Update 21; Varied and inconsistent FOI response content from trusts

We’re still waiting on 30 trusts to respond to our FOI’s.  A total of 93 trusts have responded so far (that do perform fetal anomaly screening).  Currently, 50 trusts have confirmed they do retain views.  43 trusts have advised they do not retain views. We’ve had some very interesting responses which demonstrate how much inconsistency there actually is.  

Within the same trusts some hospitals do and some hospitals don't retain views. Within the same integrated care system, some trusts do and some trusts don't retain views.  Accordingly, there is no consistency within the same CHD networks.  In the last 2-3 years some trusts have begun keeping views, while some trusts have actually stopped retaining views.  Trusts have referred to different systems they use for view retention (PACS and Viewpoint). Some trusts advised they retain all the FASP views, while some retain only a limited selection of them. Some trusts only retain one FASP view. It’s clear to us each hospital is acting independently and has the ability to set it's own policy.  There’s no consistency at all as a result.  

It's very interesting that most trusts are retaining views and demonstrates the majority view on the interpretation all the available guidance provided by numerous clinical bodies.  Some trusts have provided their individual SOP or local policies which has been insightful for the justification and rationale to retain views. 

-A trust advised they kept views but  “This is not a formal policy and not a national requirement”.

-A trust advised that previous policy did not require storage of cardiac views but many sonographers retained them anyway.  This trust’s policy changed within the last 12 months to retain the cardiac views.  

-A trust advised “most practitioners will obtain and store still images. Some practitioners will obtain and store clips and still images”.  

-A trust that retains images advised they want to retain video clips but there is insufficient PACS (Picture Archive Communication System) storage for them to do so.

A trust advised they only retain still images due to lack of storage space in Viewpoint (ultrasound scan software)

A trust advised they undertake a regular audit of the quality of the fetal cardiac images.   They retained images only but consultants were able to store video clips on PACS.

A trust advised they reviewed the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) report and reviewed their cases and retained images to ensure appropriate learning was implemented as required.

However;

A handful of trusts advised they don’t retain views but do retain just the FASP situs view.     

Another trust advised they do not retain views.  They retain only a situs view after training from a leading charity in September 2022.  (Queen Elizabeth Hospital Kings Lynn NHS Foundation Trust)

Some trusts clarified that images are only retained during Sonographer “preceptorship”.  Views are only kept during anomaly scans when performed by a student or newly qualified sonographer within their preceptorship (approx. 6 months after qualification).  In these cases a full series of still images are stored, including heart views. These sonographers will later progress to FASP only views following completion of the postgraduate course and a period of preceptorship which needs to be formally signed off following extensive image audit.  They no longer need to retain views following this.  

A trust advised that established sonographers assess the heart dynamically and are only required to store still images to the PACS in the event of an abnormality (or suspected abnormality)

A trust advised view retention was a matter of discretion for the sonographers. Generally speaking, they retained a single situs image only.  

A trust advised it is a dynamic study and involves watching the fetal heart for several minutes and therefore retaining images or clips was therefore not appropriate.  

A trust advised images were only retained by trainees, agency staff, new employees & for audit purposes.  However images were “stored on a more ad hoc basis from around the middle of 2022. Decision taken to stop storing the 3VT on a routine basis as views not mandatory to conform to FASP & felt storing of the images was a distraction from evaluating it in real time”.  

There are still 30 FOI responses to be returned so we can’t give you definitive figures yet.  We’re also concerned there is possible a trend indicating trusts in the North of England are largely not retaining views.  

If you’ve made it this far, these are the questions we posed to all the trusts on the 200 plus FOI requests we sent out (included for transparency);

“We are aware of the NHS England FASP 20 week scan guidance document.  “There is no requirement to archive images of the fetal cardiac protocol views”.  However, we are aware there is disparity amongst NHS hospital trusts nationally when congenital heart defects are not identified at this scan.  We understand some hospital trusts don’t retain fetal cardiac images, some do, and some retain video clips, and some retain both.  There doesn’t seem to be any consistency.  

We have been advised by NHS England and all the ICB’s that they do not hold the following information as it is “granular”.  We have been advised to approach each of the acute trusts.   

Our questions are;

1.When congenital heart defects ARE NOT identified during screening at the 20 week fetal anomaly scan;  

a)Does your trust currently retain the fetal cardiac views? 

b)Were fetal cardiac views retained in 2021 and 2022?

c)If views are currently retained, are these still images or video clips?  

d)For how long has your trust had this fetal cardiac view retention policy? 

Please feel free to access our online petition on Change.Org.  This will provide context to our request.  If you’re not comfortable accessing a link from a work device, please utilise your own personal device and search “standardise fetal heart scan protocols” on the Change.Org platform.  The information could be of benefit to friends or family.  

https://www.change.org/Mollys_Missing_Heart_Views 

Utilising the regional data in the NICOR 2023 National Congenital Heart Disease Audit, we’re seeking to establish if there is any correlation between those ICS’s / trusts that do not keep any records, and those ICS’s / trusts which have considerably lower regional antenatal detection rates.  Nobody we have approached seems to hold this information and therefore it seems there is no national co-ordination, review or assessment of this data.  

It has taken us 12 months to get this far through subject access requests and freedom of information requests.  We’re still trying to establish what happened to us as a family and why.  There certainly seems to be a lack of transparency or information provided to affected families such as ourselves”.