HSC Board Meeting – PCCS Recommendation

April 22nd, 2013


On Thursday 25 April the HSC Board are holding a public meeting at which the recommendation from the PCCS working group (on which we sit) about the future of children’s heart surgery in N.Ireland will be discussed and up for approval before being put forward to the Minister of Health. This is a public meeting – if you would like to attend please email us at info@childrensheartbeattrust.org  so we can forward on a rough idea of no’s to the organisers. Thanks, Sarah

Date: Thursday 25th April 2013
Time: 10.00 am
Venue: Grosvenor Hall, Belfast Central Mission, 5 Glengall Street, Belfast BT12 5AD

Wear Your Heart on Your Sleeve 2013

April 18th, 2013

Friday 17 May is our annual ‘Wear Your Heart on Your Sleeve’ Day. Why not organise a coffee morning, bun sale or wear red to help us celebrate the day and raise funds for children with heart disease. Our wonderful heart badges will be on sale in all Semichem stores in the weeks before, and if you would like to take a box (as pictured) to sell in your local shop/ bar just let us know! IKEA are also getting involved that weekend and we will be running a raffle and heart arts and crafts in store on the Saturday & Sunday! Either post below or email info@childrensheartbeattrust for posters/ badges etc.



MLA Pledge of support for children’s heart surgery in Northern Ireland

March 28th, 2013


Each MLA in Stormont has been asked to sign up to the below pledge

“The safety of children and adults in Northern Ireland relies on continued congenital heart surgery at the Royal Victoria Hospital. I pledge to ensure that this world-class service continues and that children here can avail of the best surgical services in Belfast, Dublin and across centres in Britain. I will vote against any move to remove this surgery from Belfast”

To see which MLA’ s have committed to signing the pledge as of 28th March 2013 scroll down to the end of the post.

What we need YOU to do is to email, write or call on any of YOUR local MLA’s who haven’t signed up to the pledge. Explain to them first hand exactly what the service means to you as a local family and as local voters and how important it is they represent you and your family by signing this pledge.  You can find out who your local MLA’s are at www.writetothem.com.

On Monday 8 April the MLA’s will have the opportunity to sign up to the pledge in person in the Great Hall at Stormont from 11 – 2pm. If you and your family want to call up during this time to Stormont as well, that would be fantastic – just let Sarah know (email sarah@childrensheartbeattrust.org/ call 07584 164 815) and make sure you let your local MLA know what time you will be there at too!!

For the full updated list of all the MLA’s who signed at the event at Stormont please go to the Home Page and News Feed.


Health Minister underlines commitment to retaining children’s heart surgery in Belfast

March 20th, 2013

Speaking following today’s health committee meeting at Parliament Buildings, at which Health Minister Edwin Poots underlined his commitment to retaining children’s heart surgery in Belfast, Children’s Heartbeat Trust Executive Officer Sarah Quinlan said:

Children’s Heartbeat Trust welcome the Health Minister’s comments today that he rejected any proposals which were against the Health Committee and the wider community’s wishes concerning the future of children’s heart surgery. The Health Committee, parents and clinicians in Northern Ireland all agree that the best way to ensure the safety of children is to develop and formalise an all-island network. This would see Belfast and Dublin work together, liaising with counterparts in Britain as appropriate.

Mr Poots’ position follows that of his GB counterpart Jeremy Hunt who has ordered an independent review of the process restructuring children’s heart surgical services in England and Wales, and Mrs Justice Nichola Davies who found serious faults with that process only last week.

A report of the Health Committee’s meeting can be found at;


Children’s MRI Scanner Appeal Gala Ball – 12 April 2013

February 22nd, 2013


Post Consultation Document

February 22nd, 2013

Below is correspondance from HSCB Head of Commissiong, Dean Sullivan

CONSULTATION UPDATE: Below is an email from Dean Sullivan at the HSCB about the PCCS Consultation;
Dear Stakeholder, Re: Consultation on the Future Commissioning of Paediatric Cardiac Surgery and Interventional Cardiology for the population of Northern Ireland
At the start of the consultation process, the PCCS Working Group, which consists of clinicians, commissioners, parents of children with heart disease and parent group representatives, gave an undertaking to keep stakeholders informed of key stages in the process. A post consultation document was developed by the PCCS Working Group and approved on Thursday 14th February 2013 at a public meeting of the HSC Board.
The post consultation document and a press release which provides an overview of the process to date is available at: http://www.hscboard.hscni.net/news/Paediatric_Congenital_Cardiac_Services.html
This framework will now be submitted to the Minister for Health, Social Care and Public Safety (DHSSPS) for his consideration. When the framework has been agreed by the Minister, it will then be applied to each of the options outlined in the post consultation document, with the aim of identifying a preferred way forward for the provision of services for children with heart disease in Northern Ireland. The Minister is expected to make a decision within coming months.
Thank for your interest in the future commissioning of paediatric cardiac surgical services.

Happy Valentine’s – Please send & share our special HANDS UP Valentine’s Day card!

February 13th, 2013

Heart Tattoo Day; Sat 16 Feb; Studio 76 L/Derry

February 13th, 2013
Tattoo Studio 76 are hosting a charity day to raise money for “The Children’s Heartbeat Trust”.
We are going to be doing tattoo’s of hearts for the whole …day costing only £30 of which £25 will go directly to the charity We’re hoping to do at least 100 hearts that day and with everyone who gets one done will be entered into a raffle, with the chance one of many prizes. The winners will be decided at the end of the day.
 Going to be a great day with live music, special guests, representative from the charity and lots of people getting tattoos!!

Professional Organisations haven’t endorsed standards for Northern Ireland

February 13th, 2013


Below is our statement regarding the news that Professional Bodies have not endorsed Safe & Sustainable for Northern Ireland.


Families with children born with congenital heart disease have reacted with dismay and disappointment following the discovery that the Safe & Sustainable guidelines included in the current consultation on the future of children’s heart surgery have not been endorsed by relevant professional bodies for the Northern Ireland area. This is despite the fact that it states in public consultation documents that the standards are “endorsed by professional bodies.”

Children’s Heartbeat Trust Executive Officer Sarah Quinlan said  “The guidelines upon which the Ian Kennedy report based their recommendations about the future of children’s heart surgery here and which have formed the basis of the current consultation, have not been endorsed by any medical professional bodies for Northern Ireland. Late last year we wrote to the Royal College of Paediatrics and Child Health, Royal College of Surgeons, Paediatric Intensive Care Society, Royal College of Obstetricians and Gynaecologists and the Society for Cardiothoracic Surgery in Great Britain and Ireland. All confirmed that the guidelines are not endorsed as best practice in Northern Ireland, and that support given for the guidelines was for England & Wales only. One organisation, the Royal College of Obstetricians and Gynaecologists, who represent doctors treating pregnant mothers and newborn babies, indicated that they have not endorsed the guidelines for any UK region.

“The Children’s Heartbeat Trust and clinicians have placed the development of a paediatric heart service which supports the safety of all patients, children, teenagers and adults, including the most vulnerable, at the centre of our work in the current consultation. Key to this is the provision of a safe and accessible service. The fact that current standards specifically set up to provide services in England and Wales have not in fact been endorsed for Northern Ireland continues to undermine the appropriateness of their use in determining the future for our service.  The devolved government in Scotland recognised this, and rejected Kennedy’s proposals for Scotland.

“On a range of issues, including abortion and care for the elderly, our Health Minister has made it clear that different circumstances apply to Northern Ireland, and that he will not impose a one-size-fits-all approach. The importance of these differing circumstances has also been clearly understood by all medical bodies, none of whom have endorsed these guidelines for Northern Ireland,” added Sarah.

The consultation document released last year included a number of references to Safe & Sustainable guidelines and the fact they were “endorsed by professional bodies”. Our correspondence with the bodies makes it clear that a number of them medical bodies did not endorse, consider or envisage the application of the standards in a Northern Ireland context. These include:

  • Society for Cardiothoracic Surgery in Great Britain and Ireland which stated: “I can assure you our endorsement as a society applied to England and Wales.”
  • Royal College of Surgeons which stated: “The College has not given consideration to the way in which Safe and Sustainable guidelines – originally developed for England & Wales – apply to Northern Ireland.
  • Royal College of Obstetricians and Gynaecologists which stated: “I am not aware      of any request for endorsement of any guidelines developed during the Safe and Sustainable process in the UK.”
  • Paediatric Intensive Care Society which stated: “The Safe and Sustainable process was brought about to address concerns in England & Wales.”
  • Royal College of Paediatrics and Child Health which stated: “Clearly their application in NI would have to be considered in light of practicalities related to geography and location.”

Similar proposals made in England by Sir Ian Kennedy, which would see three units close, have been suspended following the decision of the UK Secretary of State for Health, Jeremy Hunt MP, to order an independent review. This review is currently being carried out by renowned keyhole surgery pioneer Lord Ribeiro and is due to report at the end of March.

Children treated in Belfast enjoy extremely high standards of care, endorsed by a Royal College of Surgeons report only last July and managed by clinicians and experts who work closely with colleagues in Dublin and Britain. These links should be strengthened and enhanced with agreed protocols, safeguarding the service for the future.

”We support the Minister’s undertaking that children’s safety is his number one priority in this process and urge him to apply criteria developed for Northern Ireland to patients in Northern Ireland. A one-size-fits all approach does not and will not work,” added Sarah.


Thanks to everyone who supported our HANDS UP Campaign March & Rally!

February 13th, 2013

Hundreds of toddlers, children and families from across Northern Ireland took to the streets on Sat 2 Feb to safeguard the future provision of children’s heart surgery at the Royal Belfast Hospital for Sick Children. The protest assembled outside the hospital where hundreds of children have undergone treatment for congenital heart disease, before marching to the Health & Social Care Board offices at Linenhall Street in the City Centre.

Congenital heart disease is the most common birth defect in Northern Ireland with some 250 births per year, and just under 200 operations and interventions on babies, teenagers, children and adults taking place here each year

The was march was a clear demonstration to the Health Service commissioners that the future safety of children in Northern Ireland relies on the maintenance of heart surgery at the Children’s Hospital in Belfast. Any steps to remove emergency and planned surgery to England would place lives at risk as well as placing immeasurable emotional and financial strain on families.

The Royal College of Surgeons have stated that children’s heart surgery in Northern Ireland is safe. Despite this, Sir Ian Kennedy’s team were invited to Belfast last summer and made a confusing finding that surgery was safe but not sustainable. Findings made by the same team for England & Wales made have been stalled by the UK Minister, meaning that today Northern Irish children here are the only patients anywhere in the UK subject to Sir Ian Kennedy’s recommendations.

Children’s Heartbeat Trust are delighted that the Minister has expressed his wishes that a solution should be found which will see some surgery retained in Northern Ireland. This supports the views of clinical experts, parents and children and we support this call.

The message from all who took part in the March to the Health Service commissioners is that their focus should be to ensure this happens through the strengthening of provision in Belfast as part of an all-Ireland surgical network.