Don’t just help patients to live, help them to live well: inside the first head and neck late effects service

It was a one-year follow-up with a past patient that inspired Sabina Khan to establish the head and neck late effects service at University College London Hospital (UCLH).

The patient had been treated radically with radiotherapy with curative intent after being diagnosed with an oropharyngeal squamous cell carcinoma. A Therapeutic Radiographer at UCLH, Sabina was looking forward to hearing how the patient had fared since their treatment had ended. But at the joint consultation with the oncologist, Sabina was dismayed when the patient shared that they hadn’t felt ill when they were diagnosed, but felt quite unwell after being treated. They were suffering from dry mouth and fatigue and were struggling to keep up with their lifestyle both at home and at work.

The late effects of radiotherapy have often been an overlooked area of healthcare and can leave patients feeling forgotten and isolated when dealing with the impacts cancer treatment has on their life, sometimes years after they have been declared cancer free. But a growing number of late effects clinics are starting to turn the tide and give proper attention to the often life-altering side effects of radiation therapy, including the service founded by Sabina at UCLH.

The clinic provides treatment to patients with late effects symptoms from head and neck cancer that may otherwise be treated in isolation, without proper consideration for past cancer treatment. It has had more than 450 referrals from oncologists, surgeons, primary care professionals and other health professionals since it opened in November 2023, a number that also includes self referrals. It has helped many patients deal with the physical and emotional late effects of treatment and begin to recuperate.

Synergy caught up with Sabina to learn about how she set up the service, how it has helped patients to thrive – not just survive – and what it was like to win a prestigious Macmillan award for her efforts.

Laying the groundwork

I arrange to meet Sabina on a warm late April morning, outside UCLH, a busy hospital located just a few minutes’ walk from Warren Street station in Central London. Sabina works as a Macmillan consultant head and neck Therapeutic Radiographer in late effects at the hospital’s Macmillan Cancer Centre.

We are soon joined by Katie Thompson, president of the Society of Radiographers, as, officially, we’re there to mark Sabina’s success at the Macmillan Professional Excellence Awards, where she won the prestigious Whatever It Takes – Clinical Expertise accolade for her work pioneering the late effects service. But an opportunity to tour the centre’s radiotherapy department was too interesting to pass up.

Sabina is a familiar face at UCLH. After sixth form, she studied radiotherapy and oncology at City St George’s, University of London from 2004 to 2007 and found herself in UCLH on placement. She began working at UCLH after graduating and has remained there since. “I rotated within the pre-treatment, planning and treatment areas and all sorts of places within radiotherapy,” she explains. “I think that’s what makes it amazing for what I do now, because I have experience of the whole pathway, from diagnosis to after treatment.

“If I didn’t have that experience as a radiographer delivering treatment and supporting clinics, I would not be where I am today. It laid the foundation for what I wanted to do later on and understanding the business of it.”

SoR president Katie Thompson (left) and Sabina

Starting a six-year process

Sabina spent 10 years as a Therapeutic Radiographer at the hospital before making the move to put the late effects service in motion. She describes radiation as “the gift that keeps on giving” – one that can rid a patient of cancer, but also comes with life-altering side effects such as swallowing issues, skin irritation and fibrosis.

In learning how the late effects service came to be, it’s clear from the outset that it was a group effort, encompassing departmental and patient support. Sabina’s first step was to bring the idea to Nazima Haji, radiotherapy services manager at UCLH. “You don't have to be an expert or be the most academic person - I am certainly not. But it takes one person to have an idea to help change practice. Instead of saying no, they say: ‘How? What can we do?’ and be patient. Nazima’s incredible,” says Sabina.

(L-R) Claire Rhodes, Katie Thompson, Sabina Khan, Laura Allington in front of the LINAC machine

Support from the start

Sabina leads Katie and I down to UCLH’s radiotherapy department, where we are introduced to Laura Allington and Claire Rhodes. Both are Therapeutic Radiographers and both have additional roles in the department. Laura is the operational lead for proton beam therapy and Claire is the interim radiotherapy services manager while Nazima is away.

With the cogs turning to bring a late effects service to UCLH, Sabina came to Laura and Nazima with the next big question: ‘OK, what do I do now?’

Encouragement from the multiprofessional team in the radiotherapy department also played a crucial role in creating the service. “We had great engagement from our head and neck surgeons as well as oncologists,” Sabina explains, “because the surgeons are expected to follow up with radiotherapy patients, but they have limited knowledge of radiotherapy.

“Credit to our head and neck surgical and oncology team because they listened to the idea and they said to go for it. And if I hadn’t had that, the service wouldn’t have been created.”

Though Sabina spearheaded the late effects service, she stresses the fact that the support of those around her ultimately made it a success. “When you have such an incredible radiotherapy lead or manager – a manager who understands your role, the need and what can happen – they can enhance so many people.”

Initially, the department couldn’t get the funding it needed to set up the service. This was for a multitude of reasons – most pressingly, the Covid-19 pandemic, which strained resources across the health service. It was Macmillan that ended up providing the funding for Sabina’s head and neck consultant post for two years, beginning in April 2023. Practically overnight, she found herself in charge of a number of unfamiliar roles, like project manager and clinician.

Sabina says it was her experience in seeing the implementation of proton beam therapy at UCLH that helped her understand what needed to be done to get the service up and running within six months.

‘We have a duty to our patients’

The resources UCLH provided helped enormously during this time. Knee deep in setting up the clinic, Sabina was in contact with staff from all over the hospital network trying to seek support for setting up the service, all the way up to CEO David Probert. “That’s where UCLH is incredible,” she says. “If you ask, you get. And if they can’t do it financially, they’ll do it in a different way. And that’s what I needed – I needed the knowledge.

“Credit to this whole trust – I can’t sing its praises enough.”

Sabina also shared that her experience shadowing the South West Alliance and Nottingham Late Effects service was instrumental in her understanding the challenges new services face.

Things were touch and go in April 2025, when Macmillan’s two years of funding came to an end. Then the radiotherapy department at UCLH stepped in to fund Sabina’s role, and her position was made permanent.

A listening ear

While forming the service, Sabina turned the normal process on its head and organised a stakeholder event with patients first instead of staff. Here, she was able to ask those who knew best what they would want from a late effects service. This two-hour stakeholder event ended up being such a success that it unexpectedly gave way to the popular late effects support group. “It was an accident,” Sabina admits. “There was laughter, there were tears and there was a lot of obscene language – but in a funny way. It was just raw, and it was honest. And so many people said ‘I wish we had this’. So I thought: ‘Right, I’m going to figure this out.’”

Encouraged by Nazima, Sabina officially established the support group, which has been hugely beneficial to the emotional health of late effects patients. “My manager said that it was a great idea and persuaded me to use the Macmillan Support and Information Service to run it. What we didn’t expect was for it to go out of control. It’s every month, it’s a forum and it’s so much fun!

“Which is a weird thing to say when someone’s struggling but, actually, we can sit as a group. I’ve got patients who are willing to take over, and some who are longstanding. We’ve lost some patients to side effects as well, not just the cancer.”

More than one year on from Sabina’s role becoming permanent, the immediate worries of founding and funding the service are in the rearview mirror. Today, alongside facilitating treatment, the late effects clinic provides support and education trust-wide so patients from all departments can live well.

Widespread recognition

As well as improving the lives of patients who would otherwise be suffering, the service has also provided the opportunity for Sabina – a mum of two – to lead in a way that is personalised to her. She says this could not be done without her manager and radiotherapy department lead. She recalls times when she encountered issues with childcare and how she was supported in the workplace. “Women in the workforce –we need them,” she says.

“You’re going to lose a whole amazing part of that workforce if you don’t listen to those people’s needs. Personalised care isn’t just for the patients, it’s for the staff.”

We get on to the subject of Sabina’s success in the Macmillan Professional Excellence Awards. Though Sabina found the attention a little overwhelming, she is pleased that it has brought more attention to the clinic: “As awkward as it is as one person, for the service, it’s incredible.”

Katie offers another perspective – how invaluable the recognition is in substantiating the clinic’s goal. “It validates everything,” she says. “It validates Macmillan for giving you the money for the trial; it validates the decisions that your leader, your manager, made to give you your funding for your role. Because you can say: ‘Look, we’ve won this award; we’ve only been running it since 2023 and we’ve got a national award for this service.’ That’s huge.”

Sabina with her Macmillan award

All the Macmillan Professional Excellence Award winners

Patient-centred care

Sabina found herself going to the back of beyond to get what she needed for her clinic – whether that be knowledge, funding or simply support. “I’ve banged on the most random doors,” she tells us. “I went to videofluoroscopy units; I went to a Botox clinic looking at neck spasms.

“Sometimes you’ve just got to persevere, knock on those doors figure it out. The support I got was incredible.”

In the end, patient wellbeing is at the very centre of all of Sabina’s work. “Some patients won’t be cured of their late effects – we know this, and we acknowledge it too. But you want them to have the best quality of life they can have in that time,” Sabina concludes.

“What’s the whole point of our profession? It’s that patient. They’re not that lovely picture that you sign off; they're a human being at the end of the day. How did [radiotherapy] impact that person? That’s why I think UCLH is great for holistic care.

“We need to help these patients. My ethos is to help people not just to live, but live well.”

More about radiotherapy late effects

The Society of Radiographers launched a Late Effects Special Interest Group (SIG) in 2021. The SIG aims to provide a place for Therapeutic Radiographers to share knowledge, clinical expertise and different perspectives on treating late effects, as well as lead improvement and innovation in managing late effects.

It is chaired by Lisa Durrant and co-chaired by Emma Hallam. To learn more about the group, and apply to join, read more here.

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