29/03/17 - Workshop for parents – supporting siblings of disabled children
Parents in East London may be interested in this workshop run by Sibs a UK charity that supports people who grow up with or have grown up with a disabled brother or sister. This workshop will help parents of disabled children find ways of giving attention, information, and support to the other children in their […]
Mar 27th 2017 - Sign for life 2017
The Children’s Heart Federation supports the sign for life 2017 campaign. Read the story of Rhys an 11 year old who suffered from cardiomyopathy who received a heart transplant. Find out more about how organ donation can help save lives. Register here and remember to share your decision with your relatives.
22/03/17 - NHS to notify heart surgery patients of small risk of infection caused by heater cooler units
The NHS yesterday (Tuesday 21st March) took the precautionary step of writing to patients who have had certain types of open heart surgery to inform them that they may have a low risk of having contracted an infection caused by Mycobacterium chimaera (M. chimaera). Over the next two weeks, letters are being sent to patients in England, Scotland, Northern Ireland and Wales who have […]
Mar 20th 2017 - An opportunity for young people with CHD to be heard
The NHS would like to hear from young people with congenital heart disease with their opinions about the planned changes to CHD services nationwide. Find out more and complete the survey here. NHS survey for young people with CHD Please know that the NHS Congenital Heart Disease (CHD) consultation closed on 17 July 2017. Please watch CHF’s […]
13/03/17 - New study in the USA explores the benefits of pre-op 3D printed hearts
“This study is incredibly important because it will finally quantify what we know from first-hand experience: 3D-printed patient-specific models improve surgery, improve outcomes and result in lower treatment costs,” said Dr Yoav Dori, Peadiatric Cardiologist, Children’s Hospital of Philadelphia. “If we can empirically demonstrate this, it will be a game-changer for treating not only children […]
08/03/17 - Building the Right Support, Transforming Care Together National Conference
Date: Tuesday 28th March 2017 Venue: Molineux Stadium, Waterloo Road, Wolverhampton, WV1 4QR Time: 10.00am – 4.00pm The conference is being delivered with the NHS England and partners to increase understanding and awareness of the Transforming Care agenda to disabled young people, parents/carers from diverse communities and stakeholders.There will be workshops and discussions regarding Building […]
07/03/17 - CQC report on the state of care in NHS acute hospitals
The Care Quality Commission (CQC) the independent regulator of all health and social care services in England has published a report on the state of care in NHS acute hospitals. Download it here.
Mar 06th 2017 - “Tell us about your care” – Disability Rights UK
You may be interested in giving feedback on your experiences of care either for your family member or yourself. Disability Rights UK have recently entered into a year long partnership with the Care Quality Commission (CQC) to gather feedback from disabled people about their experience of health and social care services, via CQC’s ‘Tell Us […]
01/03/17 - Safety and Inclusion of Children with Medical Conditions at School – All Party Parliamentary Group Meeting
A representative from the CHF attended a meeting at the House of Commons today looking at the support given by schools to children with health conditions such as a congenital or acquired heart disease.
