News
21/08/17 - Cardiac risk in the young Surgery Supporters Club
CHF partner group Cardiac Risk in the Young (CRY) has just launched the CRY Surgery Supporters Club for young people who have had, or are about to confront, potentially lifesaving surgery of implantation of a defibrillator, pacemaker, or ablation and want to talk to others who have been through a similar experience. Find out more […]
07/08/17 - Young cardiomyopathy information and support
Are you a young person diagnosed with cardiomyopathy? CHF partner group Cardiomyopathy UK has services for children, young people and younger-adults (CYP&YA). These include peer support volunteers and the CYP&YA Panel. Further information: http://www.cardiomyopathy.org/young-people/children-young-people-and-young-adults
31/07/17 - How a Molly’s dolly can help
CHF have found that parents and carers often find it an understandable challenge to explain a forthcoming congenital heart disease (CHD) surgery to their heart children. CHF’s Molly’s dollies can help to bring a visual and tangible link to this conversation. Molly’s dollies are a rag doll that can be personalised for each child’s unique […]
24/07/17 - CHF’s signposts and CHD answers
Whether you have questions about: transition information; education, health and care needs (EHC) assessments; disability discrimination; or home to school transport; you can find answers to these from CHF’s information service as well as our signposts page to organisations including IPSEA, Independent Parental Special Education Advice. Further information CHF’s signpost page: http://www.chfed.org.uk/how-we-help/other-organisations/ Further information IPSEA: https://www.ipsea.org.uk/
18/07/17 - CHD Information Service via Factsheets
Did you know the Children’s Heart Federation (CHF) offers an information service including factsheet sets about heart conditions and caring for heart children that are free to download and share? Further information: http://www.chfed.org.uk/how-we-help/information-service/
18/07/17 - CHD & Neurodevelopmental Outcomes
Research cited in ‘The Journal of Pediatrics’ addresses ‘Neurodevelopmental Outcome in Children after Fetal Cardiac Intervention for Aortic Stenosis with Evolving Hypoplastic Left Heart Syndrome.’ Further information: http://www.sciencedirect.com/science/article/pii/S0022347617301440 CHF’s Factsheet on Aortic Stenosis. Further information: http://www.chfed.org.uk/how-we-help/information-service/heart-conditions/aortic-stenosis/ CHF’s Factsheet on Hypoplastic Left Heart Syndrome. Further information: http://www.chfed.org.uk/how-we-help/information-service/heart-conditions/hypoplastic-left-heart-syndrome-hlhs/
Jul 18th 2017 - Response from CHF to the proposals from NHS England to implement the standards for congenital heart disease (CHD) services for children and adults in England
1. The capacity in which we are responding CHF is a national CHD patient/parent led organisation that represents patients with all forms of CHD and their carers. We have taken account of the views expressed by both our partner organisations and by individual parents and carers. 2. Our response to NHS England’s proposal that in […]
17/07/17 - NHS CHD Consultation Final Day
Monday 17 July 2017 is the last day of the NHS Congenital Heart Disease (CHD) Consultation. Please respond on this final day if you’ve not already done so, to make sure your point of view is part of the CHD conversation. Young people with congenital heart disease views are important for inclusion as well as grown […]
13/07/17 - CHD Consultation: Further Questions and Answers
NHS England has provided information addressing questions that have continued to be raised during the Congenital Heart Disease (CHD) Consultation. To find out more about these questions including ‘Why 125 operations per surgeon, and what is the evidence for this?’ as well as a further 23 questions relating to the consultation, please see further information […]
11/07/17 - NHS Annual Organ Donation and Transplant Activity Report 2016/2017
The total number of patients whose lives were saved or improved by an organ transplant during this time frame increased by 3% to 4,753. Key messages: 6 million people on the opt-in Organ Donor Register (ODR) at March 2017 (36% of the population); 204,518 people on the opt-out ODR at March 2017 with a further […]
