‘We make sure that every day they can still laugh and smile’: London’s revolutionary youth cancer treatment | Cancer

On their first day in London, two police officers waved at George from a coffee shop window. On another day, a nurse raced with the three-year-old down a hospital corridor.

The memories are two of many written in a book, logging the best parts of George’s days. Keeping a record of moments for which to be grateful is particularly important to Lisa Radcliffe, after her son was diagnosed with cancer in May after a tumour appeared near his temple.

nurse with mask putting mask on child in hospital

George has since undergone five rounds of chemotherapy. In July, a group of surgeons removed the tumour in his brain and, to ensure the removal of all his cancerous cells, George was referred to a six-week proton beam therapy (PBT) treatment at University College London hospital (UCLH).

“We’ve now been to three different hospitals for his treatment and it doesn’t really matter where you are, doesn’t matter which hospital you’re at,” said Radcliffe, having recently returned home from PBT treatment in London. “It’s the care that you’re given and the people that are willing to build those relationships with you,” she said

young man in hospital treatment room with doctor

Their experience at UCLH, one of only two sites to offer the service across England and Wales, was like a jigsaw puzzle: “Everybody plays their little part in making your time there.” From the security guard who flashed George a thumbs-up, to the play specialist who created a doll with a Hickman line, a narrow tube placed into a vein in his chest, to mirror George’s own.

“You might see doctors and nurses, and amazing machinery, but actually there’s so much more going on behind the scenes that is just helping parents to cope. We need the government to support all of those roles and to understand how vital it is that families are supported,” said Radcliffe.

“It’s so sad these people have come into this career to give, and every day they go into work it’s a fight to give what they need to give because they haven’t got the resources to do it,” she added.

doctor looking at hospital computer next to machinery

It has been just over a year since UCLH first treated a patient using PBT. The form of radiotherapy, given over a number of treatments, is used to treat cancer using protons instead of using X-rays, as with standard radiotherapy treatment with photons.

The treatment relies on energy beams of protons to target the tumour from various angles with a precision that radiates less normal tissue. With the ability to define the energy of the proton, the treatment can only go so far as a pre-determined depth, preserving healthy tissue that is the foremost concern for the hundreds of children and teenagers who visit UCLH for treatment.

Amy Dodd, diagnostic superintendent radiographer with 13 year old Archie. It has been just over a year since UCLH first treated a patient using PBT.

For 13-year-old Archie, all he could do was take it one day at a time.

It began with a headache in late May that stretched into June. An eye test later discovered swelling and bleeding behind his eye, and after being sent to St Peter’s hospital in Surrey, he was returned home without being checked. It was only after travelling to Royal Surrey County hospital that Archie was given a CT scan and diagnosed with a brain tumour.

“I didn’t really know what was going on, and then when I found out I was a bit upset,” said Archie who has since had two brain surgeries, four rounds of chemotherapy and five weeks of PBT treatment.

“I’ve just really got on with it., not let anything really get in the way,” he said. Upon learning he would receive PBT treatment in London, Archie was “very happy”. It meant they wouldn’t have to travel to Germany, Florida or Manchester, which is home to the second PBT service in the country, for treatment.

It’s only since they recently returned to their home in Surrey, that his mother, Chelsea, has been able to reflect. While the diagnosis was terrifying, hospital staff were “amazing” in the comfort and information they provided, she said.

“They work incredibly hard and I just don’t feel that from my experience you wouldn’t know that there’s a big problem going on with the NHS because they just look after you so well,” said Chelsea.

Archie wearing his personalised Chelsea mask. The only other hospital that offers the treatment is in Manchester.

“They’ve just been amazing really, they’ve always been there,” added Archie.

Three days before his PBT treatment started, Archie was shown the machine that would target his tumour. The mask he was given to keep him still during treatment was personalised with the badge of his favouritefootball club, Chelsea.

“I don’t think I’ll be able to rest until you know I’ve seen it for myself,” said his mother. While Archie has been told he is now in remission, the family is still awaiting an MRI scan in January. “I’ve got positive thoughts.”

Rhonda Alexander, health play specialist, left, working with George

Rhonda Alexander, health play specialist

Rhonda Alexander is one of five health play specialists in the radiotherapy department, helping children and teenagers understand their treatment on age-appropriate terms. Using toys, books and equipment, they assess individual patient needs so children are prepared and able to cope.

“We are a group of health professionals trying to give children and young people the most positive experience in hospital and for us in particular, we’re working in the proton beam therapy, so we’re really trying to help children understand what their treatment is,” said Alexander, who has worked in the field for 22 years.

Health play specialists work with George. The specialists help children and young people understand their treatment

It is not simply keeping patients entertained, said Alexander. From explaining the high-energy beams of protons, to using a model gantry to show where the patient receives their treatment and explaining what happens while under general anaesthesia, health play specialists understand children’s needs and advocate for them to be heard.

“Whatever their prognosis is, they have to do a really difficult treatment and helping them to get through that treatment is the most rewarding part of it,” she Alexander. “And once they get through the treatment, also making sure that every day they can have fun, every day they can still laugh and smile and get something good out of having to be in the department every day.”

Amy Dodd , Diagnostic Radiographer

Amy Dodd, diagnostic superintendent radiographer

As a superintendent radiographer, Amy Dodd’s role varies daily from overseeing staffing and training to helping get patients into the right position or interpreting treatment images. Dodd belongs to a team that oversees proton beam therapy treatment on UCLH’s hospital floor.

“Everyone’s got an equal voice in things, it’s not the physicist or the radiographers trumping everybody else. It’s a really multidisciplinary discussion rather than one team leading is really important because everyone’s say is very valid,” she said.

While PBT and radiotherapy deliver the same outcome, the work itself is very different. “There are tighter considerations for imaging because the beam is more sensitive and I think that’s really, really exciting for us because we get more involved in that decision-making,” she said.

Amy Dodd, diagnostic radiographer working with Archie

But the frenetic past few years, in which the NHS has suffered intense pressure from the Covid pandemic and the ensuing record backlog, has taken its toll.

“I think at the moment, in radiotherapy as a whole, people are suffering from burnout,” she said.

Callum Gillies, proton therapy physicist

Callum Gillies and Sarah Gulliford, proton therapy physicists

Working on one of two PBT treatment sites in the country is both exciting and terrifying for physicist Callum Gillies, who has worked with various centres and professionals from Baltimore to Manchester in order to develop best practices. There are fewer known standards and practices, but it is also a collaborative affair, he said.

“It’s really exciting to be at the kind of front end of clinically deliverable treatments. But also a bit scary, too,” he admitted.

Once a patient has been diagnosed with cancer, a team of physicists including Gillies and Sarah Gulliford work to optimise the best angles to target the tumour and minimise damage to healthy tissue.

“We rarely meet them,” Gulliford said of the patients. “But we hear their stories and it’s amazing to be part of their treatment journey in a way that hopefully will help them to live long and happy lives.”

But it’s a tough profession, Gulliford admits. They work long hours, which she says is a “no-brainer” when it comes to patient care. But like many health professionals, there have been challenges in recruiting top talent, and living in London is expensive; leaving many of the staff to commute from outside the city.

“I find the whole state of the NHS a little bit worrying, not just for ourselves as physicists,” she said.

“We do our very best within our job, but we need as much funding and support and recognition for the role of the NHS and what it does within cancer services and beyond.”

Yen Ching Chang, Oncology Consultant

Yen-Ching Chang, oncology consultant

Yen-Ching Chang has seen the development of UCLH’s PBT treatment from start to finish. More than a decade ago, then working as a registrar, Chang travelled to Paris to learn more about the treatment. Last December, she led as they treated their first patient.

“We have a whole team of people that sits behind the scenes that I think the public never realised,” said Chang, a clinical lead for the PBT service and a paediatric radiotherapy specialist.

The paediatrics team has seven or eight patients in the planning stages of their PBT treatment. Another eight or nine patients are receiving treatment in London over a period of several weeks.

“Most of our staff did not come to work with the NHS to make big bucks, they came to make a difference and because they really feel the NHS is something important,” said Chang. “People are working extraordinarily hard. People are working, trying to work out innovative ways to deliver a better service with less resource because that is actually where we are.”

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