News

TOFS becomes the first ever patient support group to make a presentation to the annual conference of the British Association of Peadiatric Surgeons

Published: Wed, 29th July 2015, 10:46:00 PM
A FIRST for TOFS (and EAT!) TOFS have achieved the destinction of becoming the first ever patient support group to be invited to make a presentation at the annual conference of British Association of Paediatric surgeons TOFS trustee Graham Slater – wearing his hat as Chairman of EAT – scored a coup with a vital (to TOFs) group of surgeons recently. It was the first time that any patient support group had presented at a conference of BAPS (British Association of Paediatric Surgeons). Graham had been invited to present the main findings of  EAT’s 2014 Worldwide survey of TOF/OA patients.(**) by BAPS president David Burge, who treats a number of TOF babies at Southampton. TOFS also had a small stand in the exhibition area, where we reminded the surgeons that we are the UK support group for TOF/OA . We also talked about our work with the swallowing experts (the Speech and Language therapists).   Helen Marks (lead Speech and Language Therapist at Bristol Children's Hospital) attended BAPS with TOFS Trustees John Pearce and Graham Slater to chat to interested surgeons. We distributed our write-up, based on a recent Chew article, the findings of the TOFS 2014 survey of your experiences of SALT treatment for TOF children.  She also talked about the SALT trial going on with TOF/OA babies at Bristol.   This is just one example of  what TOFS is doing behind the scenes to get various groups of health care professionals to take more notice of TOF/OA and ultimately improve the lot of TOF/OA people       Note The worldwide survey which Graham presented was organised by EAT,  the international federation of TOF/OA support groups of which TOFS is a founder member. In 2014, the survey was sent to support group members in many countries – including TOFS members - and it got nearly 1000 responses. The SALT experiences survey was organised by TOFS, and sent to all TOFS members – we got about 170 responses. The documents showing the findings of both surveys are available here. Neither TOFS nor EAT are associated with any surveys of TOF people going on at present.  But we do expect to undertake some more surveys in Autumn 2015  

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