Nicky Webb, Clinical Nurse Specialist for the long-term follow-up of survivors of childhood cancer and joint Chair of the Children’s After Cure Nurses UK Group.
What are long-term follow-up clinics?
Long-term follow-up clinics, beginning approximately five years post-treatment, help detect and manage any problems caused by a young person’s cancer or its treatment, to ensure the best possible quality of life for patients.
Why do we have long-term follow-up clinics?
As children and young people reach around five years on from the end of active treatment, the focus moves from monitoring the risk of recurrence to observing late effects of cancer and/or its treatment. Attending long term follow-up clinics helps families move forwards as the appointments focus on growth, educational needs and reaching developmental milestones, like puberty.
Families have a key worker allocated who they can contact to help with the transition from off treatment follow-up, plus ongoing psychological support is in place as patients move through adolescence into adulthood. Links to other services can be made and there’s a huge emphasis on the importance of educating patients in relation to maintaining a healthy lifestyle to help reduce risks of developing second cancers and other health-related problems.
What can patients expect?
Your consultant will talk to you about moving care across into long-term follow-up (with either another consultant or, for many patients, within a nurse-led service). Visits tend to focus on any late side effects of treatment so they can be spotted early and treated quickly. This can be daunting, but it’s important that all children and young people are given this information and supported as they move towards their own independence, and transition back to their GP.
Growth measurements will usually be recorded until the patient turns 18. Blood tests and scans will also be repeated occasionally. Every patient receives a detailed care plan which lists all future surveillance and other healthcare needs. This information will be discussed, together with why they’re important in ensuring ongoing good health. Services also provide support with education, benefit reviews and psychological needs.
Appointments are usually just once a year and can be slightly longer than previous clinic times.
Why are they important?
As children and young people approach independence and start taking control of their own personal life choices, it’s hugely important that they’re given information surrounding their diagnosis and treatment so they can make informed choices. Monitoring late effects ensures early detection of potential problems and intervention, if necessary. Some centres will accommodate appointments around key times in education to avoid further disruption and, if possible, see young people during holidays.
What happens when children become adults?
Not all patients need to continue attending regular hospital appointments, many can have their follow-up with their GP. This will be discussed very early on, so everyone, including GPs, is aware of future transition plans and long-term requirements. Many centres now offer ‘patient-initiated follow-up’, so even after transitioning back to your GP you can re-engage at any time.
There are a group of patients that, due to the complexity of their treatment or consequences of surgery, require ongoing consultant follow-up. They’ll be made aware of future transition plans into a specialist adult service or an adult long-term follow-up service for survivors of childhood cancer
Have a question to ask one of our experts?
Please get in touch by emailing info@cclg.org.uk or via DM on our social channels. We may feature your question in a future ‘Ask the Expert’ to help other families and patients who have the same question.
From Contact magazine issue 94 - Spring 2022
