Heart2Heart - ISSUE 52
September 2017
Dear Heart Community Members,
Welcome to the 52nd 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
We’re still waiting to hear when the board of NHS England will make their decision regarding the future of congenital heart services, we’re hoping it will be at their meeting on 28th September but understand it may be delayed until their November meeting. They’re still analysing the 7500 responses to the consultation which has been made more challenging by the last minute proposal by the Royal Brompton and the Evalina to set up a joint campus. We await further news and will keep you informed.
Research & development
Adults with CHD and Atrial Tachycardia
Research cited in ‘Circulation: Arrhythmia and Electrophysiology’ addresses ‘Natural History and Clinical Predictors of Atrial Tachycardia in Adults With Congenital Heart Disease.’  CHF has received requests via social media for more information about this area of CHD research.  This study evaluates the incidence and clinical predictors of atrial tachycardia in a cohort of patients with congenital heart disease.  If there are any specific areas of CHD research that you would like CHF to include within our next issue of Heart2Heart, do please send requests via info@chfed.org.uk. 

Free health & social care fact checks in one working day

Did you know that The Kings Fund provide a free enquiry service within one working day?  If you require the checking of a fact or reference, The Kings Fund Information and Knowledge Service can support you with this service through searching their substantial database. 

Home news

Personalised congenital heart disease (CHD) support
Young adults between the ages of 12 and 35 now have their own personalised congenital heart disease (CHD) support platform via CHF partner group Cardiac Risk in the Young (CRY’s) myheart network.  This support network is identified by young people as a key resource to dealing with matters such as having a pacemaker fitted; undergoing ablation therapy and having a direct connection with young people who have a lived experience of dealing with a heart condition.

Forthcoming information days about cardiomyopathy

Keep watch on CHF member group Cardiomyopathy UK’s website for forthcoming information days about cardiomyopathy in 2018.  These days are held each year throughout venues in the UK.  This provides an opportunity of dynamic information exchange for people who have been diagnosed with cardiomyopathy, as well as their friends, families and carers to hear about cutting edge research and developments in the field of cardiomyopathy.

Further information
Facebook groups for those bereaved by sudden young cardiac death

The grief of losing a young person to sudden cardiac death is especially searing.   CHF partner group Cardiac Risk in the Young (CRY) has set up private groups that only bereaved mums, fathers, siblings, partners and family and friends can join via an invitation from CRY.  If you or a colleague or loved one would like to know more about this support network, please see the following link.
Information & policy
Safe in School Campaign is going to Parliament
  • Are you a parent, carer or grandparent of a child with a heart condition?
  • Do you live in England?
  • We need your help to keep children Safe in School.
  • The Health Conditions in School Alliance is taking the Safe in School campaign to Parliament on 23 October 2017 to fight for the rights of children with long-term medical conditions.
Click here for further information about the campaign and to find out what you can do to help.
CHF supported campaigns

In addition to CHF’s congenital heart disease (CHD) campaigns, we also support specific campaigns that we consider will lead to improved awareness and thereby support, for congenital heart disease children and their families. 

Find out more about CHF’s supported campaigns and why we’re collaborating with specific groups.
CHF and partners calendar

Max Appeal

Patient Support Event 22q Family Day
Saturday 30 September 2017

Glasgow Royal Hospital for Children
Downs Heart Group

Coventry to host first Trisome Challenge to people with Down Syndrome.
Saturday 11 November 2017

CHF, Dragon Enterprise Centre, Cullen Mill,
Braintree Road, Witham, Essex CM8 2DD
Tel: 0300 561 0065
Registered charity No 1120557, Registered company No 6329763