News

TOFS 2020 Awareness week is fast approaching!

Published: Mon, 10th February 2020, 09:00:00 AM

What is TOFS 2020 Awareness week?

The TOFS 2020 Awareness week will run from 24 February to 1st March 2020.  This year we have planned our Awareness activity to coincide with the national event, Rare Disease Day, on Saturday 29 February.  We're tremendously excited to use this opportunity to spread the word about oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF). 

One of the key aims here at TOFS is to increase public understanding and awareness of OA and TOF.  Especially amongst medics who may not be aware that these congenital conditions exist, nor of their implications for babies, children and, in some cases, adults.  Whilst we have come a long way since our first-ever Awareness week some years ago, there remains a significant challenge in spreading the word and we really need your help.

Lifelong follow-up for OA/TOF

This year's theme is #lifelongfollowupforOATOF.  Our aim is to spread this message far and wide to make a significant impact on people's understanding and perception of these congenital conditions. 

We know that some TOF children go home and have few problems following surgery. Other children experience feeding difficulties and chest problems, and some may require further surgery.  Problems generally get less with time - some issues disappear and children learn to cope with any restrictions.  However, some feeding problems remain, for example, eating slowly and needing to drink with meals to help food pass down. Reflux can remain an issue throughout life and quite often children need to stay on anti-reflux medicine long term.

Some Adult TOFs have significant issues in adulthood, and experience a frustrating struggle to get expert care. TOFS advocates lifelong follow-up for OA patients.  More awareness amongst health professionals in adult care is essential. Let's start with informing GPs!  You can help by distributing the new TOFS 'About OA, TOF and VACTERL' leaflet to GP surgeries in your area.

It's not just amongst those professionals in adult care that we need to raise awareness.  We'd love to know that staff in the neo-natal units are not only aware of OA and TOF, but know about the TOFS support group too!  We're sending copies of our new leaflet around all the centres that do the repair.  Please ask if they've received them, and you can request copies to drop off at your local hospital. These leaflets will be available from TOFS from 13 February, just email info@tofs.org.uk if you can help us with distribution. 

We'd love you to get involved and deliver these messages to those that matter - neo-natal units, GPs and amongst the general population.  If OA and TOF were better known, the characteristic TOF cough might come as less of a surprise!  Adult TOFs who are experiencing problems might find it easier to get referrals from their GP.  And parents of new-borns might find support when they need it most, at that often bewildering time of diagnosis.  

Please help us distribute our 'About OA, TOF and VACTERL' leaflets into hospitals and GP surgeries!

How YOU can help!

  • Order the 2020 Awareness week pack from TOFS!  This contains a press release for you to use in local press, along with two copies of our new 'About OA. TOF and VACTERL' leaflet - one for your GP and one for your local hospital.  
  • Visit your local hospital and/or GP and deliver a copy of our re-launched leaflet, About OA, TOF and VACTERL.  View our online copy here and request a hard copy by emailing the TOFS office, at info@tofs.org.uk.  (Two leaflets will be sent out as part of Awareness week pack if you request that.  If you need any further leaflets for your own use, please ask.)
  • Order your FREE 'lifelongfollowup' wristband from TOFS.  To order, just email info@tofs.org.uk.  Take a photograph of you wearing your wristband and upload to social media. Don't forget to use the hashtags #lifelongfollowupforOATOF and #TOFSawareness2020.  
  • Share your TOF story with local press and radio. The 2020 Awareness Week Press Release will help!
  • Visit the TOFS Facebook group and add the TOFS facebook frame to your profile picture on social media
  • Organise a Tea for TOFS!  Here's some invites to raise awareness amongst friends and neighbours.  You only need to invite a couple of people and it will be a couple of additional people who know about OA and TOF! 
  • Organise a fundraising activity and raise money for TOFS!  Our fundraising guide is available here.  Please feel free to tell us about any events or fundraisers that you have organised and we'll share them on our events page or on social media.
  • 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 MPs: findyourmp.parliament.uk 
    For MSPs (Scotland): parliament.scot/msps.aspx 
    For AMs (Wales): assembly.wales/en/memhome/Pages/memhome.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/
  • Host an information stand at your local library, hospital, pharmacy, supermarket or gym.  Email us and we will arrange to send some resources.
  • Order a 'I'm cute, not contagious!' awareness-raising bib for your little one.  The message is loud and clear, and the bib is edged in pink or blue.  We hope they will be useful in situations that attract unwanted attention from others!  To order, please email info@tofs.org.uk - but note, you will not receive the bib until Awareness week itself.  The bibs are white and edged in pink and blue so don't forget to tell us which colour you'd like! (Note, bibs are limited to one bib per member whilst stocks last.) 

Don't forget these awareness week events:

Friday 28 February, 1pm - 5pm, OA/TOF information afternoon at GOSH, full details here and to book please email: Surgical.OutreachTeam@gosh.nhs.uk 

Saturday 29 February, 11am - 1pm, Family Information and Support session in Sheffield!  Full details and book here.

© 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.
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