Archive for August, 2012
Minutes of Working Group Mtg 10.8.12
Tuesday, 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
Wednesday, 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
Monday, 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;
http://www.uup.org/index.php/2011-11-17-14-12-35/news/1037-childrens-heart-surgery-services-must-be-retained-in-northern-ireland-and-not-targeted-for-cash-saving-mccallister.html
http://www.sinnfein.ie/contents/23904#.UBpn7aZpg4s.twitter
http://www.sdlp.ie/index.php/newsroom_media/newsarticle/mcdonnell_vulnerable_infants_deserve_better
http://allianceparty.org/article/2012/006634/mccarthy-disappointment-by-loss-of-children-s-congenital-heart-services-in-northern-ireland
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
Thursday, 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
Save_Our_Surgery_Letter
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
Wednesday, August 1st, 2012
CHILDREN’S HEARTBEAT TRUST STATEMENT ON REVIEW OF SERVICES
“REPORT SIGNPOSTS CLOSURE OF BELFAST SERVICE”
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.”