TOFS, the charity supporting those born with Oesophageal Atresia (OA) and Tracheo-Oesophageal Fistula (TOF), have today released a position paper aimed at ensuring consistent lifelong multi-disciplinary care for people born with OA regardless of their age, or where they live in the UK.
The paper, co-authored by Graham Slater, TOFS’ trustee and Special Patient Advisor to the international federation of OA patient support groups (EAT), and Julia Faulkner, TOFS’ Medical Advisory Group member and paediatric dietitian, includes recommendations for:
- co-ordinated multi-disciplinary care at a small number of OA expert centres
- a lifelong care pathway for OA patients
- regional centres for adult care, linked to the paediatric centres of excellence
- a long-term Core Outcome Set and a lifetime Registry for OA
- a comprehensive and coordinated transition programme into adult care
This paper came about partly at the suggestion of the TOFS Medical Advisory Group (a multi-disciplinary group of leading clinicians).
Prominent surgeon Mr Matthew Jones had given a thought-provoking presentation at the TOFS 2019 conference, and the recent publication of NHS England’s GIRFT (“Getting it right first time”) Paediatric Surgery Report means that this TOFS paper is very timely.
Diane Stephens, Chief Executive Officer, TOFS, said, “The current system has led to considerable variability in the paediatric care of those born with OA. The level of support and care received is dependent on where patients are born. A specialist multi-disciplinary approach is the way forward.
We believe that a major opportunity now exists to take a significant step forward in implementing a coherent care pathway for OA patients deployed at a reduced number of ‘expert surgical centres’ – each with a ‘critical mass’ caseload which can deliver sustainability of surgery, leading to improved outcomes by increasingly ‘Getting It Right First Time’.”