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An Adolescent Support Day for teenagers with NF1

22 October 2019

An Adolescent Support Day for teenagers with NF1

Bridie Windsor is a Deputy Clinical Nurse Specialist based at the Neurofibromatosis Centre at Guy’s Hospital in London, where she has organised an Adolescent Support Day for teenagers with NF1.

The NF1 Teenager Day is dedicated to the teenagers who attend the National Neurofibromatosis Type 1 clinic at Guy’s and St Thomas’ NHS Foundation Trust. Our team has a wide variety of experience and disciplines, including specialist doctors, nurses, psychologists, physiotherapist and orthoptists. I was privileged to be able to organise this support day for our young people to improve their understanding and experience of healthcare. Transitioning from the paediatric to adult services is a gradual process, as such we invited teenagers between 13 to 17 years old to participate in our day.

This year on the 21st of October we had 15 teenagers attend the Teenager Day where I was able to present what the adult service looks like, school and university support options and information on other supports, such as Ella’s Editorial on Nerve Tumours UK. Dr Natalie Smith, our Clinical Psychologist, provided information on stress and coping and how the psychology team can help. We were very privileged to have Adam Jacobs, who runs Ultra-Marathons, to come along and give an inspirational talk.

We also dedicated time for a discussion in a safe space to answer any questions. Finally to finish the day we were very lucky to go to the MediCinema at Guy’s Hospital to see Dumbo.

Not only is the Teenager Day a chance to ask our team any questions, but creates a space to meet other young people with the same condition, who might be going through the same issues. That is the main goal of the day, to provide support for the teenagers in our service to know they aren’t alone. We want all young people to feel comfortable to manage their own healthcare when they go into the adult service.

We look forward to holding future support days for both NF1 and NF2.

"Not only is the Teenager Day a chance to ask our team any questions, but creates a space to meet other young people with the same condition, who might be going through the same issues."

– Bridie

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