Kentucky Derby Night; McBride’s on the Square Comber; Fri 9 Nov

November 1st, 2012

White Collar Boxing; Europa Hotel; Thursday 8 November

November 1st, 2012

Key Issue to highlight for your local politicians

October 18th, 2012

We need everyone to keep writing and emailing their local Councillors, MLA’s, MP’s, Minister of Health and First & Deputy First Minister, about our HANDS UP Campaign to protect and enhance children’s heart surgery in Northern Ireland.  To help you do this we will be posting up key issues for you to highlight every 10 days/ 2 weeks over the course of the campaign. 

An easy way to contact all your local politicians is at but don’t forget that giving them a call or popping into your local representatives office and having a face to face chat is one of the most effective ways to make your point!

Below is the first key issue – also remember to include why this campaign and the protection of children’s heart surgical services are so important to you and your family.


There are serious inconsistencies in the timescales and processes that were followed in the review of paediatric congenital cardiac services in Northern Ireland, against the same review of services in England.

(i) In England and Wales, the Safe & Sustainable review team gave clinical centres one year’s notice of the process, and three months to prepare and complete the relevant documentation ahead of the team’s notice.

In Northern Ireland, clinicians from Clark Clinic (the only centre for paediatric cardiology in N.I.) at the Royal Belfast Hospital for Sick Children were actually informed of the review by the Children’s Heartbeat Trust (Northern Ireland’s children’s heart charity) and upon confirmation from the Commissioners, were given FIVE WORKING DAYS to complete the extensive documentation.  Despite reassurance from the Public Health Agency and Commissioners that due to this unrealistic and constrained timeline, the process would be limited and focussed on specific questions, this was not the reality.  The Safe & Sustainable report was constructed in exactly the same way as for other centres in England & Wales.


England & Wales:             1 year’s notice with 3 months to complete documentation

Northern Ireland:            No notice and 5 working days to complete documentation

(ii) In England and Wales, the Safe & Sustainable review held an extensive consultation with parents and families and stakeholders which started in 2009 and continued through engagement and public consultation until 2012. 

In Northern Ireland, parents and families were given one hour to meet with the Safe & Sustainable review panel during their visit, with no prior consultation or engagement.


England & Wales:             Multiple consultations with different groups over a 2 year period.

Northern Ireland:            One consultation of 1 hour


Why such different approaches?

Why was Northern Ireland not afforded the same timelines, preparation, or consultation and engagement as England and Wales?


3 Marathons; 3 Countries; 3 Days

October 11th, 2012

3 Marathons; 3 Countries; 3Days

Four runners – Peter Ferris Irish marathon record holder with 390 marathons done, John Kew 2nd in UK with 690 marathons done, Harold Rielly 110 marathons done and Richard McLernon are attempting to run 3 marathons in 3 countries in 3 consecutive days, this will start with the Snowdonia marathon in Wales on the sat 27/10 then next day Preston marathon and finish with the Dublin marathon the following day.

You can sponsor this fantastic feat at

Conference 2012 – At the Heart of the Matter

October 8th, 2012

Bookings now for our 2012 At the Heart of the Matter Conference taking place on Saturday 24 November at the Lough Neagh Discovery Centre, Craigavon. 

With speakers including  Cardiothoracic surgeon Mr Lars Nolke, Head of Paediatric Cardiology at Clark Clinic Dr Frank Casey , Clinical Psychologist Dr Nicola Doherty and our new Adult Congenital Cardiologist for N.I Dr Chris Lockhart, the conference is not to be missed!

To make sure of your place, register now by downloading the registration form  at Parent’s Conference 2012 – Registration,  email, or call 07584 164 815 to get a form posted out. 

 The Registration Fee is £10pp which includes lunch and refreshments.  As last year we will be running an early bird rate of £8 pp or £15 for two if you register before Monday 29 October

Last year’s conference got great feedback from the parents who came along so make sure this year you don’t miss out!

Jenny Bristow Food & Fashion; 4 Oct 2012; Galgorm Manor, Ballymena

October 2nd, 2012

Cody’s Challenge; 21 October 2012 ; Orchard County Cycling Club

October 2nd, 2012

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