Childhood Tumour Trust
Providing support
CTT counselling service
Please be aware that the CTT Counselling Service is not able to offer emergency support in a crisis. If you are concerned that you may not be able to keep yourself (or another person) safe, please contact your GP, or dial NHS 111 for advice. If your life is imminently at risk, call 999 or go to your hospital A&E.
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The impact on your family relationships
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Feeling different, lonely or isolated
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Your relationship with health care professionals, or navigating systems
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Dealing with difficult, unpredictable or increasing symptoms
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Learning to become an ‘NF1 expert’
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Coping with unpleasant tests, surgery or treatment
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Worries about the future
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The psychological and practical implications of inheritance
Please be aware that the CTT Counselling Service is not able to offer emergency support in a crisis. If you are concerned that you may not be able to keep yourself (or another person) safe, please contact your GP, or dial NHS 111 for advice. If your life is imminently at risk, call 999 or go to your hospital A&E.
CTT workshops
Dealing with diagnosis for parents/carers of a child with no family history of NF1*
Dealing with diagnosis for parents/carers of a child with a family history of NF1*
Talking with your child about NF1*
Talking with your child about NF1 may not always feel easy. They may ask questions at difficult times such as when you are in a rush, or before bed. How much – and what – to say, and managing your own feelings about it all too, can sometimes feel a lot to manage.
This supportive small group workshop offers the opportunity to meet with other parents to share experiences of talking with your child about NF1, and offers some guidance and principles that can help in talking with your child about living with NF1, whatever their age.
Preparing for transition*
The move from children’s to adult services can be challenging for both parents and young people in different ways. Supporting your young person to become more independent with the care around their condition can feel a nerve-wracking task, especially when combined with the ‘ups and downs’ of the teenage years, or if there are developmental or cognitive issues involved too.
The move from children’s to adult services can be challenging for both parents and young people in different ways. Supporting your young person to become more This interactive workshop provides an informal relaxed space to share thoughts, feelings and fears about this process with other parents.
Stronger Together – an 8 week group programme
When your child is diagnosed with NF1 it can be frightening, demanding, stressful and lonely.
‘Stronger Together’ provides a supportive, confidential space to share experiences, the ups and downs, and to feel less on your own with some of the unique demands of your particular circumstances.
The sessions will be facilitated by Rareminds, and offer practical and emotional support for your well-being alongside the opportunity to create trusted bonds with other group members.
‘Stronger Together’ is an unstructured group. Topics discussed will vary, depending on group members and their particular needs.
Resources
What is NF1?
My Child Has Been Diagnosed with NF1 – What Now?
Insert for the Red RCPCH Child Development Book
A concise guide tailored for you to include in the Royal College of Paediatrics and Child Health Red Book, this insert provides vital information for families and healthcare professionals tracking development milestones and care needs for children with NF1.
Patches and the Very Special Diagnosis
Patches and the MRI Adventure
An engaging story where Patches takes children on a journey to prepare for an MRI, explaining the process in a friendly way to help ease any worries. Alongside the story, we also offer a recording of an MRI machine’s sounds, which can be used in the background – such as during bedtime reading—to help children get accustomed to the sounds without focusing directly on them. While this recording may not exactly match the sounds each child will hear, it offers a useful introduction to ease the experience.
Patches and the Time Machine
NF1 Review checklists
These checklists for children and adults with NF1 are invaluable tools for tracking important wellness checks over time.
Download adult checklist Download child checklist