Monday 17th November is a very important date for all of our heart families as the Paediatric Cardiologists from Clark Clinic are coming to speak with our heart parents and families about the changes to our cardiac services at The Elk, Toomebridge from 7.30pm – 9.30pm.
During the meeting we will be discussing these changes directly with our Cardiologists and will be hearing about how we can help support and strengthen the changes and the Clark Clinic team.
This is an incredibly important meeting and your opportunity to ask questions and get advice! We are expecting a large turnout so please confirm your attendance by emailing email@example.com no later than Thurs 13 November.
Thanks everyone, look forward to seeing you all there,
Just a day after the launch of the consultation process on the future of paediatric cardiac services in Northern Ireland, the Assembly’s All-Party Group on Congenital Heart Disease heard directly from teenagers living with the disease. Lucy Allen (16) and Zoe Fleck (12) discussed how the transfer from children’s to adult services affects them and what it’s like to live with congenital heart disease. Dr Chris Lockhart, an adult congenital cardiologist, also spoke at the event.
With 200 babies born each year with a heart defect, congenital heart disease is the most common birth defect in Northern Ireland. Around half of these will need either medical treatment or heart surgery and will require ongoing monitoring throughout their lives. Developments in medicine and the success of paediatric cardiology and cardiac surgery means that more children born with a heart defect are now reaching adulthood.
Increased survival rates means that treatment pathways for teenagers are not always clear. A recent analysis by NHS England found that in 2012/13 around 17% of patients receiving specialist inpatient care were aged 12 –18 and are therefore in what is described as ‘transition’.
Lucy Allen, a teenager with Hypoplastic Left Heart Syndrome said: “When I was brought to the adult hospital I felt completely uncomfortable and awkward. Although the doctors and nurses were lovely, I was still the youngest there and it made me feel isolated.Clark Clinic felt like a second family to me so to suddenly have a different doctor was quite a shock.”
Sarah Quinlan, Chief Executive of Children’s Heartbeat Trust said: “Adolescence is already a difficult time for many young people, not to mention for those with complex heart defects who face many additional challenges. To help enable a smooth and seamless transfer of care the transition service needs to be properly resourced with staff, clinics and age appropriate inpatient wards. Most importantly, young people, carers and parents need to be at the centre of any decisions and fully informed about their care and support available.”
Also at the event was Zoe Fleck who has Pulmonary Atresia with Hypoplastic Right Ventricle and Intact Septum. She said: “I am never afraid of going to Clark Clinic I don’t even mind if my mum and dad have to leave me for a little while because I feel safe there. I am a little worried about moving to the adult hospital but I feel a bit better now having met Dr Lockhart.”
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