We recently secured a meeting with leading figures in NHS England, a regional CHD network lead and a leading charity. We now feel heard and valued. The meeting ran over an hour and there were many discussion points. Our understanding from this meeting is;
There is actually support within the CHD clinical community for the FASP guidelines to be updated and fetal cardiac views to be retained. It was accepted the FASP guidelines have not been reviewed for some time. The need to retain and the value in view retention is also recognised.
The Congenital Heart Disease CRG (Clinical Reference Group) are trying to influence change with FASP including requesting a review of the guidelines and direct cardiac representation within FASP to help with the development of screening and guidelines.
Any review of, amendment or potentially complete re-write of the FASP guidelines will take time. Unfortunately, no timescales or forecast could be provided for this.
If fetal cardiac views are ultimately retained, these will likely be still images. It was accepted video clips are considered to be the gold standard when assessing a rapidly moving 3D heart structure. However it was suggested data storage costs for each trust to retain video at every scan would likely prevent this.
All professionals in the meeting assured us that the national CHD networks, CRG and national work streams were going from strength to strength and considerable improvements have been made in recent years.
Dedicated and experienced charity representation within the meeting explained the extent of their work and commitment to improving detection rates.
We were struck by the passion, drive and expertise of all the professionals in this meeting. It was refreshing for us to have a meaningful and open discussion which we haven’t had previously. It became clear to us there is much we weren’t aware of or don’t fully understand. It was identified that our interpretation of the limited data sets accessible to us had been oversimplified in places. We accept and can now recognise this.
It was accepted that our suggestion of national co-ordination or assessment of who is keeping views and who isn’t, would be beneficial and is of value. It was suggested we no longer needed to pursue the national Freedom of Information Requests we have been submitting. The difficulties and complexities in potentially making direct comparisons between view retention and different detection rate data sets was explained to us. There are many other factors which feature and need consideration also.
It was explained that nothing could be publicised over the ongoing work of everyone involved until everything was finalised and formalised.
It was suggested that if they felt it appropriate, CHD charities could also write to FASP and show support for this proposed change also.