News
19/03/18 - PHE screening standards revision
Following consultation, Public Health England (PHE) have updated their screening standards for Down’s, Edwards’ and Patau’s syndrome. The revised standards have an implementation date of 01 April 2018. All pregnant women in England are offered a screening test for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome between 10 and 14 weeks of pregnancy. This is […]
12/03/18 - Imaging the pediatric CHD heart
Research cited in Magnetic Resonance Imaging addresses methods to improve the coronary image quality in pediatric patients with a potential congenital heart disease (CHD) diagnosis. Researchers from Kings College London, Great Ormond Street Hospital, Royal Brompton & Harefield NHS Trust, Evelina Children’s Hospital and the University of Texas Southwestern Medical Center are together investigating this […]
07/03/18 - CHF’s ThinkHEART campaign
CHF’s congenital heart disease (CHD) campaigns include ThinkHEART. Do you know the five signs to look out for in an underlying heart condition? Find out and share from CHF’s ThinkHEART campaign webpage. Early detection helps save lives. Further information: http://www.chfed.org.uk/campaigns/thinkheart/
05/03/18 - Profound conversations: Organ Donation
Profound conversations may lead to profound gifts of organ donation in relation to children waiting for transplants in the UK. Research cited in The European Journal of Pediatrics addresses: ‘Organ and tissue donation in a regional paediatric intensive care unit.’ Further information: https://link.springer.com/article/10.1007/s00431-017-3084-8
27/02/18 - National Congenital Heart Disease Patient Experience Survey
A national Congenital Heart Disease Patient Experience Survey has been launched in all specialist surgical (Level 1) centres in England. There are separate surveys for outpatients and inpatients and for different age groups: A parent/carers patient experience survey aimed primarily at parents of babies and young children; A child patient experience survey; An adult patient […]
26/02/18 - Who is at risk of infective endocarditis?
You are more likely to get infective endocarditis if you already have a heart condition or heart valve damage. It is best to ask your cardiologist if you are more at risk of infective endocarditis. However, generally, your risk for developing infective endocarditis is increased if you: have had a valve replacement; were born with […]
26/02/18 - Adult congenital heart patients’ services: North West of England
Please can readers forward or share the information below; and most especially the Facebook group and contact number for adult congenital heart patients in the North West of England. The Children’s Heart Federation is concerned that not all patients are aware of this situation and hope that those groups who are more child, parent and […]
19/02/18 - Special conversations: Organ donation
CHF is joining NHS Blood and Transplant (NHSBT) and other key stakeholders in a social media special conversation on Twitter all week and on 22 February the Ministry of Housing, Communities and Local Government (MHCLG) will be doing a day of tweets on organ donation. The aim is to get faith groups and community groups […]
16/02/18 - Work matters & congenital heart disease
It’s important that you tell your line manager about your child’s heart condition. Especially if you’re going to need time off or to change the date of your return to work after maternity / paternity leave. Find out more from CHF’s information sheet Working with a Heart Child: http://www.chfed.org.uk/how-we-help/information-service/caring-for-heart-children/working-with-a-heart-child/
15/02/18 - Personal Health Budgets
A survey has been launched to understand people’s experience of personal health budgets. NHS England has commissioned an online survey to gather feedback about people’s experiences of personal health budgets in England. All current or previous personal health budget and integrated personal budget holders can register now to receive a link to the survey when it […]
