Patches

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We've spoken alot about the NICOR CHD PPD detection rates (procedures with prenatal diagnosis). We have tried to source more data through NHSE and even appealed to the ICO and GRC in pursuit of this. It's hard for us to tell what data actually exists.

The Tiny Tickers website explains more about the limitations of PPD detection rate data;

"The National Institute for Cardiovascular Outcomes Research (NICOR) collates data relating to antenatal diagnosis of congenital heart defects. Currently, their data set is limited to patients treated by surgery or intervention in the first year of life – meaning it is not an overall antenatal detection rate as it doesn’t include terminations; deaths during pregnancy or peri-natal deaths; conditions that don’t require treatment in the first 12 months; cases detected post-12 months; or instances where intervention is decided against due to the complexity of the patient’s condition(s).
However, this is the best data available at this time, and provides a strong indication of antenatal rates in our nations and regions."

We recently signposted to an October 2025 publication in the BMJ. This report concluded
"Most studies of CHD report only on babies who undergo intervention, which creates bias."
WHAT THIS STUDY ADDS
"In England (2018–2020), nearly two-thirds of
CHD cases were detected before birth, rising to
over 90% for the most complex conditions."
"Registries and quality improvement efforts
should include all CHD cases to provide a
complete picture and guide counselling, service
planning and policy."

We don't know why six year old data is being referenced here. It seems to us that the detection rate data held is fragmented, incomplete (or outdated) and lacks co-ordination... preventing improvements in services. In 2026 the "complete picture" should really be known and available to practitioners and families. It seems we have a lack of consistency and transparency that is preventing meaningful assessment and comparison between trust practices and outcomes. We shouldn't have to settle for the "best data available at this time" or "biased" and disconnected studies. We still remain gobsmacked that no organisation supposedly knew of trust record retention practices throughout England until we sent off our FOI requests.

20 week scans are being performed and cardiac views are being observed routinely - trusts just need to capture them. Nobody is suggesting otherwise now and 57% of trusts can seemingly manage it.
The burning question for us remains; Is there any correlation between trust record retention practice at the 20 week scan and CHD detection rates?

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Sending love to you all ❤️

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Today is world Heart day !
So share some facts
Tell your story
Raise awareness

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💙 Your experience could help shape the future of intensive care support.

We’re continuing our open discussions as part of a research study led by Great Ormond Street Hospital and University College London.

The study aims to understand what it’s really like for young people and their families who have spent time in a children’s intensive care unit

📅 Next discussion dates:
👨👩👧 Parents & Carers: Monday 21st September
🧑🤝🧑 Teenagers & Young Adults: Tuesday 22nd September

👉 Interested in taking part? Sign up via our Eventbrite link in the comments.

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Sign the Petition Standardise fetal heart scans

Hugh's Law is a national campaign calling for statutory paid leave and employment protections for parents of seriously ill children, which the government is currently consulting on.

If you would like to make your voice heard, please take part in the consultation here:
https://ditresearch.eu.qualtrics.com/jfe/form/SV_3rwllMYn7jI2Tlk

The deadline to take part is Tuesday 1st September.
https://ditresearch.eu.qualtrics.com/jfe/form/SV_3rwllMYn7jI2Tlk?fbclid=IwdGRjcAT5Y_ljbGNrBPlj9XBkb2YBZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQMMzUwNjg1NTMxNzI4AAEeIcmzHLyR8fx-4VIJoRvOsQWVYdKlsaqwu42PqP6nX_edcPyms3UuIhwWn1g_aem_xVtN9mYxV9icmDpiryi73Q

Consultation on Employment Rights for Unpaid Carers and Parents of Seriously Ill Children The Department for Business and Trade's consultation on employment rights for unpaid carers and parents of seriously ill children.

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Please do take time if possible to feedback your experiences ,especially those who have had multiple surgeries and those with older / young adults 🥰
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If you’ve spent time in children’s intensive care, your story matters.

We’re are hosting open discussions as part of a research study led by Great Ormond Street Hospital and University College London

We’re trying to understand what it’s like for young people, and their families, who’ve been in a children’s intensive care unit, to improve these services for young people and their carers.

We want to know how it felt, what went well, what was difficult, and what could make it better for others in the future

Sign up via our Eventbrite link
https://www.eventbrite.co.uk/o/childrens-heart-federation-32524354869
We can’t wait to talk

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Behind every signature is a family navigating hospital appointments, treatment plans, uncertainty, and the daily challenges that come with caring for a child with a heart condition.

For many families, traveling long distances for specialist care is often unavoidable.

The financial burden shouldn't be.

🚨With the September 12th deadline approaching, we need your help to show that families deserve fair access to support when their children need specialist treatment.

📢 Please sign and share the petition:
https://petition.parliament.uk/petitions/759770