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

Nov 18th 2020 - Webinars for parents of children with heart conditions

Supporting your child coming into hospital. 23rd November 2020, 11am. Managing impact of a having a child with a heart condition, for parents. 30th November 2020, 1pm. Supporting siblings of a child with a heart condition. 7th December 2020, 11am

Nov 12nd 2020 - Updated information from BCCA and RCPCH in light of new lockdown.

The BCCA (British Congenital Cardiac Association) have updated their guidance for patients, parents, charities and support groups in light of the national lockdown for England. They can be read here. This advice is that those in the clinically extremely vulnerable group no longer need to follow previous shielding advice. Guidance advises attending school and returning […]

Sep 02nd 2020 - British Congenital Cardiac Association – update on returning to work and education

The BCCA has provided an update on returning to education for children with heart conditions. It can be read here. Helpful links: RCPCH talking to families British Heart Foundation children returning to school RCPCH shielding and education  

Aug 24th 2020 - CHF COVID-19 and beyond

CHF has continued to support children with heart conditions and their families during the pandemic and are making plans for the future. Read about what we have been doing here.  

Aug 13rd 2020 - Can you help us improve the quality of services for congenital heart disease?

The Children’s Heart Federation are involved in a new study called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. We want to hear your views on what makes services good quality, which includes understanding how COVID-19 has affected your experience of health […]

Aug 11st 2020 - Activity toolkits – feedback survey

Heart research UK have produced four toolkits about the importance of safe exercise for children and young people with heart conditions. They are eager to share these resources but would also like feedback about the resources, from parents, teachers and young people, in order to make improvements in future and to ensure needs are met. […]

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.

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