Please may we ask you spare 10 minutes to read and share the below if possible. It may help your families or friends.
Hospitals are doing different things at the 20 week anomaly scan. We suspect around half of hospitals are not capturing and retaining views of the fetal heart.
Our daughter's Congenital Heart Defect diagnosis was missed. It wasn't diagnosed until she was 10 months old. We feel there were some missed opportunities. We later learnt her fetal cardiac views weren't retained.
There is significant variation in regional detection rates of CHD. Hospitals are setting their own local protocol due to non-prescriptive national NHSE FASP guidance. Where you live will determine what is identified and what is recorded at your 20 week scan. Detection rates fluctuate massively throughout the UK.
We have secured meetings with leading NHSE professionals. We are currently collating over 200 FOI requests that have been submitted to all the acute hospital trusts in England. Neither NHSE, the ICB's or anyone else has collated and assessed this.
We have embarked on a little campaign to try and raise awareness of CHD and also to encourage discussion around these screening guidelines / inconsistent national screening practices. We don't expect the number of signatures alone to achieve anything. We have chosen this platform to enable us to share across numerous social media sites and populate regular updates. We've been very active and vocal.
https://www.change.org/Mollys_Missing_Heart_Views
This petition contains 12 months of work and research so far. We feel we have secured enough content which would support legal action from affected families.
The questions we are grappling with are;
-If hospitals don’t have the capability or can’t afford to retain such dynamic footage of our babies hearts, should patients be permitted to secure their own video footage of scans on their mobile phones?
-If hospitals are not permitting such patient recordings and are not retaining fetal cardiac views themselves is this ethical?
-As many hospitals do retain views (exact number still being collated) should those that don’t explain what they aren’t and provide patients the option of attending elsewhere? The responses we have received so far are indicating a north / south divide.
-Is it appropriate to charge £5 for such a small number of still images at the dating and anomaly scans whilst simultaneously not recording crucial fetal cardiac views?
-Rather than paying for a handful of still images, should patients be provided with the option of attending with a £5 USB stick instead to have the full video footage of the entire scan including fetal cardiac view footage?
-If trusts do not retain views themselves and also prevent patients from securing their own views during an examination, patients cannot verify that “the examination was carried out to a competent standard” as per the ScoR guidelines. Is this negligent on the part of trusts? Would this provide sufficient basis for legal action alone?
Thanks for reading.
Molly's parents (Gareth and Carly)