Update 17; Further request for support from the charities
We have written to the charities again. We’ve listed them below. In our recent meeting with NHSE it was suggested by NHSE that the charities could write to FASP to indicate support for view retention (if the charities felt it appropriate to do so).
The following are notable extracts from our 3 page letter;
Please may we seek your support. We’d like you to consider sending an open letter to NHS England Fetal Anomaly Screening Programme. We’d also like you to reassess your continued reluctance to openly comment on this issue.
In addition to NICOR openly contradicting FASP, we have been approached privately by numerous consultants, nurses, sonographers and cardiologists. Everyone is supportive of this but nobody will openly comment within the NHS.
Despite being advised by NHSE that we no longer need to pursue this, as they would take over, we have just finished submitting FOI requests to all the acute hospital trusts in England to clarify their view retention protocol. We have now submitted 200 requests in total. Responses are still being returned but we are very surprised at just how many trusts are actually retaining views.
We have written to the Secretary of State for Health and Social Care. We have written to our local MP and local councillors. We have written to the CEO of our local hospital. We’ve written to FASP and each of the heart related charities. We’ve written to CHD networks. We’ve reached 55,000 people in our petition. We will continue lobbying for change.
Please may we call on you to write an open letter to FASP. There is widespread support to retain fetal cardiac views. Still images would be a step forward but we feel it’s reasonable to expect video clips are retained as this is the only time our hearts are ever routinely scanned. Clips are considered the gold standard when assessing a rapidly moving 3D heart structure.
We will continue to push for video clips to ensure such “dynamic”heart studies “reflect the complete assessment” as described by FASP. We cannot understand how, in 2024, data storage costs are influencing this debate. Surely input by the charities may be able to influence external funding or external technical assistance for such data storage. We’d have quite happily taken a £2 USB stick to our appointment if we were aware of our local screening protocol and had been given this option.
We will publish which trusts do and which don’t retain views on the above petition when all responses are received.
We are aware the charities have been able to show open support for the pulse oximetry issue and have advocated for these devices widely on social media. We would like to see a similar commitment when it comes to fetal cardiac view retention please. We understand many of the charities do have suitably medically qualified trustees on their boards. We feel this expertise does qualify and enable the charities to openly comment on this issue.
We do not feel this issue is the sole responsibility of one charity only that is concerned with antenatal detection rates. We feel all heart related and children’s charities have an equal responsibility to break cover and try to influence this change sooner. Currently, we understand it will take years for any review to be completed and for the guidelines to actually be changed.
Please may we have a response. Please would it be possible to help us understand why your charity is not able to openly support or comment on this issue if this is the case.
This has been sent to;
Children’s Heart Federation
Little Hearts Matter
Heart Line
Tiny Tickers
British Heart Foundation
Children’s Heart Surgery Fund
Heart Heroes
ECHO – Evelina Children’s Heart Organisation
Children’s Heart Association
Children’s Heart Unit Fund