Consultation Announced

September 28th, 2012

On Tuesday 25th September the Minister of Health Mr Edwin Poots announced the opening of the public consultation into paediatric congenital cardiac services.  This followed an Assembly debate in which the Minister assured MLA’s that the “future service model for Paediatric Congenital Cardiac Services (PCCS) will prioritise the needs of children as he launched a consultation document on the way forward.” He also assured the Assembly that he would be looking into an all island option for the future of the services and continue discussions on this matter with the Minister of Health in the south, Dr James O Reilly.

The transcript of this debate can be found at  

The consultation documents can be found at and the Health & Social Care Board have asked us to share this letter with all our members PCCS Consultation Letter 26Sep2012 Parents and Families.  Please note that if you would like to attend the focus groups HSCB would like to have an idea of numbers by Friday 12 October so let them know by then if possible.
The consultation closes on Friday 21 December.  We will be issuing an overview and guidelines in the next week for members to read alongside the document.  Your response is essential to the success of the campaign!

The HANDS UP campaign storms Stormont!

September 27th, 2012


The McLean boys from Omagh with Health Minister Mr Edwin Poots in Stormont!

 On Monday 24 September the first ever Teddy Bear’s picnic in the Senate Chamber at Parliament Buildings saw over two hundred people put their Hands up for Local Kids’ Heart Surgery.

 The event, which is the sixth of eleven public meetings to take place across Northern Ireland, kicked-off inside Parliament Buildings in the company of campaign mascot, Clark the bear. Clark is named after the home of paediatric cardiology in Northern Ireland – the Royal Victoria Hospital for Sick Children’s Clark Clinic.  The Teddy Bear’s picnic outside also saw a petition with the names of over 12,000 people handed to Minister Edwin Poots MLA & Sue Ramsay MLA, Chair of the Health, Social Services & Public Safety Committee. This followed the presentation of a Facebook petition with over 50,000 signatures two weeks ago by Derry teenager Eoin Taylor.

The event followed the Minister of Health, Social Services and Public Safety, Edwin Poots’ announcement on the 1st August that the future of paediatric heart surgery services at Royal Belfast Hospital for Sick Children is under review following a report written by Sir Ian Kennedy and his team.

Children’s Heartbeat Trust Executive Office Sarah Quinlan, said: “Congenital heart disease is the most common birth defect in Northern Ireland and it is unimaginable that surgery for babies and children here could end. Any proposal which would see children forced to fly to England for treatment ignores medical evidence on the risk of transport, fails to meet the required 3-hour limit for journey-time to a specialist centre and jeopardises the right to life for any baby born here with a heart defect.

 “The solution is an enhanced service in Belfast as part of an all-Island network with Dublin and continued links with hospitals in Britain. This will ensure that all babies and children can enjoy the safe and world-class surgery provided at the Royal Belfast Hospital for Sick Children, as part of an all island surgical network. Children from Northern Ireland have travelled to Dublin as a matter of routine for surgery over the last ten years and this arrangement should now be formalised at Ministerial and departmental level. It is imperative that these steps are taken following the consultation to safeguard the health of babies, children, teenagers and adults.

 “Across Northern Ireland we have held a series of public meetings and the strength of feeling against any plans to shut surgery has been immense. The emotional and financial stress of travelling to England has already been outlined by a number of families who have had to make that journey. Imposing this journey on upwards of 150 new families per year, as well the practical consequences for the thousands more existing Clark Clinic patients is simply not an option,” concluded Sarah.

Teddy-Bears Picnic at Stormont!

September 19th, 2012
Information re: Teddy-Bears Picnic

Date: Monday 24 September 2012
Time: Arrive for 11.30am/ kick off from 12 noon
Note: Car-parking will be limited as Monday is one of the busiest days at Stormont as all MLA’s are in attendance. Please bear in mind that may have to park on side streets around Stormont and give enough time for that.

What we need you to bring:
Yourselves, family members, supporters, friends and of course any children or young people that can come along!
Teddy-bears – as many as you can please!
Make your own Placards – feel free to share placard ideas below : )

Teddy-bears picnic Event
Tea, coffee and treats will be available courtesy of Barista Coffee, who are long term supporters of the charity – thanks very much Barista! Additionally, we will have juice etc for the kids. Also at the picnic, you can pick up your very own HANDS UP Campaign t-shirt.

With children’s entertainment, speeches, and music this Teddy-bears Picnic is going to be buzzing so get your placards ready and come along to make your voices heard on the steps of Stormont!

Estimated Finish time: 1pm

Campaign Update – Meeting with the Health Minister

September 18th, 2012
On Monday 17th Sept we met with the Health Minister Mr Edwin Poots in Parliament Buildings, Stormont. Dr Connor Mulholland, the charity’s Chairperson and retired paediatric cardiologist with Clark Clinic, highlighted the clinical concerns and risks of moving our surgical services. Parents shared their stories of having life saving emergency procedures in Belfast, having to travel to Birmingham and the stresses and strain that places on a family, and the fear of knowing that a child who received surgery in Belfast will need further surgery in the future and the uncertainty over where that might take place.
It was a positive meeting with the Minister recognising our concerns and stating that his preferred solution would be an cross – island one, however his decision would follow the consultation and its findings in Oct & Nov. So we need to keep highlighting the issues, keep contacting your local politicians and keep speaking up. Our aim is to protect and enhance our safe local children’s heart surgical services and we need to make sure that we don’t leave any stone unturned in doing so!
Please attend one of our public meetings across the country or find out how you can get involved by visiting

Hands Up campaign – developments at Stormont

September 12th, 2012

  We welcome the developments in Stormont yesterday and today about the future of       congenital heart surgical services.  Today the Health Committee agreed the below motion  to be debated in the Assembly

That this Assembly calls on the Minister of Health, Social Services and Public Safety to reassure parents that the future service model for Paediatric Congenital Cardiac Services will prioritise the needs of their children, and further calls on the Minister to fully explore an all-island solution with his counterpart Dr James Reilly’

This motion will be due for debate on either Monday 24 September (our demonstration day at Stormont!) or Tuesday 25 September.

The below link shows the minister answering questions in Stormont yesterday  from MLA’s Mr Buchanan, Mr Boylan, Mr Eastwood, Dr McDonnell and Mr McCallister.  If you’re local MLA hasn’t written to the Minister of Health about this important issue then write, email or call them and ask them why not! The piece starts at 13.27 – 17.21 mins 

Also read the transcript of the questions and answers at

Questions to Minister_11 Sept

HANDS UP Campaign Public Meetings across NI

September 10th, 2012

Minutes of Working Group Mtg 10.8.12

August 21st, 2012

Below are the confirmed and agreed minutes of the first Paediatric Congenital Cardiac Service working group meeting which took place on Friday 10 August 2012.

The Health & Social Care Board plan to place the minutes and all documents relating to the group on their home page. Once this happens we will post up that link which will allow for easier viewing of the minutes and other agreed documents.

You can observe at the Paediatric Congenital Cardiac Services Working Group

August 15th, 2012

The Health & Social Care Board have stated that they can accommodate a small number of observers to attend the Working Group Meetings which are considering the future of paediatric congenital cardiac services in Northern Ireland.

If you would like to be put forward in the capacity as an observer to attend the upcoming meetings (currently scheduled for the next 3 Fridays from 12 – 2pm at the HSCB headquarters, Linenhall St, Belfast) please let me know – email info@childrensheartbeattrust or call 07584 164 815.

Although an observer will not be able to say anything during the meeting itself, it is a good opportunity to be engaged, and of course to raise any noted concerns/ issues with the charity after the meeting which we can look to address.

Political Support for our Campaign to save children’s heart surgery in NI

August 6th, 2012

Over the past months we have been met with the health spokesperson of each of the 5 political parties in Northern Ireland; Jim Wells (DUP), Conal McDevitt (SDLP), Sue Ramsey (Sinn Fein), John McAllister (UUP) and Kieran McCarthy (Alliance).

We wanted to let them know about the potential outcomes of the Safe & Sustainable report and exactly how these might impact on families affected by CHD in Northern Ireland.

We highlighted how detrimental any threat to cardiac surgical services might be both emotionally and practically for our families and that there were other options available when looking at the issue of sustainability. It is reassuring and heartening to see the statements below from the last few days from Sinn Fein, UUP, SDLP and Alliance Party supporting our position. Additionally, below is a Facebook post from Health Minister Edwin Poots which we also welcome.

Please cut and paste the below links to read each statement;

Health Minister Edwin Poots Facebook post

“On Tuesday I issued a press release indicating that the findings of team of experts who were appointed to review paediatric coronary care across the UK. It has recommended that surgery in Belfast should cease, it was not requested by myself or the DHSSPS, but is a report that cannot be lightly dismissed or ignored given the standing and expertise of the individuals in this field. I should further stress that this is not an issue about finance it is about safety, standards and outcomes.

Since I became aware of the report I have met the cardiologists from the RBHSC who have raised a number of concerns related to the report. I consider them to be men of considerable expertise and integrity and am in agreement with them on these issues. I have further met my ministerial counterpart in the RoI and have further written to him on the subject.

Ideally I would like to see the retention of surgery at the RBHSC and if we are to achieve that it will almost certainly require a closer working relationship with with the childrens hospital in Dublin.

What is absolutely necessary is that we produce a robust plan as to how we can maintain a level of service that can provide safety and sustainability for the future. I too must have confidence that any decisions I take do not put at risk children’s lives, local is not always best, but neither is transporting very sick children hundreds of miles. It is about finding the best solution for our particular needs.”

Save our Surgery Campaign

August 2nd, 2012

We need all of our parents, families, members and supporters to get involved with our campaign to save children’s heart surgery in Northern Ireland.

We are implementing the first stages of this campaign now;

1. Letter to your local politicians

They are elected into their position by you and should be working for you and representing your concerns. Find all your local representatives by clicking on and entering your postcode. We have created a template letter for you to send which outlines the issues. Please adapt this to your own personal circumstances as required. The letter can be downloaded at

This is a really effective way to make sure that our politicians work for us and support us in this important matter.

2. Online Petition

We have an online petition for all our supporters to sign at

Please sign and share with all your friends and family!

3. Public Meetings

We will be holding public meetings throughout Northern Ireland over the  next month.  Please keep an eye here for updates on when and where.