We've obtained our medical records through subject access requests (SAR’s).
We’ve formally complained to our trust (twice).
We’ve formally complained to NHSE concerning the FASP guidelines.
We’ve written to NICOR, NCARDRS and UKNSC.
We’ve written to all the CHD network clinical leads and managers.
We’ve approached all the CHD charities (twice) seeking their support.
We’ve written to our local councillors. We’ve written to our local MP. We’ve written to both the Labour and Conservative Secretary of State for Health and Social Care.
We’ve written to numerous investigative journalists and production companies.
We’ve written to some leading legal figures.
We’ve written to the Care Quality Commission (CQC - the NHS regulator).
We’ve physically distributed fliers and posters.
We’ve secured contact with the CHD CRG resulting in their open support for a review of FASP guidelines.
We’ve submitted over 250 individual FOI requests to NHSE, all ICB’s and all acute trusts in England. We’ve identified trust view retention practices in England which was not previously known. We’ve demonstrated the considerable inconsistency.
We’ve highlighted all the more recent clinical guidance that is not compatible with FASP.
We have started the online petition. It has currently been viewed over 75,000 times, shared over 1,600 times and has over 3,300 signatures. 54 promoters have paid over £600 to extend the reach of this petition. We’ve frequently distributed it in over 40 online pregnancy, parenting and CHD groups.
We’ve created social media accounts on multiple platforms to circulate the petition widely.
We will write to the Parliamentary and Health Service Ombudsman (PHSO) when all responses are finally received.
Many families are being failed each year like us. It has taken us 12 months to find this information out and to get this far. We would like consistency between trusts. There is a postcode lottery. Keeping records of our scans is a common sense starting point to improve antenatal screening practices and detection rates.