The Brainy Bag is available to all children diagnosed with a brain tumour, containing information and treats.
To ensure that your child receives the best possible care, a team of healthcare professionals from different specialities will come together to treat and look after your child. You may hear this team called the MDT, which stands for 'Multi-Disciplinary Team'.
The MDT works together to create an individual treatment plan for your child. It meets regularly to ensure all aspects of this care plan are carried out, reviewed (and changed, if necessary) as treatment continues.
To help you understand the different roles of the healthcare professionals you may meet, here is a brief description:
A neurologist specialises in problems relating to the brain, spinal cord and nerves in the body. They can be involved at all stages from diagnosis to follow-up after treatment is complete.
Your child will be referred to a neurosurgeon if their tumour can be operated on - either for removal of all or part of the tumour
(a 'craniotomy') or to remove a small piece of the tumour (a 'biopsy'). Your child will see their neurosurgeon before and after surgery and for follow-ups in outpatient clinics. For further information, see our Neurosurgery in children fact sheet.
A neuropathologist diagnoses diseases of the central nervous system (brain and spinal cord) by looking at a sample of the tumour tissue removed by the neurosurgeon. The neuropathologist will look at the tumour cells under a microscope and also analyse the tumour's genes. From these examinations, the neuropathologist will be able to give a diagnosis of the type and grade of your child's brain tumour. This is important as it will help plan your child's treatment.
Oncologists are doctors who specialise in the non-surgical treatment of patients with tumours. Different types of oncologists may be involved in your child's treatment. Sometimes, although they may have a different job title, their role is the same.
Clinical oncologists plan your child's treatment using radiotherapy and/or chemotherapy. They also monitor your child's progress throughout treatment. They will work closely with the neurosurgeon and will co-ordinate any further treatment your child may need. Clinical oncologists who specialise in brain tumours are sometimes called neuro-oncologists.
Medical oncologists diagnose and treat people with malignant (high grade) tumours, mainly using chemotherapy. They can advise on all aspects of treatment, including radiotherapy, but only clinical oncologists can prescribe radiotherapy.
Paediatric oncologists are doctors who specialise in the diagnosis, treatment and follow-up care of children and young adults with tumours. Most tumours affecting children are different to those affecting adults and often respond differently to treatment, so treating children is a separate speciality.
The clinical nurse specialist (sometimes called a neuro-oncology nurse) is your main contact between you and the MDT. They are sometimes called a 'key worker'. They are able to help with any questions or concerns you may have about treatment, or other practical or emotional aspects of living with your child's brain tumour.
If your child needs radiotherapy, the radiographer is the person who actually gives the radiotherapy (radiation treatment) that your child's clinical oncologist prescribes. Radiographers work with other professionals who help plan your child's treatment, including radiotherapists and medical physicists. Whilst your child is receiving radiotherapy, they will see radiographers daily, or as often as your child's treatment plan requires.
Health play specialists use play to help reduce your child's fears and anxiety for treatments and scans. They work with children from birth to 16 years.
A physiotherapist helps with the recovery of your child's movement, balance and muscle strength by using exercises, massage and other treatments, such as ultrasound or heat and cold.
Occupational therapists can suggest aids or equipment to help with day-to-day tasks and activities at home and at school. For example, getting dressed, writing or moving around.
Speech and language therapists will work with your child to help them improve their speech and communication if their tumour affects the area of the brain that is involve with language. They can also help with difficulties relating to swallowing.
Dietitians can help create dietary plans to suit your child's individual nutritional needs and appetite changes that may occur during treatment.
Clinical psychologists can help your child and family work through difficult or stressful issues to alleviate feelings such as anxiety, fear and depression. They could be part of your child's long-term health team - to help them cope with different stages in life following treatment. Or for children who have been given a poor prognosis, a clinical psychologist can support your family to work out and express any thoughts, fears and questions you may have.
A clinical psychiatrist can help with mental health issues, such as anxiety or depression. They are differ from clinical psychologists in that they are medically qualified doctors, so can prescribe medication and certain other treatments.
Educational psychologists can help if your child is having difficulties at nursery/school/college which is affecting their learning.
Social workers can look at the needs of the family, both at home and in hospital. They can provide emotional and practical support, such as helping you with financial concerns, and co-ordinate care between hospital and home.
Although technically not part of the MDT, two types of healthcare professional may have been involved with assessing your child's first symptoms, referring them for more specialist help, and may continue to be involved in your child's care during treatment.
Your child's GP may be the first person you seek medical advice from when your child experiences symptoms or side-effects of any kind - from the tumour itself or from treatment. Your GP will receive updates from the hospital about your child's treatment.
Depending on where it is in the brain, the tumour or its treatment may affect your child's vision - for example, by causing loss of their peripheral (outer) field of vision. Your optometrist may be able to provide them with glasses, visual aids and information about organisations that can help your child adjust to changes in their vision.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
Phone lines open Mon-Fri, 09:00-17:00
You can also join our active online community on Facebook - find out more about our groups.