The CHD CRG (Clinical Reference Group) reached out to us again recently and provided an update following our teams meeting with them last month. The CRG advised that although the wheels turn slowly, they too are working to influence change in this area.
They advised that since our meeting with them;
The British Congenital Cardiac Association have written to the Chair of the FASP committee to request a review of the guidance on fetal cardiac image storage, and that there is a fetal cardiologist on the FASP committee on a permanent basis.
The CRG have also drafted a letter to the Chair of the FASP Committee, on the same lines as the BCCA and this is in the final stages of review and approval prior to being sent. This will also be copied to the NHS England Director in charge of the fetal anomaly screening programme, with whom the CRG have previously met on this matter.
The CHD networks have begun the process of collecting information on which of their referring trusts do or do not store fetal cardiac images. The CRG have also asked whether any of the referring trusts felt there were any practical barriers to image storage as part of the information gathering exercise. The CRG are still collating responses. However, from the information received to date, the CRG are aware that there is variation across the country in practice around image storage. The CRG are continuing to gather information. The CRG suggested it could be helpful for us to compare results and discuss further work with them, once we’d both received and collated all of our returns.
The CRG are continuing to analyse the results of a fetal cardiology survey commissioned by the CRG earlier in the year. They will be using the outcomes of this work to inform future service developments in fetal cardiology.
We also recently relayed the content of our last petition update to the CRG (outlining all the inconsistent FOI responses from the trusts). The CRG sought agreement from us to use this content in their discussions with FASP. The CRG suggested this content we have acquired may provide further weight to the argument for review by FASP.
The CRG kindly extended the offer of a further meeting with us if we felt this would be beneficial. We have suggested this would be helpful in a month or two when we had received all trust updates and when we felt we had exhausted everything in our power to influence change.
The CRG kindly gave permission for us to relay this update via the petition to all affected families who are collectively supporting and driving this campaign.
We’re grateful to the BCCA and the CRG for writing these letters to FASP. We appreciate the CRG updates and their open support for encouraging a review of the FASP guidance. Unfortunately we are still awaiting responses or updates from all the charities that we approached after we suggested they do the same (outlined in earlier update)