News

This page feeds the latest news from all parts of our website.

May 27th 2020 - Back to school or not?

Returning to school – we have managed to obtain some guidance on this from the BCCA. (British Congenital Cardiac Association). Children and young people who are considered extremely clinically vulnerable and shielding should continue to shield and should not be expected to attend. Clinically vulnerable (but not clinically extremely vulnerable) people are those considered to […]

Apr 23rd 2020 - What are your views on using patients’ health data to try to improve services?

The Children’s Heart Federation is involved in a new research project called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. Many research projects collect new data and, as part of that, patients are explicitly asked to consent to that new data being […]

Apr 21st 2020 - Henley’s story

Told by his mother, Danielle I had a scan when I was 21 weeks pregnant, my baby was diagnosed with hypoplastic left heart syndrome (HLHS).  Henley was born in 2013 and after he was examined by the cardiologist, the diagnosis was changed to HLHS with complete unbalanced AVSD and vessel variation. Henley has had three […]

Apr 15th 2020 - What are your views on using patients’ health data to try to improve services?

The Children’s Heart is involved in a new research project called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. Many research projects collect new data and, as part of that, patients are explicitly asked to consent to that new data being used […]

Apr 14th 2020 - Take part in the SHARE study – what is your experience of COVID-19 coronavirus?

The University of Southampton and the University of York are researching how children and young people with congenital heart disease and their parents are finding life during the COVID-19 coronavirus outbreak. The SHARE study: how are you coping. Parent survey Child Survey For more information, contact: SHARE.study@soton.ac.uk

Apr 07th 2020 - An important message from the NHS for parents regarding COVID-19 and children.

If your child is ill or injured it can be difficult to decide if/when to call your child’s GP, NHS 111 or go the Accident and Emergency Department (A&E). During the current situation and while the government is asking everyone to stay at home, it can be confusing to know what to do. Here is […]

Mar 31st 2020 - COVID-19 coronavirus advice and information from CHF

COVID-19 coronavirus general information It is good to keep informed by trustworthy sources.   An easy to read guide from Public Health England, please share. General advice and information produced by the Citizens Advice bureau. Symptoms Social distancing Public Health England advises that vulnerable groups should practice social distancing stringently.   Most children with heart […]

Mar 31st 2020 - COVID-19 INR campaign

CHF is campaigning to raise funds to buy INR machines for children on blood thinning medication. It is vital that these children can have their coagulation levels tested at home to stop them from being put at risk of contracting the COVID-19 coronavirus. Please support and share this campaign.

Mar 30th 2020 - Update to BCCA guidance on COVID-19 coronavirus

The latest update on COVID-19 Coronavirus from the BCCA, it clarifies that the extremely vulnerable group includes just the following: Extremely vulnerable groups for shielding Among people with congenital heart disease, only the following groups are considered to be extremely vulnerable and therefore needing to follow Government guidance on shielding: • Solid organ transplant recipients […]

Mar 23rd 2020 - Help CHF buy INR machines to keep children safe at home

The coronavirus has closed schools and everyone is encouraged to postpone hospital visits or access medical advice remotely. This is impossible for children on blood thinning medication who need to have their coagulation (clotting) levels checked regularly. CHF wants to provide more INR machines for children on blood-thinning medication such as Warfarin during these difficult […]

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