'You're not alone'
The South West Radiotherapy Late Effects Service has helped hundreds of patients in a very short space of time. Synergy finds out more
The impacts of the late effects of radiotherapy can be enormous for patients.
While radiotherapy is a lifesaving treatment, delayed side effects can emerge decades after treatment has finished, and can significantly impact quality of life.
To help patients overcome the late effects of their radiotherapy treatment, a handful of regional Radiotherapy Late Effects Services popped up to carry out vital work, receiving financial support from national cancer support charity Macmillan.
A group of therapeutic radiographers from across the south west of England have established their own regional Radiotherapy Late Effects Service, with ambitious plans to help hundreds of patients with their delayed symptoms.
Ambitious aims
Services at the Bristol Centre for Haematology and Oncology, Gloucestershire Hospital, and the Royal United Hospital (RUH) in Bath have been established to work jointly with an existing service at Musgrove Park Hospital, with the support of Macmillan funding, to form the South West Radiotherapy Late Effects Service.
The team have also been working with colleagues at hospitals in Exeter, Torbay and Truro to support services across Devon and Cornwall.
Launched in August 2022, the project will run until August 2024, with the hope that funding will be secured for a substantive service beyond that.
The project aims to support 600 patients over the two year period. At the time of writing, the service had admitted over 400 patients, and so it is well on the way to achieving its target.
As well as supporting patients, the team aims to improve awareness of radiotherapy late effects within the profession and among the wider multidisciplinary team, delivering training sessions and support in a number of educational settings.
Impacts of late effects
The late effects of radiotherapy ( those that develop six months or longer post-treatment) can vary widely and, depending on the part of the body treated, may include bowel and bladder disorders, pain, swelling, sexual dysfunction and fatigue.
These physical symptoms can develop months, years, or even decades after undergoing radiotherapy, and can have a significant impact on a person's quality of life.
Hazel Clarke
Macmillan Late Effects Radiographer
Royal United Hospital
Hazel, said: “Radiotherapy is an extremely effective, lifesaving treatment and the majority of people who receive it will not experience any long term side effects. However, this service is here to provide support for those who do.
“Our focus is on improving quality of life for our patients. We really get to know each person, listening to them and understanding what it is that matters to them. This enables us to set personalised goals and we work with the patient to achieve these, improving their symptoms and enhancing their overall wellbeing.”
Samantha Bostock
Macmillan Late Effects Lead Radiographer
Gloucestershire Hospital
Samantha said: “Late effects can develop after many years and patients therefore don’t always associate their symptoms with their previous cancer treatment. This can occur from six months to many years after treatment has finished and is due to permanent changes in tissues. Chronic pain, incontinence and lymphoedema are examples of late effects.”
Patient experience
John, 75, from Keynsham, near Bristol, was first diagnosed with prostate cancer in 2013. He initially had a prostatectomy, a procedure in which the prostate is removed, and received the all clear, but the cancer returned in 2020. John then underwent radiotherapy which is when he started experiencing late effects.
John said: “For me the effects of radiotherapy happened fairly soon after treatment began and affected my bowels. I suffered from debilitating diarrhoea, I was too nervous to leave my house because I needed to be near a toilet. It was really affecting my quality of life.
“I was referred to the Radiotherapy Late Effects Service and met with Hazel to discuss my history and symptoms. I was prescribed medication which has been transformative but even before this, just having someone to talk to was such a benefit to me. Knowing that I wasn't alone in this and that late effects is a real condition which can be managed was really reassuring.
“Since starting treatment my life has opened up. I've been able to book a holiday for the first time in two years as I finally feel confident enough to get out and about. I would strongly encourage anyone who thinks they might be experiencing late effects to reach out to the service for help.”
Problem solving as a team
Late effects radiographer Zoe Walker recaps the South West group's team meeting on November 23, 2023:
“This meeting was an opportunity for radiotherapy service managers, Macmillan, SWAG (Swindon, Wiltshire, Avon and Gloucestershire Cancer Alliance) and the integrated care board to meet to look at how the service has been progressing.
“We reviewed the learning, patient numbers and looked at any outreach work and teaching we have achieved as a team over the last year. We reviewed the data we had collected to date and looked at future recruitment. We also celebrated winning the Macmillan Professionals Excellence Awards for Innovation Excellence 2023.
“The afternoon part of the meeting was brainstorming what we want the SW Regional Late Effects Service to look like going forward and how we hope to achieve this both within our local trusts and as a regional service.
“These meetings are a great opportunity for us to meet face to face and discuss our individual services.
“We also discuss barriers we have encountered, problem solving as a team can be very productive. This is a new and exciting service: we have shown team working is definitely the key to developing a great service for all patients.
“We hope to show that our team working is the ideal model for other regions developing radiotherapy late effect services throughout the country.”
Why I got involved
Lisa Durrant
Macmillan consultant radiographer,
Musgrove Park Hospital
“I have been involved in clinical services for radiotherapy late effects since 2017. This regional service is a significant development for patients, acknowledging that people affected by cancer can have significant challenges after their treatment, and for radiotherapy centres by demonstrating that therapeutic radiographers can set up and lead late effects services. It is a pleasure and inspiration to work with such a motivated group of radiographers.”
Suzanne Hill
Advanced practitioner radiographer,
Torbay Hospital
“I have always strongly believed that there is a responsibility to deliver ongoing support to radiotherapy patients. This pilot project has at last afforded the opportunity to be involved in such a unique approach in setting up and delivering equitable care across a wide region where previously these services did not exist. The collaborative working approach has been truly inclusive and has had a wide reach into many other disciplines, educating and informing not just a huge number of patients who have had many unmet needs, but also other health care professionals from many other centres. This is not just regionally but nationally and internationally, raising the profile of the expertise within the radiotherapy workforce and the strong desire to make the difference in delivering personalised care. We are empowering patients to engage with healthcare in a partnership approach with the aim to support, acknowledge, validate and help them with the long term consequences of their cancer treatment, and all within a year!”
Zoe Walker
Macmillan radiotherapy late effects radiographer,
Bristol Cancer Institute
“I moved to this project from being a treatment floor band 7, and I felt the challenge of setting up a new service was an exciting prospect. We’re now 18 months in and it has been a whirlwind of networking, building relationships and learning. As part of the SW late effects team, we have achieved far more than I would have individually. Weekly multidisciplinary team meetings allow me to initially discuss simple cases, to now looking at more complicated patients. Group learning on topics such as fatigue, pain, sexual function, incontinence, pelvic floor and psychological issues have helped upskill us as individuals and a team. This has also allowed us as a team to standardise referral first line advice given and streamline local and regional referral pathways. As a therapeutic radiographer one of the important parts of the role is looking at treatment plans and understanding why the patient has developed the late effects, feeding back to the wider oncology team on how to improve future treatment.”
Find out more...
Funded by UK cancer charity Macmillan, the South West Radiotherapy Late Effects Service was established in August 2022 and will run until August 2024.
Initially, patients can be referred to the service by GPs and other healthcare professionals and they will soon be able to self-refer.
Image credit: James Aitken Photography
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