Charity Guidelines for Consultation on IWG Recommendations

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

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

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

November 12th, 2014

Katie ball

Pig Racing – 25th July – Larne Rugby Club

November 12th, 2014

Pig racing

Meet with your Paediatric Cardiologist!

November 6th, 2014

17th Nov

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 no later than Thurs 13 November.

Thanks everyone, look forward to seeing you all there,

CHT Team!

17th Nov

Heart teenagers top of the agenda on the hill

November 6th, 2014


L-R Sarah Quinlan, Robin Swann MLA, Zoe Fleck, Dr Chris Lockhart and Lucy Allen

L-R Sarah Quinlan, Robin Swann MLA, Zoe Fleck, Dr Chris Lockhart and Lucy Allen

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.

Dr Chris Lockhart

Dr Chris Lockhart

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.”

Zoe Fleck and Lucy Allen

Zoe Fleck and Lucy Allen




Maybe Ga Ga concert – Saturday 8th November – The Wild Duck, Portglenone

October 31st, 2014

Big Breakfast – Friday 7th November – Lodge Hotel, Coleraine

October 31st, 2014

Teen Bowling Blitz!

October 30th, 2014

Bolwing Blitz

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;