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 www.writetothem.com 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.

Service must be retained in Belfast

August 1st, 2012



Parents of children with congenital heart disease, along with the Children’s Heartbeat Trust, today met with officials from the Public Health Agency following the publication of the Safe & Sustainable Review into pediatric congenital heart services in Northern Ireland. Sarah Quinlan, Executive Officer, Children’s Heartbeat Trust said that the report signals the closure of the Belfast service, and that must be strenuously resisted.

“The report and the accompanying statement from the Health Minister introduces uncertainty into the future provision of congenital heart disease services locally. The review team has concluded that pediatric cardiac surgery is not sustainable in Belfast and should cease. This is a very worrying development for our parents.

“Removing this surgery in Belfast will mean that very ill babies, children and their families will forced to travel hundreds of miles for specialist treatment as well as surgery,” she added. “It is imperative that the local service is retained.”

On average, 120 pediatric heart surgeries and 40 interventional catheterizations for congenital heart disease are performed in Northern Ireland each year.

“We are calling on Minister Edwin Poots to ensure the continued provision of heart surgery for babies and children at The Royal Belfast Hospital for Sick Children in Belfast. This is the time for local Ministers to take local decisions and resist a ‘one size fits all’ UK approach.

“The demographic model used by the Safe and Sustainable team is based on England and Wales, which has a population of over 60m. The report is also contradictory in places as on the one hand it recognizes that there are no safety concerns over the Belfast service but then says that there is a potential safety risk within 6 months. This is alarmist and contradictory.

“There are options available which can safeguard the provision of heart surgery for children and babies in Northern Ireland, such as an all-Ireland network which retains a service in Belfast. We welcome the fact that parents and patients representatives will be represented on the working group which is due to report in 6 months. Our overriding position is that it is imperative that children’s heart surgery continues to be delivered at the hospital in Belfast.”

‘No fault found’ in Surgery for Tetralogy of Fallot between 2007 – 2010 says Royal College of Surgeons

July 19th, 2012

A letter from the Royal College of Surgeons to the Medical Director of the Belfast Trust referencing: Initial Feedback from the Royal College of Surgeons invited review team, has stated that they can

“confirm that with reference to surgery for Tetralogy of Fallot between 1st April 2007 – 31st March 2010, the review team noted that the three deaths that were reviewed occurred over three years in children who already had other medical conditions, which increased the risks of surgery. From the information reviewed and the interviews held, no fault could be found in the surgery, which was carried out to a high standard. The review team also considered all cases during this time period and could find no cause for concern in the approach and performance of the surgeon concerned.”

We welcome this conclusion to the review into the three Tetralogy of Fallot deaths between 2007 – 2010. Our sympathies and thoughts remain with the families of the children who died following this surgery.

Children’s Heartbeat Trust has absolute confidence in the medical staff and services which support the treatment of children with congenital heart disease at the Royal Belfast Hospital for Sick Children. The clinical team at Clark Clinic provide an exceptionally high standard of pre and post operative care to both inpatients and outpatients as well as those requiring diagnosis and medical treatment.

As we await the report into overall paediatric cardiac services in Northern Ireland carried out by the Safe & Sustainable team in April, we hope that the report will accurately reflect the high standard of paediatric cardiac care offered to our families in Northern Ireland and recommend protecting and enhancing this service.

An estimated 120 paediatric cardiac surgeries are carried annually in the Royal Victoria Hospital, Belfast. The current surgical service for congenital heart disease is provided by two surgeons employed by the Belfast Trust with support where needed from two further surgeons based in Our Lady’s Hospital for Sick Children in Dublin. As has been the case for many years, children with very complex diagnoses are transferred mainly to Birmingham Children’s Hospital and to Our Lady’s in Dublin.

Cycle Challenge; Lap the Lough; 26 August

July 11th, 2012


Sign up and raise funds for the charity!

Swiss Alpine Davos Ultra Marathon; 28th July

July 11th, 2012

Swiss Alpine Davos Ultra Marathon,28th July; Jacqueline Toal will be travelling to Switzerland to undertake this marathon to raise money for Children’s Heartbeat Trust

Update re: Safe & Sustainable review

July 11th, 2012

The Health & Social Care Board have been in touch with the charity to let us know that they have received the report from the Safe & Sustainable review teams visit on 23 & 24 April and have forwarded to the Department of Health for consideration.

The publication date of the report has as yet not been agreed. We will keep you all updated on any progress with this.