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; firstname.lastname@example.org
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 12.30pmOctober 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; email@example.com to reserve a place.
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!
Saturday 30th of August marked the end of summer for Children’s Heartbeat Trust with our last summer family day of 2014 but, as always, we went out in style!!
We had a busy start to the day watching sheep races, animal feeds and even a sheepdog agility display before stopping for a well-earned spot of lunch (and a few sweet treats!) After lunch, we were joined by the lovely Sister Alison to present her with a surprise retirement gift for taking such good care of all our little heart warriors over the past 28 years!
In the afternoon it was straight down to business….we had 10 Clark bears to find to complete our treasure hunt which were maybe a little too well hidden….clearly Clark did not want to go home and to be honest, neither did we!
Overall, we had a brilliant day at Streamvale Farm and we got to put our wellies to good use as we had a bit of a downpour in the afternoon but that did not put us off and it even made the tractor and pony rides more fun!!
Massive thank you to all of our fantastic families that came along on the day, it was great meet new heart families and catch up with the not-so-new!
Finally, we must thank all of the staff, volunteers and of course the animals on the farm for showing us such a good time!!
It is safe to say that teens, volunteers, nurses and staff had a blast during our first teens weekend! Lorne House proved to be the perfect venue to keep up with a truly amazing group of teens! On day 1 we kicked the weekend off with some great British Heart Foundation workshops that allowed the teens to talk openly amongst their peers and tackle some tricky topics in a friendly setting before going head to head in some teambuilding activities! That afternoon, the group took to the dizzying challenges of the high ropes course and discovered some hidden talent during the archery session which worked up a huge appetite for dinner! After an action filled day and once everyone had enjoyed some chill out time which included a very impressive song or two by a super talented teen, we relaxed with a film and some munchies including some gorgeous buns handmade by one of our specialist nurses, Tracy! After breakfast on day 2, once everyone had just about woken up from a night full of chatting rather than sleeping we got to hear from Nadine, Josh and Craig who are 3 of our adults with heart disease. They shared their stories, challenges and experiences with the group and took lots of interesting questions and queries from a very captivated audience! Paul was also on hand to help out with a videography project which allowed teens to give an interview to camera, sharing their thoughts and experiences. Unfortunately, the weekend seemed to end too quickly and before we knew it, it was time to say goodbye….until next time! Children’s Heartbeat Trust are already using your ideas to come up with a teens day out before the end of the year so watch this space!
A HUGE thank you to all of our fabulous teens, volunteer speakers, and to Paul who had everyone striking poses throughout the weekend…….hope he got our good sides! You all provided lots of laughs, shared your stories and formed friendships along the way which made the weekend such a success, we hope you had a blast!!