Patches

Patches Supporting children and families affected by Congenital/aquired Heart conditions & genetic conditions throughout their journey . Based in Nottinghamshire

We are a support group for families of children with heart conditions in the community. We aim to support all families including those whos children have complex needs due to genetic conditions / syndromes ,which may mean a vast aray of other health ,physical, speech & developmental
problems whatever their childs diagnosis . We offer friendly parent to parent support , information and signposting

. We have strong links with many professionals to ensure you get the support you need . We also loan breathing monitors to our families as well as oxygen saturation monitors if instructed or recommended by the childs team . We also help low income families with hospital costs (subject to criteria )


Our aim is to ensure all CHD families have access to community support from diagnosis through to adulthood x

Established in 2011

You can find out more by visiting our website

http://www.patchesheartgroup.org


We are also passionate about raising awareness of Congenital Heart Defects and will do our upmost to educate the general public on this and all areas associated with it x

24/08/2026

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

The Department for Business and Trade's consultation on employment rights for unpaid carers and parents of seriously ill children.

24/08/2026
Please do take time if possible to feedback your experiences ,especially those who have had multiple surgeries and those...
24/08/2026

Please do take time if possible to feedback your experiences ,especially those who have had multiple surgeries and those with older / young adults 🥰
https://www.facebook.com/share/p/1GVKknxHga/

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

https://www.facebook.com/share/1BHVorqHe4/
13/08/2026

https://www.facebook.com/share/1BHVorqHe4/

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

https://www.facebook.com/share/p/14kxcULV354/
03/08/2026

https://www.facebook.com/share/p/14kxcULV354/

What’s it really like to be a carer in 2026?

The State of Caring 2026 survey is a chance to share your experiences and have your say on issues including:
• experiences of the NHS, GPs and pharmacies
• support for your own health and wellbeing
• caring from a distance
• financial pressures facing carers

Take part today and make sure carers’ experiences are heard: https://surveymonkey.pulse.ly/xbeu79fmw2

https://www.facebook.com/share/p/1d9pqsXUtJ/
03/08/2026

https://www.facebook.com/share/p/1d9pqsXUtJ/

REMINDER if you are travelling to Guy’s and St Thomas’ in the next 2 weeks?
Please plan your journey ahead.
If you or your child has an appointment at Guy’s and St Thomas’ Hospital over the summer holidays, please be aware that there will be temporary changes affecting train services at London Charing Cross and London Waterloo East stations.
To help avoid any unnecessary stress or delays, we recommend checking your journey before you travel and allowing extra time where possible.
Please take a look at the latest travel information and suggested alternative routes before setting off.
We know that travelling to hospital can already feel overwhelming, so we hope this information helps make your journey a little easier.
If you know another heart family travelling to an appointment this summer, please share this post to help spread the word.
Guy's and St Thomas' NHS Foundation Trust

https://www.facebook.com/share/1DdYuMGJP5/
29/07/2026

https://www.facebook.com/share/1DdYuMGJP5/

☀️ With temperatures expected to rise above 30°C again this week, we’re resharing some helpful advice for staying safe in the heat when living with CHD.

ACHD Clinical Nurse Specialist ZoĂŤ Kabeli shares her top tips for managing hot weather.

Read the full article:
bit.ly/4pdB0Wj

What’s your best tip for getting through a really hot day? ❤️

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Nottingham

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