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OA/TOF information afternoon for TOFS 2020 Awareness week at GOSH!

Published: Mon, 27th January 2020, 11:59:00 AM

Caroline Gainsbury, Surgical Complex Care CNS

Friday 28 February 1pm-5pm

Thank you to all GOSH OA/TOF patients, families and carers who attended this event.

In celebration of TOFS 2020 Awareness week please come along to an informal OA/TOF information afternoon at GOSH.

Meet other OA/TOF families.
In attendance will be nurse specialists, dietitians, psychologists and speech and language therapists, all of whom will be glad to discuss any OA/TOF related issues and answer your questions.

Alex Stewart, Specialist Speech and Language Therapist at GOSH

Throughout the day there will be: refresher BLS sessions, diet/weaning advice and schools/nursery support.

For further information, or if you are interested in attending, please email: Surgical.OutreachTeam@gosh.nhs.uk

Please note that this event is strictly for patients of Great Ormond Street Hospital only. Bookings may only be made via the email address above.

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To all at TOFS, just a really big THANK YOU for being there. All I wanted was just for someone to listen and understand and you were there for me.

Jo Wright, parent of a child born with OA/TOF

We wanted to thank you again for all the support you have given us over the phone and through your newsletter, website and online forum. We have found TOFS an invaluable resource and spread the word wherever we can about the great work you do.

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The TOFS support group does exactly what it says on the tin! It supports. And that’s a very reassuring feeling - talking to people who have been there. You guys do a wonderful job.

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During my working life as a paediatric surgeon I learned as much, if not more about TOF from parents and from TOFS meetings as I did from learned journals.

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Our bumpy ride has been so much easier with TOFS; just listening to other people’s experiences and knowing someone is there.

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Useful Links

Hospital Travel Cost

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NHS 111

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Adult TOF Facebook Group (endorsed by TOFS)

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Contact - for families with disabled children

UK charity which signposts parents to relevant support groups. CaF also provides resources on a range of issues (including benefits and rights) and offers the support of a Welfare Rights Officer. Directory for specific conditions, rare disorders and UK Family Support Groups.