Archive for 2014

Christmas Cracker No.3!

Tuesday, December 23rd, 2014


On 8 April 2013, over 80 MLAs signed a pledge to protect childrens heart services in Northern Ireland.

Although the children’s surgical service is now moving to Dublin, we think the MLA’s should be reminded of their promises to heart families across Northern Ireland and asked what they are doing to ensure that heart children in their constituencies will be able to access their care in a service that has been invested in and protected against any further dismantling.

On our facebok page photo albums we have one album set up for each constituency with pictures of each MLA who signed that pledge. Please share and tag your MLA to remind them of their signed pledge to heart families.  You can see the albums at

This Christmas we need our MLA’s to deliver for heart children!


ChristmasCrackers x3F

Talking Teen’s

Monday, December 22nd, 2014


The Department Of Health have scheduled a consultation meeting with teenagers that have  heart disease on;

Saturday 10th January 2015 from 11.30am – 12.30pm at The Pavillion, Stormont.

This meeting will give teenagers between 11-16years old an opportunity to input into the future cardiac care and cardiac services for young people with heart disease in Northern Ireland.

We will follow the meeting by treating you to lunch nearby and planning our next day out! If you are interested in joining us, please contact Cathy on:  07436589480 / or Sarah on: 07584164815 /

Look forward to seeing you all in the New Year!

Christmas with CHT!

Saturday, December 20th, 2014

As we have so many lovely heart families to celebrate with, this year we held 3 festive fun days in Omagh, Belfast and Derry to get us in the christmas spirit!

Santa Baby!

Santa Baby!

It was great to see so many families at each of the fun days and we got to meet some very special guests along the way!


We had our Christmas party at the Silverbirch Hotel in Omagh on Sunday 30th November. There were lots of games and activities to take part in and after a tasty lunch Santa and his good friend Olaf popped in to pay us all a visit and join us on the dancefloor…..we think he could smell the hot chocolate all the way from Lapland!


Our Frozen Premier was held in Belfast on Saturday 13th December and was very glam! We had lots of beautiful princes and princesses walking the red carpet and we got to meet Anna, Elsa and Olaf before Anna and Elsa took to the stage for a special live performance! We had just enough time to finish our popcorn before the film started so we could sing along to each song… haven’t had a true Frozen experience until you have heard a room full of heart heros’ singing let it go in all its glory!!


Our final Christmas event of 2014 was our Christmas Panto which was held at the Waterside Theatre in L’Derry on Sunday 14th December. We were treated to a fantastic performance of Sleeping Beauty that included one of our very own heart heros’ and we even got to meet the cast after the show…….VIP treatment!!

CHT Derry

Thank you to everyone that came along to our Christmas events, it was brilliant to see so many of you! We wish you all a very Merry Christmas and a drama-free new year from everyone at Children’s Heartbeat Trust xx



Friday, December 12th, 2014

ChristmasCrackers x2F (1)         Infographic


We want you to share the campaign and our crackers with all your friends and family to help us raise awareness, and we have made it really easy!  Above is an infographic for you to share on facebook and twitter!


Tuesday, December 9th, 2014

We have come up with Five Christmas Crackers we are asking heart families to do to help us continue to fight for a strong cardiology service in Belfast, after the news that children’s heart surgery will move to Dublin. We will reveal the five over the next 2 weeks, but below is Christmas Cracker no.1!

Send your local MLA’s a message about how important a strong cardiology service in Belfast is for your heart child and family. It’s really easy – go to and type in your postcode. This will bring you to a page where you can contact all your local representatives.

All you need to do is tell them

  • Who you are and about your heart child and family.
  • Say that the Department of Health are currently holding public consultation about the ‘Delivery of High Quality Congenital Cardiac Services’ that you expect your MLA’s to be engaging with and responding to this consultation as your representatives in Government.
  • Tell them that although children’s heart surgery will move to Dublin, it is crucial that a strong cardiology service is maintained and developed in Belfast, and across Northern Ireland.
  • Explain exactly how important a strong cardiology service in Clark Clinic and the Royal Belfast Hospital for Sick Children is for your child’s ongoing care and treatment
  • Let them know that the cardiology service in Belfast must be invested in financially to ensure that children’s heart services in Northern Ireland are not weakened after losing surgery.
  • Finish off by highlighting that they need to support your family by calling for a specific Children’s Heart Centre, dedicated to providing world class heart services for local babies and children with heart disease.

ChristmasCrackers x1F

Charity Guidelines for Consultation on IWG Recommendations

Saturday, November 22nd, 2014



The Department of Health is currently consulting on the International Working Group’s Recommended Future Model for delivering Congenital Cardiac Services.

In order to encourage and help heart families across Northern Ireland to respond to this consultation, the Children’s Heartbeat Trust have produced guidelines.  These guidelines are not intended to replace your own responses, but to offer suggestions about areas for consideration to aid your response.

You can download the guidelines at Consultation Guidelines or we can email or post you out a copy.  Simply email us at

It is really important that as many people as possible reply to this consultation so we can make sure that the Department are fully aware of exactly what is needed to be put in place if Belfast is to be a strong cardiology centre and offer the best care and treatment for heart children in Northern Ireland.

The consultation document and response form can be found on the Department of Health’s website at

Also the Department have organised six public consultation events taking place across Northern Ireland.  Each event runs from 7pm – 9pm.  These are another crucial way to get your voice heard and the right service in place.

  • Craigavon on Wednesday 18 November (Seagoe Hotel)
  • Newry on Wednesday 26 November (Canal Court Hotel);
  • Belfast on Monday 1 December 2014 (Riddell Hall, Stranmillis);
  • Ballymena on Wednesday 3 December 2014 (Adair Arms Hotel);
  • Londonderry on Monday 15 December (City Hotel); and in
  • Enniskillen on Tuesday 6 January (Killyhevlin Hotel).

If you have any queries with the consultation please contact Sarah on 07584 164815 or email



Clark Clinic Paediatric Cardiologists & Heart families meeting – overview

Wednesday, November 19th, 2014

Overview of meeting with Consultant Paediatric Cardiologists and Heart families

Dr Frank Casey and Dr Brian Grant met with heart parents and families at The Elk in Toomebridge on 17.11.14 to respond to questions and concerns about the upcoming changes to the paediatric cardiac services in Belfast. Dr Craig and Dr Sands unfortunately were unable to make it and sent their apologies.


Clark Clinic

Dr Casey and Dr Grant both assured parents and families that Clark Clinic and the quality of cardiology care currently offered would remain to treat babies, children and young people with heart disease.

Emergencies and ECMO

One of the first issues that arose was that about how emergencies would be treated once surgery was discontinued in Belfast. Dr Casey responded that the clinical team would be able to take the first non-surgical steps to stabilise a child and then the child would be transported to Dublin via blue light, likely with a cardiologist in the ambulance with the patient.   Dr Casey noted that one of the key elements to help deal with emergencies would be the ability to place the patient on ECMO (Extracorporeal membrane oxygenation) to travel down to Dublin. The paediatric cardiologists will have to make a decision on what the best option to treat the critically ill child is.

Dublin – capacity and ability

Questions were asked about the likelihood of Dublin being able to provide surgery for children from Northern Ireland within the 18 – 24 month timescale and what the surgical service in Dublin was like. Dr Casey said that the Clark Clinic paediatric cardiologists were very hopeful that this timeframe was plausible and that in the interim period Dublin would begin to ramp up its provision for children from N.Ireland, dealing with emergencies and taking on the more urgent surgical cases over the timeframe. Dr Grant agreed, adding that there were no questions about the skills of the Dublin surgical team – that they were held in the highest regard and members of the team were world renowned for their skills and expertise. Dr Grant also noted that the plan was for patients to have their pre and post-surgical care in Belfast, only being transferred to Dublin by road when needed.

The Future

Belfast is capable of delivering a world class non-surgical service, but both Dr’s Grant and Casey emphasised the important role that the charity and heart families will need to play in order to secure this and thanked them for their strong support and efforts to date, which saved the surgical service being transferred to England in the long term.

The aim is to have a standalone Children’s Heart Centre where all the paediatric cardiology services would be housed. Belfast is already a world leader in areas such as research and telemedicine and it’s important that this continues. What is crucial is further investment in the service, not only in a centre but in staff – particularly cardiac physiologists and specialist nurses. This development and strengthening of the service will also help attract the highest calibre of doctors, nurses and team members in the future. The cardiologists have put forward a proposal to the Minister of Health outlining exactly what they need.

Sarah from the charity urged all the heart parents and families to engage with the current consultation to respond and make these points. Children’s Heartbeat Trust have drawn up guidelines to help families respond. Sarah emphasised how important it is for heart families to keep the pressure on the Minister and politicians to deliver on this and that the charity will be putting in place a range of methods for families to use.  Keep an eye on our website and facebook pages for updates!


It was really great to see such a large turn out of parents and families for this meeting and the overwhelming feeling at the end was one of being reassured about what the future holds after hearing from the cardiologists and the need to refocus on  a world class children’s heart centre in Belfast.  We would like to say a special thank you to Dr Casey and Dr Grant for giving up their time to speak to heart families and take questions – it was very much appreciated by all that attended.


Dr Grant and Dr Casey with Sarah from the charity at a meeting of the cardiologists with heart families.

Dr Grant and Dr Casey with Sarah from the charity at a meeting of the cardiologists with heart families.

Department of Health public consultation events on IWG recommendations – dates & venues

Thursday, November 13th, 2014

consultation image


Health Minister, Jim Wells, has announced a series of public consultation meetings on the International Working Group’s recommendations on the future model for congenital cardiac services.

The first meeting will be held on Wednesday 19 November 2014 from 7pm to 9pm in the Seagoe Hotel, 22 Upper Church Lane, Craigavon.

The Minister said: “On 3 November my Department launched the public consultation on the IWG’s recommendations which will run until Friday 23 January 2015. We are now embarking on a series of six public meetings across Northern Ireland to hear directly the views of patients, families and other stakeholders on the all-island service model recommended by the IWG.

“I would urge all who have an interest in the future of this vital service to come forward and put their questions directly to the Department and express their views before I make my decision on whether to approve the IWG’s recommendations.”

Further meetings will be held in:

  • Newry on Wednesday 26 November (Canal Court Hotel);
  • Belfast on Monday 1 December 2014 (Riddell Hall, Stranmillis);
  • Ballymena on Wednesday 3 December 2014 (Adair Arms Hotel);
  • Londonderry on Monday 15 December (City Hotel); and in
  • Enniskillen on Tuesday 6 January (Killyhevlin Hotel).

All meetings will start at 7pm and run until 9pm

Children’s Heartbeat Trust will be attending each of these and would encourage all our parents, families and other affected parties to attend and engage. We will be issuing guidelines next week to help with filling in the paper consultation as well.

You can read the consultation document at


Katie’s Charity Ball – Seagoe Hotel, Portadown – 22nd August

Wednesday, November 12th, 2014

Katie ball

Pig Racing – 25th July – Larne Rugby Club

Wednesday, November 12th, 2014

Pig racing