Archive for the ‘News’ Category
The all-island Congenital Heart Disease (CHD) Network Board, comprising of patient representatives, clinicians, service providers and commissioners is now meeting monthly. Children’s Heartbeat Trust sit on the Board to represent the views of children and their families from Northern Ireland. The aim of this Board is to develop a world class patient and family-centric Congenital Heart Disease Service for the island of Ireland and the charity will be working hard to ensure that this aim is at the centre of all the work of this group.
Children’s Heartbeat Trust are also Co-Chair of the Family Engagement Group which will feed into the Network Board. This group focuses on family and patient experiences, gathering and presenting feedback as well as communicating changes to the services and important information for families. The first meeting is scheduled for September and is a key way that we can shape the network service from the outset. It is really crucial that we take this opportunity to share your experiences, thoughts and ideas on what is working well and how the service can be improved. Please keep an eye on our website and facebook for ways you can get involved.
Since May 2015 catheterisations for paediatric patients have moved from Belfast to Dublin and are undertaken in Dublin by the Belfast team. By all accounts, both clinical and from families, this transfer has worked well which is testimony to the hard work and collaboration of a large number of clinicians and nurses from both the Belfast and Dublin teams. If you are awaiting a cath appointment you should be contacted by the team in Clark Clinic with all the information you require.
A huge challenge for our heart families is that currently the vast majority of families are still travelling to England for their child’s surgery. Although we have received assurances that when emergency surgery is required this will happen in Dublin, we are pushing for the investment needed to improve PICU capacity in Dublin to reduce the amount of babies, children and families having to get on a plane to access planned care.
Children’s Heartbeat Trust are here to support and represent our heart families during this transition period, so if you have any concerns or questions you can call us on 028 9031 2228 or email firstname.lastname@example.org
A great day was had by all at our first summer fun day of the year on Saturday 27th June 2015! We headed down to the Odyssey in Belfast to take on all the different tasks, challenges and activities that W5 had to offer!
W5 had lots to keep us busy, from train tracks to climbing frames and laser tag to graffitti walls there was plenty to keep the whole family entertained whilst we all got to know each other a little better!
Big thank you to everyone that could make it along on Saturday, we really enjoyed catching up with you all and meeting some new additions to our huge heart family! We have another family fun day coming up on Saturday 22nd August so please don’t hesitate to get in touch with Cathy on 074 36589480 or email; email@example.com to book your space!
Thank you to the team at claims.co.uk for making a very generous donation of £700 to Children’s Heartbeat Trust. This donation will go a long way to help support families in Northern Ireland that have been affected by children’s heart disease.
To find out more about Claims.co.uk and the charities they support visit http://www.claims.co.uk/about/charity
We are super excited to share details of our upcoming family fun days this summer and can’t wait to see lots of our fab heart families there!
We will be visiting W5 (Belfast) on Saturday 27th June and The Jungle (Magherafelt) on Saturday 22nd August. These Summer fun days are open to all the familiy and are a great way to meet other children, young people and families affected by heart disease and living in Northern Ireland. Please see posters for further details and email cathy@childrensheartbeattrust to book!
We are thrilled to share details of our 2015 Summer Blast! This trip is exclusive to teens aged 12-16 with heart disease in Northern Ireland and is a brilliant way to get to know other people your age that are also living with heart disease and take part in some fantastic outdoor activities during our overnight residential! To book, contact firstname.lastname@example.org
Children’s Heart Centre needed to ensure a strong future for children’s heart services in Northern Ireland.
A stand alone Children’s Heart Centre is key for the delivery of care for children with congenital heart disease, that was the message delivered today to MLAs at the NI Assembly All Party Group on Congenital Heart Disease. The plan for a Children’s Heart Centre for Northern Ireland has been developed by the Children’s Heartbeat Trust, who presented drawings of the proposal to the members at Parliament Buildings as part of Heart Week, the annual awareness week for congenital heart disease.
Attendees of the event heard from Tracey Wall, Divisional Nurse Manager at Our Lady’s Hospital, Crumlin who spoke of the benefits of a similar centre in Dublin, while Dr Frank Casey, Head of Paediatric Cardiology at the Clark Clinic, outlined the plans and the need for a NI Children’s Heart Centre.
The Children’s Heart Centre would develop and enhance the cardiology expertise and care that a child living with congenital heart disease needs, other than surgery. It would house a dedicated outpatients, facilities, services, training and support that cannot currently be met within the confines of the hospital at the moment.
Speaking at the event, Sarah Quinlan, Chief Executive, Children’s Heartbeat Trust, said: “The paediatric cardiology service in Belfast now needs investment and development. Families of children with heart disease have been promised an improved local service and we need to see that commitment being delivered. A purpose built Children’s Heart Centre in Belfast will allow delivery of a first class care for every child with a heart defect across Northern Ireland, as well as freeing up resources in the Royal Belfast Hospital for Sick Children.”
“Our vision for the Children’s Heart Centre encompasses all the care needs that children and their families require other than heart surgery and as they grow up. This will include regular appointments with specialist staff, investigations and tests. We understand that this will require capital expenditure, but this should be recognised as a long term investment in a service that hundreds of children currently access and that needs crucial support and development to maintain its current high standards in the face of losing its surgical element.
Happy Heart Week! Monday 18th – Wednesday 24th May marks our annual Heart Week, this year we are kicking it off with a bang with our ‘Ever been Heartbroken’ posters and billboards in towns and cities across Northern Ireland. If you see one near you please take a picture and post it on our Facebook, Twitter or Instagram page to help raise awareness of children with heart disease in NI. This is only the beginning – there’s lots going on this week so keep an eye on our Facebook and Twitter to get involved and don’t forget to use our hastags….. #niheartstars #heartchain
Facebook: Childrens Heartbeat Trust
As part of Heart Week the All Party Group on Congenital Heart Disease are holding an Information Event about what the new Children’s Heart Centre for Northern Ireland should look like. With Dr Frank Casey and Tracey Wall from OLCHC speaking this will be a really important and informative event to show exactly what our children’s heart services in N.I need! There are limited places available so let us know if you would like to attend.
We had over 120 people take part in the Belfast City Marathon events yesterday – the fun run, 8 mile walk, relay and full 26.2 marathon. The sun was shining, a cool wind was blowing and the supporters lined the streets to wish them all well. It was a fantastic day cheering from the sidelines and we were proud to see so many of our tshirts and race vests on display. Thanks to each and every one of you for giving your time and energy to raise both money and awareness for the charity.
Friday 22 May is our annual Wear Your Heart on Your Sleeve fundraising day!!
As part of our Children’s Heart Week, on Friday 22 May we hope to see lots of people wearing our fabulous red wristbands. You can help us raise awareness and funds by organising a Coffee Morning, Tea & Cakes, Wear Red to school or work & selling our wristbands!
To get a fundraising pack with posters and the wristbands and boxes please contact us below or email email@example.com