News

2021 TOFS Awareness Week: 15 – 21 March

Published: Mon, 1st March 2021, 09:40:00 AM

The 2021 TOFS Awareness Week is nearly upon us and we hope to use the week to spread the word about OA/TOF!  This year’s Awareness Week is set to coincide with International Swallowing Awareness Day on Wednesday 17 March and the NHS Nutrition and Hydration Week runs from 15 - 21 March. 

This year, more than ever, we feel that it is important to increase awareness of OA/TOF and the challenges that may come with it, including the TOF cough – which is a particularly difficult side effect to manage in the current climate.  We also recognise the immense pressure that living with OA/TOF (as a parent/relative or Adult TOF) may have on your mental health, especially due to the added impact of the pandemic.  Parents have lost the support of face-to-face health services such as speech and language therapists, dieticians and doctors.  Many children and adults born with OA/TOF have long-term respiratory problems and have been shielding since March and for those not shielding, issues like school and work are a cause for worry.  As such we have produced a document containing links for support services that you may find beneficial (please scroll down to the resources section to download).

We'd also like to take this opportunity to thank all those who submitted videos for consideration in our 2021 Awareness Week 'TOF Warriors' video - watch this space the finished product!

Join us for a Temple Spa pamper evening

We have an exciting opportunity to take part in a virtual ‘pampering’ event, kindly led by a consultant from Temple Spa, to take place on the Friday evening of TOFS Awareness week (Friday 19 March).  The Zoom event is open to the first 50 members to register their interest, and participants will be sent a sample-size goodie pack to use during the session!  This is a great way to unwind, while supporting TOFS for Awareness Week by giving a suggested donation of just £10!  It also makes a great treat for Mother's day!  Watch this space for booking details.

Save the date

Don't forget we have an ongoing program of online support events to help members of the TOFS charity, led by some of our fantastic volunteer TOFS Local Contacts (TLCs). Our next event is set to take place on Tuesday 11 May at 8pm with Tracey Fish and husband Mark, and Becky Panting and husband Dave on the subject of 'Supporting dads and partners too'.  This will be followed by a session which will cover 'Oral aversion and sharing tips on how to encourage your child to eat', and will be led by Kay Leech and Cara Macdonald on Tuesday 06 July. Watch our Talk with TLCs video here.  We would also like to encourage you to help us spread the word by sharing your stories on social media (don’t forget to tag us - #mentalhealthsupportforOATOF). 

 

Let's target GPs

'After being discharged this book has helped us to feel more informed and more in control...there are other parts that have really helped me understand the ‘why’. It’s a great mix of medical and personal.' 

We know how important the TOF Book is to our members and we'd love every GP to have a copy - our aim is that a pdf version of The TOF Book will be circulated to all GPs! We are happy to send out a pdf version of the TOF book to GPs, please contact your local GP and ask them for permission to share the book with them. 

 

New leaflet available for Awareness Week

We're really excited to tell you about a leaflet which will be mad eavailable for this year's awareness week. The 'Introducing Solids, following repair for OA/TOF' leaflet, written by Paediatric Dietitian (and TOF parent) Julia Faulkner, aims to give guidance to parents of young children born with OA/TOF as they navigate the early stages of feeding following initial OA/TOF repair.  We hope you will find this new resource extremely helpful, there will be a copy available to download soon or place your order now for your hard copy.

How you can get involved

  • Share your story on social media and don’t forget to use the hashtag #mentalhealthsupportforOATOF.  
  • Share your OA/TOF story with local press and radio. The 2021 Awareness Week Press Release will help!
  • Add the TOFS facebook frame to your profile picture on social media.
  • Organise a fundraising activity and raise money for TOFS!  You can find information about fundraising here, or set up a Facebook fundraiser.
  • Contact your GP and ask them if they’re happy to receive a pdf version of the TOF book, we just need their permission to send a pdf via email.
  • Send an email to your MP using our template (takes less than a minute) to make them aware of OA/TOF Awareness week and the lack of transition for adult TOFs.   You can find out who your MP, MSP, AM or MLA is, and all their contact details (including parliamentary and constituency offices) from the websites below:                               
For MSPs (Scotland): parliament.scot/msps.aspx 
For MLAs (Northern Ireland): niassembly.gov.uk/your-mlas/ 
You can find out who your local councillor is by going straight to your Council website. Alternatively, you can use this website: gov.uk/find-your-local-councillors unless you live in Northern Ireland, in which case start here: nidirect.gov.uk/services/ online-register-local-councillors  You can also find, and write to, any of your elected representatives through: writetothem.com/

 

Awareness Week resources

We have a range of Awareness Week resources that you can download and print at home:

Mental Health support poster

About OA/TOF leaflet

Introducing Solids, following repair for OA/TOF leaflet - our brand new leaflet for 2021 Awareness Week (link will follow soon)

 

You may also wish to request awareness resources by using our order form.

‘Cute not Contagious’ bib

‘Lifelong Follow-up for OA/TOF’ wristband

About OA/TOF leaflet

'Introducing Solids, following repair for OA/TOF' leaflet

Please note, whilst we're working hard to fulfil requests, items are in high demand so please bear with us whilst we arrange and dispatch your items. 

© Tracheo-Oesophageal Fistula Support
TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
Website by Altido

Our team at TOFS is working tirelessly to bring you the latest advice regarding Coronavirus. The support and advice we provide are only possible thanks to kind donations from people like you. If you're able, please consider donating now.