Archive for the ‘News’ Category
We can’t quite believe our 2014 Parent’s Conference has come and gone already but what a brilliant day we had! The ECOS Centre in Ballymena was our base for the day and although we had changed location we had a good turn out from families!
It was great to hear from our specialist speakers, get an insight into their area of expertise and give families the opportunity to ask questions in a relaxed environment. During the conference we were lucky to see cutting edge 3D cardiac images and specialist equipment that will arm surgeons with as much prior knowledge as possible before patients even reach the operating theater. The detailed pictures and videos that were presented really helped to gain a better understanding of what exactly goes on inside the heart and shows us the huge difference surgical intervention can make.
Thank you to each of our speakers for putting in so much effort to make this year’s conference an enjoyable yet informative experience for everyone!
All Party Group – “Teenagers and Congenital Heart Disease” **Please note start time changed to 12.30pmTuesday, October 28th, 2014
Children’s Heartbeat Trust have organised an MLA Information Session in Stormont with the All Party Group on Congenital Heart Disease. This session will take place on Tuesday 4th November and will focus on the transition service and the impact of heart disease on our heart teens. The session kicks off at 12 noon and we have a limited number of spaces available for heart families. If you would like to attend the session please email Sarah at; firstname.lastname@example.org to reserve a place.
Following the success of our 2014 Summer Blast Teen’s weekend we have organised a day out for Teen’s aged 11 – 16 with heart disease. This gives Teens from Northern Ireland the opportunity to meet people of the same age that are facing similar challenges in a friendly and relaxed environment (although I’m sure the bowling will take on a competitive edge!!) If you are interested in joining us or would like a little more information, please don’t hesitate to give Cathy a call on; 07436589480 or email; email@example.com
As we are quickly approaching December it’s time to dust off your Santa hats and re-tune your jingle bells as Christmas is on its way!!
This year we have 3 fabulously festive fun days spread throughout Northern Ireland for our heart families to enjoy. Please see pictures below for further details and contact Cathy by email ONLY on; firstname.lastname@example.org to book your space!
Please note: spaces are limited and will be allocated on a first come, first served basis so make sure to book early to avoid disappointment, Cathy will confirm your booking once your email has been received and spaces have been allocated.
Children’s Heartbeat Trust calls upon Mayer Report to be given complete and careful consideration.…
Sarah Quinlan, Chief Executive Officer of Children’s Heartbeat Trust, NI’s largest charity supporting children with congenital heart disease and their families said:
“The report has recognised the quality and strength of the cardiology services provided in Belfast, something which has been repeatedly highlighted by families right across Northern Ireland. However, despite the recognition of high standards in Belfast, the report does not see the number of surgeries undertaken here as viable. This is extremely disappointing for all of us who have led the campaign to retain surgery in Belfast. It is very important though that the Mayer proposals have once-and-for-all put an end to the notion that future provision of paediatric surgery for our children should be in England.
“It is critical now that Mayer’s proposals are implemented in full, strengthening the important care services provided in Belfast for heart children in Northern Ireland and equally important that a clear care pathway for these children is provided locally.
“The reports recommendations address key issues of transport, enhancing clinical services and the skills of clinicians, along with the provision of emergency care. Full implementation of Dr Mayer’s proposed all-Island governance structures, accompanied by commitments from both Health Ministers need to be in place to ensure that this all-island network will build on the world-class services currently offered in Belfast and Dublin.”
The International Working Group’s report included fourteen recommendations which would see an all-island cardiology and cardiac surgery network operating from Belfast’s Clark Clinic and Dublin’s Our Lady’s Children’s Hospital Crumlin. Sarah added:
“Dr Mayer’s report underlines the importance of creating a partnership between Belfast and Dublin, with staff at all levels working between the two sites and a surgeon attending Belfast twice monthly to hold clinics. This recommendation is key to ensure that heart children can still receive the vast majority of their care in Belfast and to maintain the skills of Belfast clinicians
Check out this fab interview with our very own Cathy Dalton in today’s Irish News. Hopefully this will help you learn a little bit more about what she does for the charity and what she likes to do outside of work.
Parents of children with congenital heart disease will be alarmed at the news that the International Panel’s report has recommended that the vast majority of children’s heart surgery on the island of Ireland should take place in Dublin. Speaking after Assembly questions, Children’s Heartbeat Trust Executive Officer Sarah Quinlan has said that the Minister must publish the report without delay and that key questions must be answered before any steps are taken to remove children’s heart surgery permanently from Belfast.
Sarah Quinlan, Executive Officer, Children’s Heartbeat Trust, said: “Parents will be alarmed at the Minister’s statement that the Independent Panel have recommended that the vast majority of surgery should move to Dublin without the report itself being published. We call on the Minister to publish the report so all those involved in the provision of cardiac care to children can understand how the panel reached this decision.”
“The campaign for the retention of paediatric cardiac surgery in Belfast has the support of most MLAs at Stormont across all political parties. We want to know that all children with a congenital heart defect in Northern Ireland can access safe surgery and emergency surgery as they need it.”
Sarah outlined the key questions which need addressed if surgery is stopped in Belfast:
- If surgery is moved to Dublin, what system will be in place to treat children born without ante-natal diagnosis? (i.e. where a defect has not been diagnosed during pregnant and an emergency cardiac situation arises after they are born).
- What steps is the Minister taking to ensure that cardiology and other specialist services are not subject to the same run-down that cardiac surgery has been subjected to?
Ms Quinlan continued: “We also want to see a strategic all-Island plan to address training and service provision for the next decade that will support the care of babies, children and adults right across the island with congenital heart defects. The Minister has the power and the political support within the Assembly to move positively on these matters, and we hope that he has the willingness to deliver.”
We are very excited to announce that our keynote speaker at the upcoming Parents Conference is one of the UK’s top paediatric and adult congenital surgeons, Mr Conal Austin from the Evelina Childrens Hospital in London!
Mr Austin is from Northern Ireland originally and we are delighted he is coming back to speak at the conference, especially as a lot of our families will know him well from traveling over to Evelina for their childs surgery.
He is joining a host of other specialist speakers covering transition services, inherited cardiac conditions, education needs, an advice clinic plus lots more.
The conference is taking place on Saturday 25th October at the ECOS Centre, Ballymena
To book your place email email@example.com, visit our website to download forms or call us on 028 9031 2228.
Early Bird offer is still on!