Jun 15th 2020 - Riley’s story
Told by her mother Chloe. Riley’s condition wasn’t picked up at ante-natal scans or after birth. When she was six and a half weeks old we took her to hospital for the first time because we were concerned about her being sleepy and refusing feeds. It was the end of January 2020. The doctor on […]
Jun 15th 2020 - Sebastian’s story
Told by his mother Julie. My son Sebastian was three months old when doctors discovered he had two holes in his heart. In December 2016 Sebastian had became very ill and after collapsing at home was rushed by ambulance to our local hospital. He was being treated for bronchiolitis that had developed from a bad […]
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 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
