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Supporting children, young adults and their families up to the age of 30

Supporting children, young adults and their families up to the age of 30

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.

CTT is pleased to be working in partnership with www.rareminds.org to offer Free, Confidential Counselling for CTT patients aged 18-30, parents and other family members aged 18+ or who care for a child with NF1 aged up to 30 who live in the UK.
Up to 12 sessions can be provided either via Zoom, or by telephone. Both evening and daytime appointments are available.
All of the Rare Minds Counselling team are trained and experienced psychotherapists who have undertaken additional training in Counselling for Rare Diseases.
As living with NF1 happens within the context of your everyday life, it’s inevitable that the ‘ups and downs’ of both impact on each other. You can talk to our counsellors about anything that you are struggling with. This might include:
  • The impact on your family relationships
  • Feeling different, lonely or isolated
  • Your relationship with health care professionals, or navigating systems
  • Dealing with difficult, unpredictable or increasing symptoms
  • Learning to become an ‘NF1 expert’
  • Coping with unpleasant tests, surgery or treatment
  • Worries about the future
  • The psychological and practical implications of inheritance
It’s not always straightforward to know why you feel as you do. CTT Counsellors provide a safe, confidential relationship to work through difficult thoughts or feelings, think about options that are open to you, and explore new ways of approaching your difficulties.
If you would like to arrange an Initial Consultation, please contact Lead Counsellor David via email david@rareminds.org.uk marking the subject ‘CTT enquiry’.

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*

Part presentation, part interactive workshop, this small supportive group facilitated by Rareminds offers a friendly, informal opportunity to discuss with others who share a similar experience, how you felt (and feel) about the impact of NF1 on your life and relationships. It is a space to work through the emotional impact of receiving a diagnosis.

Dealing with diagnosis for parents/carers of a child with a family history of NF1*

Part presentation, part interactive workshop, this small supportive group facilitated by Rareminds offers a friendly, informal opportunity to discuss with others who share a similar experience, how you felt (and feel) about the impact of NF1 on your life and relationships. It is a space to work through the emotional impact of receiving a diagnosis.

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.

*Subject to change as we regular monitor and evaluate workshops to best support our members.