CHF attended the AGM of ECHDO the European Congenital Heart Disease Organisation from 9th to 10th March in Leicester. Attendees from countries across Europe shared experiences of issues relating to congenital heart disease and listened to a varied programme of lectures. TrustLaw presentation and main legal issues that NGOs might be facing Lauren Meyer, TrustLaw, Regional […]
AEPC Conference: Neurodevelopment and Psychosocial Care from Foetus to Adult 7th to 9th March. CHF attended this conference to promote the work of CHF to health care professionals and to learn more about how heart conditions can affect children’s development and psychological well-being. The full programme can be downloaded here and the presentation by Philip […]
Jan 18th 2018 - 16 January Disability Living Allowance (DLA) & Personal Independence Payment (PIP) Workshop
CHF led this workshop which was attended by people from a variety of heart related charities or organisations and a guest speaker from the Citizens Advice Bureau. Attendees were not only informed about the best approach for individuals to take when applying for DLA or PIP but were also able to share experience and information, […]
CHF is a member of this group which meets four times a year to identify current issues causing concern in the media or within Parliament. Information is shared and initiatives are taken forward to aid lobbying for positive improvements for children and young people’s health and welfare. The National Council for Child Health and Well-being (NCCHW) […]
CHF was presented with a cheque by Wilkin & sons in Tiptree to be presented with a cheque raised through their strawberry race held in June. Employee Leah was there with baby Freddie who is about to celebrate his first birthday. Freddie was born with Truncus Arteriosus but is doing well after four operations.
CHF had exhibition stands at the British Congenital Cardiac Association (BCCA) Annual ConferenceAt the Congenital Cardiac Nurses Association conference along with partner group Max Appeal. Cardiac nurses signed up to receive the Heart2Heart newsletter explaining how CHF can help with INR machines, Molly’s Dollies, Pulse Oximetry campaigning and providing an information service.
CHF attended the 5th General Assembly Meeting of the LENA project. It was good to see that the project is making progress and that the tablets have very little if any adverse affects upon the children in the programme. Parents seem to like the medication and report back that it is much easier to administer. […]
CHF visited the Houses of Parliament with other groups from the Healthcare in Schools Alliance, a group of children’s charities that over the years have pooled their resources and expertise to improve the welfare, education and health of school students. The Alliance is campaigning to ensure that schools have a medical conditions policy and for […]
A team from CHF including Beatty Bear visited Portcullis House, Westminster to campaign for pulse oximetry testing of all newborns. The test which monitors oxygen levels can pick up potential heart conditions that have not been found during scans in pregnancy. Early recognition of heart conditions can greatly improve the outcome for the child, reduce […]