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 […]
Feb 14th 2018 - Phoebe’s story
When Phoebe reached the age of eight weeks, she stopped breathing and had to be resuscitated, this happened again six weeks later and then gradually more frequently until it became a weekly occurrence. Phoebe would go floppy and lifeless for anything from ten seconds to two minutes. After numerous tests on Phoebes’s brain Phoebe was […]
Feb 13rd 2018 - Ava’s story
Ava was born on the 10th December 2015. We weren’t aware of Ava’s heart condition until she was rushed to hospital at just under one month old, she was very grey/blue in colour and breathless, she also had poor weight gain resulting from poor feeding and vomiting. We had taken her to the GP several […]
Feb 07th 2018 - 7th Feb “Show you have a heart” bracelet
CHF has produced some new bracelets to promote CHD awareness. They can be bought from the CHF shop for an opening bargain price of £1 each, from 1 March the price will go up to £2.00. Go on, show you have a heart!
Jan 29th 2018 - James’s story
At ten weeks old James had a bad night crying continually, not the normal cry to be fed or changed, it was a constant whimper. After such a sleepless night he was asleep in his chair by 11.00 am. I fed him at midday but he was immediately sick, so I took his temperature, it […]
Jan 23rd 2018 - Indi’s story
Our daughter Indi was diagnosed with Tetralogy of Fallot, a Right Aortic Arch and MAPCAs – Multi aorto-pulmonary arteries. (A number of additional arteries come from the aorta and supply the lungs with blood). I had no awareness of CHD and Indi was surviving on SATs in the low 60s. The Doctor told us she […]
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, […]
Jan 18th 2018 - 29 November – National Council for Child Health and Well Being
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) […]
20/12/17 - Pulse oximetry video
Today we have posted a video on the homepage that was in the news in 2012. Sadly pulse oximetry is still not provided as a matter of course at all hospitals. So we are still campaigning for pulse oximetry. Find out more about the campaign here.
18/12/17 - CHF’s congenital heart disease (CHD) support networks
A challenge shared is a challenge halved. CHF offers congenital heart disease (CHD) awareness and support together with our partner groups. In addition to accessing CHF’s CHD information sheets, parents can join our social media platforms and Facebook groups to share insights and advice about caring for a heart child and their siblings. Find out […]
