News

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

Aug 03rd 2020 - Rowan’s story

Told by his mother Kerry When my son Rowan was one week old I noticed he looked a little blue around the edges, was breathing heavily and his fingernails had turned purple. We went straight to A&E because he was so young and small. My husband wasn’t allowed to accompany us because of coronavirus restrictions.  […]

Jun 18th 2020 - Feeding toddlers with heart conditions

Children with heart conditions are often reluctant eaters so need to get the most out of everything they eat and drink. This  book is written by paediatric dietician Luise Marino specifically to help with feeding children with medical conditions. It contains recipes and practical advice about feeding a child with a medical condition. If you […]

Jun 12nd 2020 - COVID-19 advice: practical guidance for patients, parents, charities and support groups from the BCCA

The BCCA  (British Congenital Cardiac Association) has updated its guidance on COVID-19 for people with heart conditions.  The guidance includes information for people with congenital heart disease, topics covered include COVID-19 advice for vulnerable and extremely vulnerable groups, returning to school and hospital care. Dated 11 June 2020. A pdf version of the guidance can […]

Jun 03rd 2020 - Independent Sage Report on schools reopening

Many views have been expressed about whether or not schools should reopen at beginning of June, so we thought it would be helpful to provide a link to The Independent Sage Report on when schools should reopen.

Jun 03rd 2020 - Schools reopening government guidance

The latest guidance from the government on school reopening.

Jun 03rd 2020 - Update to shielding guidelines

For those with children in the extremely vulnerable category, the shielding guidance has been updated. The update has been made as part of the Government’s wider relaxation of ‘lockdown’ and its assessment that COVID-19 disease levels are “substantially lower” now than when shielding was introduced. Details here.

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 […]

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