We wrote to the UK National Screening Committee earlier this month. They responded within 24 hours;
"Whilst the UK National Screening Committee advises on whether a condition should be screened for, it does not have responsibility for the operational delivery of screening (including provision of programme guidance) – this rests with NHS England. Best wishes to you and to Molly".
We'd already written to NHS England on 4th March 2024 seeking clarity over the justification for the FASP guidance. Repeated extensions have since been requested to provide a response. Initially we were advised 6 weeks. It's now suggested it may take over 6 months to reply. We await a response.
We recently wrote to the Secretary of State for Health and Social Care Victoria Atkins. A response is awaited.
We have recently submitted a Freedom of Information request to NHS England to establish which trusts in England do and don't retain fetal cardiac views. We've been advised to contact the Integrated Care Boards in each ICS.
We've now submitted FOI requests to all ICS / ICB's in England to establish who is retaining views. We intend to cross reference this data with detection rate statistics to establish if there is any correlation.
It appears there is no record or central co-ordination of who is retaining views and the possible impact this is having. Or if there is, nobody is approaching us to tell us.
We've been told by other sources there are "National workstreams" underway and the CHD clinical review group are assessing various issues concerning screening and detection rates - suggesting everything is in hand.
We feel that if these issues and the work of the "national workstreams" / CRG could be explained in more detail or promoted publicly, this would perhaps offer some reassurance to affected families. It may also go some way to restoring families' confidence in processes and professionals.
We are simply trying to understand what happened to us as a family and why. We've struggled to get answers from anyone or anywhere. Ultimately we've been reliant on our own research, formal correspondence with our trust, subject access requests and FOI requests to get this far. We feel there is a lack of transparency and lack of meaningful explanation to families that are affected.