Although your child will no longer receive active treatment in hospital, they will continue to be part of an important aftercare support service. There are now new models of care and support for people living with and beyond cancer within the NHS system and your child will receive follow-up care and support well into adult life.
Sometimes, problems related to cancer treatment that occur or persist after treatment is finished are known as late effects. This is why your child will be continually monitored and assessed to ensure that if such problems occur, then they will receive the right treatment and support.
When treatment finishes
When your child finishes treatment, they will be seen frequently in clinic. How often varies between treatment centres, but it is usually every 4-6 weeks during the first year. At the very beginning, they may still be seen every 1-2 weeks.
You should receive from your hospital team:
- An end-of-treatment summary which shows all of the different treatments your child received including the names of any chemotherapy drugs used, surgical procedures undertaken and radiotherapy received.
- A care plan, which should be shared with your GP and shared care consultant, outlining:
- number of follow-up visits needed and where they will be
- what blood tests, x-rays or scans are needed to ensure the cancer has not come back and how often these will be performed
- possible side effects of treatment (called late effects) and what tests are needed to monitor these
- any additional support needed for education, finances or psychological concerns.
- A keyworker whose job is to support young people through the early years after treatment.
Long term follow up
As time goes on, the length between visits usually increases to every 3 months in the second year, and then only once a year after 5 years have passed. The emphasis of follow-up appointments changes from checking the cancer hasn't come back to looking for any late effects of treatment. At a point along this pathway, your child's care will be transferred to the 'late effects' multidisciplinary team (MDT) which consists of a team of specialists trained to deal with longer terms issues that can arise following cancer treatment.
Who will look after my child?
The team will have core members consisting of:
- a consultant paediatric oncologist specialising in the late effects of treatment
- a specialist late effects nurse
- an endocrinologist (hormones specialist)
- a team coordinator.
In addition, the late effects team should have access to allied health professionals, psychological services, fertility specialists and an adult oncologist to support patients as and when required.
What are the different types of follow-up care?
Your child will be offered different types of follow-up care which is tailored to individual level of need and depending on previous treatment and current state of physical and psychosocial wellbeing. These may include:
- consultant-led care for patients with more complex health needs
- nurse-led care with a specialist nurse trained to provide follow-up care either face to face or over the telephone
- supported self-management where parents and patients are given the education and information needed to manage the child's health with the support of of their GP and the reassurance of being able to re-access the care of the Late Effects team if needed.