Heart2Heart - ISSUE 50
August 2017
 
 
  
 
 
Dear Heart Community Members,
 
Welcome to the 50th "golden" issue of the Heart2Heart newsletter. 
 
This publication aims to keep its subscribers informed and updated with the latest news, events and policy briefings from all corners of the CHD community. 
 
We're always working to improve Heart2Heart so your comments and suggestions are more than welcome. Your messages should be directed to info@chfed.org.uk

 
 
 
 
 
Research & development
Paediatric intensive care & parental feedback

Researchers are inviting feedback from parents with children who have been in paediatric intensive care.
 
The study being conducted at King's College London is exploring a new intervention that might reduce distress following a stay in paediatric intensive care. 
 
Researchers of this study welcome any parents of children who have been in paediatric intensive care to take part. 
 
The survey will take approximately 1-2 minutes to fill out and there is an option at the end if any parents would like to go on to complete a more in depth 15 minute interview.
 
 
Genetics of sudden cardiac
death research

Research cited in the Journal of Biomedical Science addresses sudden cardiac death and focuses on the genetics of channelopathies and cardiomyopathies including hypertrophic cardiomyopathy ‘one of the most frequently observed inherited cardiomyopathies (incidence of approximately 0.2%).’
 
 
 
 
 
Home news
Golden Heart2Heart

For this 50th issue of CHF’s Heart2Heart, CHF is looking forward and looking farther. 
We’re taking this inspiring platform to look ahead to focus on congenital heart disease (CHD) and the importance of having access to:
  • clear and impartial information;
  • easily shared CHD resources as offered by CHF’s informational support;
  • collaborative CHD partnerships that focus on the heart child and family.
 

Accessible Information  

All organisations that provide NHS care and / or publicly-funded adult social care are – since 01 August 2016 – legally required to follow the Accessible Information Standard.
In August 2017, revised versions of the Specification and Implementation Guidance were issued following a post-implementation review of the Standard.
 
It requires all applicable organisations to:
  • identify
  • record
  • flag
  • share
  • & meet the information and communication support needs of patients, service users, carers and parents with a disability, impairment or sensory loss.
 
 
 
 
 
 
Information & policy
Children’s Acute Transport Service (CATS)

Are you a health professional working with a family whose child requires acute transport services?  You are welcome to access a booklet detailing the CATS service.  The booklet is also provided in Arabic, Hindi, Bangladeshi, Polish and Urdu.
 
Further information
 
 
Volunteer befrienders for grandparents in grief for a grandchild
 
Familial grief for the loss of a grandchild can be deeply traumatic and exacerbated if grandparents are living at a distance from the child and their family and loved ones.
 
 
 
‘A very deep sense of loss may be felt by those who live far away from the grandchild, and may not have been able to see and hold him or her before their death. Other relatives may also feel this way.’
 
To find out more about volunteer befrienders of grandparents who have lost a grandchild please follow this link
 
CHF, Dragon Enterprise Centre, Cullen Mill,
Braintree Road, Witham, Essex CM8 2DD
Tel: 0300 561 0065
 
Registered charity No 1120557, Registered company No 6329763