Patches

20/05/2026

https://www.facebook.com/share/18UBtSAwGs/

15/05/2026

https://www.facebook.com/share/18oBYQ79UQ/

21/04/2026

https://betweenthebeats.substack.com/p/when-hearts-and-minds-dont-heal-at-the-same-time?fbclid=IwdGRzaART8mVjbGNrBFPxImV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHshB4aKy53tfodEyLRxuchhGx50ySxIegkBfpX_tdNT3XB37VwMd8-S_m7D5_aem_KyqDW8GSZSy4-ocG7htsTA&triedRedirect=true&sfnsn=scwspmo

Depression, aggression, and their connection to children with cyanotic CHD

01/04/2026

https://www.facebook.com/share/1E4M1u32Sv/

Congenital heart disease: Changes to Disability Living Allowance for children from 1 February 2017

If you received a Disability Living Allowance (DLA) decision for your child between February 2017 and October 2020 and your child has congenital heart disease, you could be entitled to a review.

Read the full details here:
https://bit.ly/4v8QAVR

25/03/2026

https://www.facebook.com/share/p/1GWoLrc2h2/

Are you on the heart transplant pathway?

The UK currently lags behind other high income countries in terms of access to, numbers of, and outcomes from heart and/or lung transplantation.

A number of nationally appointed patient advocates are seeking Ministerial intervention. This includes a letter to the Secretary of State for Health and Social Care.

Catch the coverage online on Tuesday 24th March and tune in at 8pm to the radio documentary on BBC Radio 4 File on 4.

Read the letter to the Secretary of State for Health and Social Care and sign to show your support here: https://bit.ly/4rO5vBO

20/03/2026

https://www.facebook.com/share/14WfGTzdBGr/

The NIHR HealthTech Research Centre in Cardiovascular and Respiratory Medicine is inviting families of children with heart conditions to share their stories. If you’re a parent, carer, or family member of a child or young person aged 0–18 with a heart condition, your insight is incredibly valuable and can help improve support, information, and care for families across the UK.

📝 What’s involved?
A short, confidential survey that takes just 5–10 minutes.
Every voice helps make a difference. If this doesn’t apply to you, please feel free to pass it on to someone who might want to take part.

📲 Click the link below to get started

https://forms.office.com/Pages/ResponsePage.aspx?id=FM9wg_MWFky4PHJAcWVDVj1dh_Rh8SlCmi541F0Ay6xUOVZGNFU2OFdKUE9HMk5BREU2TzJUVDdSNi4u

17/03/2026

https://www.facebook.com/share/1NjGWzzNHM/

Most people only talk about the child’s surgery.
But very few talk about what happens to the parents afterward.

When a child undergoes open-heart surgery for congenital heart defects, studies show that 30–50% of parents experience significant trauma symptoms.

Not just stress.

Real trauma symptoms like:
• Reliving moments from the ICU
• Difficulty sleeping long after leaving the hospital
• Panic during medical appointments
• Constant fear something will happen again
• Feeling like you can never fully relax

This is often called medical traumatic stress, and it’s far more common in heart families than people realize.

Parents become the strongest people in the room for their child…
but that strength often hides what they’re carrying inside.

If you’re a heart parent and you’ve felt this way, you’re not alone.

And if you’re part of the CHD community, we need to start talking about this more.

Because supporting children with congenital heart defects also means supporting the families standing beside them.

You rarely hear what happens to the parents after the surgery ends.

Heart parents are expected to be strong for their child… but many carry trauma long after the hospital stay is over.

If this resonates with your journey, you are not alone.

❤️ Share your story in the comments
❤️ Send this post to another heart parent who may need to hear this
❤️ Like & share to help bring awareness to the mental health of heart families

The more we talk about it, the more families feel seen.

16/03/2026

https://www.facebook.com/share/1GhVyNbUwJ/

2025 2nd Edition – Annual Summary Reports Published & NCHDA Methodology.

Why can’t the public have a “good grasp” on individual centre detection rates too? Why do families continue to have access only to broad reporting statistics by NICOR either by region, ICS, ICB or STP? There are still multiple trusts in an ICS and as far as we can tell - NICOR previously reported on PPD detection rates by ICS. We seem to have gone full circle.

Relevant extract;

“There are evidently a large number of regions who have scope for considerable improvement in detection rates. However, of importance is that most regions have many local screening
centres sited within them, especially highly populated ones, such as the Thames Valley and London, with likely important centre-level variation in diagnostic rates within a region.

Going forwards the NCHDA is planning to move away from regional reporting in England to reporting antenatal detection rates along the geographic boundaries of Sustainability and Transformation Partnerships (STPs) and Integrated Care Systems (ICSs). Individual centres, however, should have a good grasp of how successful they are and be alerted of missed cases, mostly via links through their local fetal and paediatric cardiologist”.

Please just tell us who the poorer trusts or "centres" are. We'd like to know if there is correlation with those trusts that don't keep fetal cardiac records @ 20 weeks

15/03/2026

Happy mothers day you incredible people 🥰###