The Brainy Bag is available to all children diagnosed with a brain tumour.
Each bag is slightly different as it includes items appropriate to the age of the child.
Children who have, or had, a brain tumour may develop learning difficulties at some time. The difficulties can be due to a number of factors, such as time out from school or the side-effects of the tumour and its treatment. They may need some extra help.
Unfortunately many children are likely to be affected to some extent. However:
Generally speaking, the younger your child is when they are diagnosed (and treated), the more likely they are to develop learning difficulties, particularly if they are under three years.
This is because their brain is still growing and developing, and so is more susceptible to being affected by treatments. This is particularly the case with the radiation used in radiotherapy, and is why radiotherapy is often not included in treatment for the under three's. Careful consideration is also given for children under five years.
Sometimes learning difficulties may not develop, or may not become obvious, until a few months or even years later. This is called a 'delayed or late effect'.
Each child is different and much will depend on
where their tumour is in the brain. This is because different parts of the brain control different parts of learning.
The age of your child and the size of their tumour may also affect their type of learning difficulty.
Common learning difficulties in people with brain tumours include issues with:
All these can be made worse by fatigue (extreme tiredness) - another common issue for people who have or had a brain tumour.
This is understandably frustrating for your child, and may cause anxiety and stress. Time away from their lessons and friends can affect them emotionally, and negatively impact their learning.
As a result, they may need support to cope with the emotional impacts of having a learning difficulty before the difficulty itself can be addressed.
It is important to remember that having learning difficulties does not mean that your child is now less intelligent, but rather that they have difficulty recalling or processing information.
There are various ways your child's learning difficulties may come to light. These may include your own observations as a parent or carer, or from teacher observations and reports.
Some treatment centres offer 'neuropsychological testing' before and after treatment to check for any early signs of learning difficulties. Speak to your child's health team about this.
It may take some time for a learning difficulty to be identified if it is subtle. It is also possible that a learning difficulty may become more pronounced as your child grows and attempts more complex tasks.
There are several sources of support to help your child with their social and educational development.
To help give parents and teachers (and, where appropriate, the young person themselves) the information, knowledge and confidence to work together to overcome these issues, The Brain Tumour Charity has created a set of practical, downloadable education resources.
The Special Educational Needs Co-ordinator (SENCO) for your child's school should be involved as soon as your child goes back to school. Their role is to make sure that any support your child may need is put in place before or when they need it. They can co-ordinate the support for your child and involve other professionals, such as educational psychologists.
Although there is a lot of support available for children with learning difficulties, sometimes it is difficult for teachers/tutors (as well as parents) to know what is available, what your child is entitled to and where to find it.
Sometimes lack of awareness of rarer health conditions, such as brain tumours, and their effects on learning ability adds to the problem. In addition, these problems may only become evident many years after treatment, which other professionals may not realise.
It is also easy for communication between busy teachers/tutors, healthcare professionals and parents to slip. As a result parents may have to be proactive in making sure their child gets the support they need.
You can use our education resources with your child's teachers to reduce the negative impact that brain tumours may have on your child's educational life. They include effective support strategies and plans, as well as legal rights and responsibilities.
Educational psychologists help children or young people who are having problems (learning, social and emotional) that are getting in the way of their learning and of taking part in school and other activities.
They will watch and talk to your child and give them various tests. From this they work out what difficulties your child is having and work with you, your child and the teachers to put measures in place to support your child's learning.
This could include one-to-one support in certain subjects, advising teachers on teaching styles and techniques that may help your child, or referring on to another health professional, such as a speech and language therapist.
They can also give in-house training to teachers on issues such as behaviour and stress management.
In addition, they can write formal reports and attend case conferences to help put in place more formal support strategies. This includes Education, Health and Care Plans (EHCPs) or Statements of SEN (Special Educational Needs).
Different schools have different arrangements with the Educational Psychology Service in their area and the waiting time for an appointment with a local authority EP can be long. It is possible to employ a private EP, but their costs can vary enormously, so, if you choose to do this, it is worth getting a few quotes.
Speak to your child's school about the educational psychology services available in your area and how to access them.
Much of the additional support your child may need can usually be provided through the normal learning and teaching that takes place in the class. Using the various strategies listed in our education resources can help.
However, occasionally extra support may be needed - for example, if your child has more complex needs. This is where various statements or plans comes in - EHCP or SEN Statement in England & Wales; Co-ordinated Support Plan (CSP) in Scotland; or Statement of SEN in Northern Ireland.
Education, Health and Care Plans (EHCPs) have replaced Statements of Special Educational Needs (SEN) in England and Wales. Those already on SEN statements are gradually being transferred to EHCPs.
Either you, your child's teacher or someone in your child's health team can request an assessment for a plan from your local authority (LA), council or Education Authority (EA), if you feel this is something your child needs.
You can apply for a plan for physical/medical needs as well as cognitive/learning needs.
In England and Wales, a young person can also request an assessment themselves if they're aged 16 to 25. A request can also be made by anyone who thinks an assessment may be necessary e.g. doctors, health visitors and family friends.
The LA/council/EA has a limited amount of time to let you know if they will carry out an assessment. (The time varies according to which nation in the UK you live in).
Requesting an assessment for an EHCP, CSP or statement does not automatically mean that you will get one. However, if the LA/council/ EA says that they will not provide one, they will explain in writing why not and how your child will be supported inside or outside of school.
If they do agree to carry out an assessment, they will ask for evidence from various professionals, such as your child's healthcare team and teachers. This will be used to decide whether they will create a plan/ statement for your child.
The LA/council/EA has to tell you within a limited time if a plan or statement is going to be made. Again the time will depend on which nation you live in, within the UK.
It is recommended that you let your LA/council/EA know as soon as possible, if you wish to request an assessment for an EHCP, CSP or statement of SEN, as the process can take some time.
You have the right of appeal if a plan is refused. There may also be other assessment plans, such as an Early Help Assessment, that may be able to identify your child's needs and the support they need.
If an EHCP is made, it is a legally binding document -the support laid out in the plan must be provided. If needed, the plan stays with your child until they are 25 years old, but is reviewed regularly and amended, if required.
If your child has additional support needs, you can also request a specific assessment at any time, such as an educational, psychological, physical or medical assessment.
For older children taking their GCSEs or A-levels/Highers, it may be possible to get extra time and/or other help with their exams, such as breaks during the exam or help from a scribe. It is best to apply for this early, but discuss the timing of the application with the SENCO or Exams Officer at your child's school/college /exam centre, as if you apply too early, the application may run out-of-date.
For more information, see the Joint Council for Qualifications - Access Arrangements and Reasonable Adjustments.
It can help if you and your child talk about how they are getting on and anything they are struggling with or that concerns them. This can help relieve stress and anxiety for your child. It also gives you the chance to find out any difficulties your child is having that you are unaware of, which can help you find appropriate support for them.
Don't be afraid to seek support from your child's health team – they will be able to direct you to appropriate support for specific issues. Most teachers are also very happy to provide any extra support for your child that they can.
There are also a range of professionals who can provide emotional support which can include:
Our Children and Families Service offers a range of support to children and families living with a brain tumour diagnosis.
You may also wish to join our friendly and supportive closed Facebook groups where you can meet others who understand what you're going through.
Our education resources are designed to provide help and support to a child, their parents and teachers. They can help by giving further information on what to expect and what help is available.
While The Brain Tumour Charity cannot recommend any specific organisations or resources, you may find the following helpful:
(Though some are written by charities not related to brain tumours, they still include useful information.)
Download our information about learning difficulties and brain tumours in children in a printable format.
Download our information about learning difficulties and brain tumours in children in a printable format. Clear print version, designed to RNIB guidelines.
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.