TOFS are calling for consistent, lifelong multi-disciplinary care for people born with OA regardless of their age, or where they live in the UK and you can help.
Download our suggested letter or copy and amend the text the below to send to your MP, MSP, AM or MLA to highlight our cause.
Template letter for lobbying purposes: Please amend and insert details where shown.
[Insert date]
[Insert your contact information]
Dear [insert name of MP, MSP, AM or MLA]
Please help. We need to see changes of how OA/TOF is treated in the NHS.
I am one of your constituents and the parent [grandparent/relative/carer] of a child, Adult TOF, [delete as appropriate] born with oesophageal atresia/tracheo-oesophageal atresia (OA/TOF). I write to you on behalf of the UK charity TOFS, that supports those born with OA/TOF. These are rare congenital conditions, that occur in 1:3500 births.
Once regarded as solely paediatric concerns, it is now widely recognised that some OA/TOF patients continue to have significant health issues in adulthood. These patients report a frustrating lack of awareness of their ongoing issues amongst the medical community generally. This is acknowledged in the current ESPGHAN guidelines that recommend regular monitoring to check for reflux in patients born with the condition(s).
In late 2021, TOFS published a paper, ‘Towards a holistic model for the treatment of those born with Oesophageal Atresia (OA) from diagnosis to transition and adult care’ which puts forward several recommendations that include:
• 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 co-ordinated 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. You may read it here:
https://tofs.org.uk/paper
I would be most grateful if you could raise these issues with your parliamentary colleagues and help us achieve our aims.
I look forward to your response.
Yours sincerely
[insert name]
For further information about OA/TOF and TOFS, visit www.tofs.org.uk
TOFS is a registered charity, no 327735
