General Regulatory Chamber First-tier Tribunal request withdrawn. We wanted to identify who the poorer performing trusts were at detection rates. We were repeatedly refused this data under FOI.
We don't understand how the National Institute for Cardiovascular Outcomes Research (NICOR) publications can be compiled from the very limited material NHSE ultimately provided to us. We suspect much more data is held (despite the Information Commissioners Office decision notice in our case).
Unfortunately we recently asked for a hearing to withdraw our appeal to the GRC. Both the Information Commissioners Office and NHSE were legally represented. We have family responsibilities elsewhere and don't feel we can continue. Extract from our request;
"We are not confident this appeal has a realistic prospect of success. We are not represented or legally qualified. We have no experience of this process. On this basis we do not want to burden or adversely contribute to the already stretched resources of these public organisations. Equally, as a family we cannot afford any orders for costs.
Please be advised we are not attempting to compromise the fragile NHS ecosystem. We understand public services and resources are already stretched significantly. Following our own lived experiences and anomalies in our medical records we are trying to encourage transparency and improvements in pregnancy screening services. We have tried to push for consistency and standardization to help save the lives of children."