We love receiving private contact from those within the NHS. We've had input from sonographers, cardiologists, consultants, and senior management. Some professionals have held back exactly what they do due to concerns they might be identifed. We have always anonymised their input to ensure we keep receiving this valuable information from within. We've had further contact from many in recent weeks...
This private contact has validated our campaign completely. It has been so refreshing and reassuring. We've not really had any open engagement or open support from anyone throughout this. The bits we have been permitted to relay from organisations have been proof read and approved (before we published it). It seems there are various sensitivities involved.
Privately though, we've gained so much insight...
Some professionals have been shocked to learn of national practice and of the NHSE guidelines on fetal cardiac view retention. Some have been retaining fetal cardiac views for many years and due to this they were actually unaware of the non-prescriptive nature of the FASP guidelines.
Many sonographers have advised they have always retained fetal cardiac views and they too were also unaware of the FASP guidance on cardiac view retention. Some have suggested the FASP guidance doesn't make sense to them or that it is illogical not to retain views when the heart is being visually assessed.
Many professionals have described their own trust policies, protocols or Standard Operating Procedures which aren't compatible with the FASP guidelines. Many have directed us to relevant guidelines and publications that aren't compatible with FASP on this issue.
Some have approached us and reassured us they routinely retain images and have monthly meetings with individual sonographers. Further group meetings with full teams take place to discuss cases and promote and foster a culture of continuous learning.
Some have advised their trust performs regular audits on the quality of fetal cardiac views that are saved.
Some have advised the NCARDRS reports are reviewed and cases and images are looked at to ensure appropriate learning is implemented.
We're so grateful to these professionals. It has been refreshing to see such progressive attitudes and we think they are all ambassadors for the NHS.
The clinical value in view retention is now clear to us. We don't feel there is a debate to be had anymore. Surely a common sense approach is needed here.
We started this campaign 15 months ago. Nothing has really changed in this time as far as we're aware. That's another 1,000 + families that have left hospital with undiagnosed CHD during this time.
We keep being told the wheels turn slowly in the NHS - but there needs to be some traction. Now is the time for more open conversations around this issue.