. Staff who have been trained to work with children will ask parents to help the child practise lying in the relevant position before the appointment, and to bring an audiobook or toys to distract them during the treatment.
'Make the child feel more like a person'
By contrast, staff unused to working with small children may assume that the only way to ensure they lie still during treatment is to administer general anaesthetic, which leaves them feeling drowsy and unable to resume normal activities immediately.
Similarly, staff without relevant training may be uncertain whether to direct questions to the parents or to the child – and will often default to the former. This can leave children feeling excluded from their own treatment.
Ms Thornton also draws attention to a number of smaller details that all hospital staff working with paediatric cancer patients should be aware of.
For example, many families will not use the word “cancer”, instead preferring, for example, “a lump”. Hospital staff should therefore ask parents which terms they use to explain the cancer to their child.
“For parents, as much as for patients, one passing comment can play on their mind for a long time,” says Ms Thornton.
“What makes a difference can be as simple as remembering small details about the patients. What they like, what they did yesterday or they’re going to do tomorrow. They make the child feel more like a person.”
Every child deserves the same chance
Adjusting treatment times so they fit around the school day and normal bedtimes can also help young patients maintain a sense of normal routine, with minimal disruption.
Holly Roberts founded the charity Larsen’s Pride, named after her five-year-old son, who died in 2019, to improve the lives of children being treated for cancer. Larsen’s Pride provides relevant education to interested departments, and she is campaigning for better training for healthcare professionals more broadly.
“There’s a lot of pressure to give very young children general anaesthetic for radiotherapy, because they don’t think children can lie still,” says Ms Roberts.
“Often, parents don’t have the energy to have these conversations, or they’re intimidated – it’s easy to think your opinion doesn’t matter. But my child had radiotherapy every single day for six weeks. If he’d had general anaesthetic each time, that would have been six weeks I didn’t have with my child.
“Instead, the radiography team scheduled his appointments at 4pm, so he was still able to go to school every day and play with his friends. Otherwise, he would have missed a core part of his childhood – the only real chance he had. Doesn’t every child who’s going to have a short life deserve to have that chance, when the rest of their childhood has effectively been stolen from them?”
Ms Thornton is therefore calling on all university radiography degrees to include at least one lecture on how to work with paediatric patients: “I’m not suggesting everyone should be an expert. It’s about having an understanding of the effect of missing bedtime for a few days or the impact on siblings. Just that awareness is enough to improve the experience for families.”
Ms Roberts agrees. “There’s enormous appetite for training among healthcare professionals,” she says. “It’s always well received. I explain it as an equality, diversity and inclusion issue. Age is a protected characteristic. People have a lot of training around dementia and dealing with older people.
“Children have accessibility issues that we don’t really recognise, in terms of their age. They need interventions to help them to access their care.”
Pushing for centralisation
Charlotte Beardmore, SoR executive director of professional policy, says that many of the inconsistencies in paediatric care would be eliminated if cancer treatment was concentrated in specialist centres.
“Many services are seeming to try to retain treatment of paediatrics when they only see a small number of children a year,” she says. “That’s really the nub of the challenge: we need to push for more centralisation of paediatric cancer services.”
For example, she points out that specialist paediatric cancer centres employ play therapists to help support best practice and ensure that general anaesthetic is only used on rare occasions.
“By centralising care, you ensure that there are always expert specialists across the whole team, able to embed best practice in all treatment pathways,” Ms Beardmore says.
The Society and College of Radiographers will be launching further guidance in the summer, which will emphasise the importance of tailoring care for patients of any age.
Find out more about the Annual Delegates Conference online here.
(Image: O2O Creative/ Getty Images)