Heart Tattoo Event; Sat 19 Oct; JJ Inc Newtownards

September 23rd, 2013

 

Heart Tattoo Event; Sat 19 Oct; JJ Inc Newtownards

In conjunction with JJ Inc, Newtownards, a Heart Tattoo Event is taking place on Saturday 19th October.

Come and get your heart tattoo for only £25!!

To book in call 02891 228 171 or visit JJ Inc’ Tattoo & Piercing at 44a Frances Street, Newtownards.

 

Contact: Joanne Black – 07738719577

Delegation meets Minister for Health Mr Edwin Poots

September 17th, 2013

HANDS UP Campaign Update:

The Minister of Health Edwin Poots yesterday met with a delegation from the Children’s Heartbeat Trust to discuss what was happening with children’s heart surgery in Belfast.

In a long and detailed meeting the charity raised concerns about the current restrictions being placed on paediatric heart surgery and the increasing number of families having to travel for their child’s treatment. We highlighted the number of successful children’s heart surgery networks currently working in country’s like Australia, Canada and the USA and how they should be used as a template for developing network surgical services with Dublin.

The Minister told the charity that he had recently met with his counterpart and officials in the Republic of Ireland and would ‘leave no stone unturned’ in the attempt to retain children’s heart surgery in Northern Ireland.

Children’s Heartbeat Trust noted that while the campaign has achieved much by stopping the move of children’s heart surgery to England, now the focus must be on securing a surgical network between Belfast and Dublin to best meet the needs of patients with CHD in Northern Ireland.

We will continue to campaign and lobby on your behalf to achieve this.

 

Hands Up Campaign – One year on…

September 9th, 2013

HANDS UP Campaign – One year on…

It has been over one year since the Minister of Health announced a review into children’s heart surgery, but we still have not had a final decision on the future of the service.  Families and patients have no indication where their child will receive this critical and life-saving treatment in the future.

It is critical that we stay active on the issue while the Minister is considering the decision. We need you to continue to contact your local MLAs, asking them what exactly they have done to push for a solution that guarantees safe, local treatment for your child and babies born in the future.

In April of this year the Minister of Health Mr Poots publicly stated that there are weaknesses with a Dublin only solution and that his preferred option would be a surgical network between Belfast and Dublin.

Yet, five months later, we are still waiting, families are still waiting, children with congenital heart defects are still waiting.

91 MLA’s, from all political parties, were eager to have their picture taken with heart families and sign their names to the charity’s pledge to protect children’s heart surgery in Northern Ireland; the question we need answers to now is how are they honouring this pledge and representing you and your family, as their constituents and the voters.

So please phone, email or call into your local MLA’s office and ask them this question.

‘What have you done to protect and enhance children’s heart surgery in Northern Ireland?’

‘What are you going to do in this Assembly term to make sure a North-South network is put in place for the benefit of children with congenital heart disease in Northern Ireland?’

We need our MLA’s to act for heart children and their families, by supporting paediatric cardiac surgery in Northern Ireland.

Find your area’s MLA’S at

www.writetothem.com

At the Heart of the Matter Parents Conference – 2 November 2013 – booking open!

August 26th, 2013

Our annual Parents Conference ‘At the Heart of the Matter’ is taking place on Saturday 2 November at Lough Neagh Discovery Centre. This is a really popular day, with specialists coming to speak from a wide variety of fields about congenital heart disease. To book your place, follow the link below and download the forms.

http://www.childrensheartbeattrust.org/family-support/parents-conference-2011-at-the-heart-of-the-matter/

Match Report – Belfast Telegraph’s charity cricket team take on the professionals!

August 23rd, 2013

On a typical cloudy summer Northern Ireland evening, a Donaghadee XI hosted a Belfast Telegraph XI in the 3rd annual charity T20 cricket game – this year in aid of The Children’s Heartbeat Trust

 Winning the toss, and choosing to bat, the Dee team managed to score a huge total of 189 all out just short of the 20 overs.

Richie Carson, Peter McIvor, Phil McNamara, Gavin Fraser and Roger Stubbings all scoring sizable runs in getting to the daunting total score.

Colin Maxwell, Andrew Armstrong, Hugh Watters and Mark Reilly all bowled well and picked up the wickets for the Bel Tel XI

 The Bel Tel team fell agonisingly short in their run chase ….. losing by ONLY 80 runs off their 20 overs.

Patrick Beatty, Marty Elliman, Patrick Beatty and John Devine were the mainstay of the Bel Tel innings scoring some runs.

While for the Dee team Brian McLawrence, Scott Carson, Steven Savage and the Brother’s Shaw (Trevor and Brian) took the spoils with the wickets .

 Throughout the game, “PartyDJNI” was able to provide a musical, and often entertaining, backdrop to the proceedings on the field

And Grace Neills kindly hosted the post-match festivities as both teams reflected on a highly enjoyable game

 Of course, Children’s Heartbeat were the real winners, accepting a donation of over £1000 from both teams.

Many thanks to all involved for donating and helping put this together. 

 

 

3 Day Sponsored Cycle; Monday 5 August; Sligo & Fermanagh

July 30th, 2013

Good Luck to Andrew Pattison and his dad (67) and 11 year old daughter who are taking part in a 3 days cycle starting next Monday, across County Sligo and Fermanagh aiming to cover around 40 kilometres/ day. Some of you might know Andrew from his involvement with the Home Monitoring project where he has been installing Clark Clinic’s home monitoring systems in families homes for the past 5 years.

In his own words Andrew said he wanted to support the charity and Clark Clinic because ‘I see on an almost weekly basis how families deal with really difficult circumstances and I see the difference the Clark Clink makes to their lives. I also know how much the Children’s Heartbeat trust helps the families involved, as well as funding important projects like the home monitoring system.

Andrew’s fundraising link is as below and if you seem him, his dad and his daughter cycling around give them a beep and a wave!!

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=TheBaldyBikers&faId=326236&isTeam=trues up to Andrew Pattison and his dad who are cycling

Really Tee’d Off Golf Day – Fri 30 August – Holywood Golf Club

June 26th, 2013

Really Tee’d Off Invitational Golf Day – Friday 30 August – Holywood Golf Club

PRICE £30 PER PLAYER

INCLUDES:- BACON ROLL, TEA/COFFEE ON ARRIVAL

ROUND OF GOLF

MEAL IN CLUBHOUSE AFTERWARDS

PRIZE GIVING, BALLOTS AND AUCTION TO BE HELD IN THE

EVENING FROM 7:30PM

 LIVE MUSIC FROM 2 TONE REVOLVER & AARON CRAIG

DISCO WITH DJ HENRY

 CONTACT: STUART CAMERON – SCAMERON72@GMAIL.COM

RAB TAYLOR – 07734 877 729

FOR MORE INFO & TEE TIMES.

 

Five Mediums Live – Wed 31 July

June 26th, 2013

5 Mediums Live in aid of The Childrens Heartbeat Trust, Weds 31st July 2013. 8-10pm Tickets Priced 10 Pounds and are only available from www.simon-mccreedy.co.uklimited tickets available get yours quick before they are sold out!

Hands Up Campaign – next steps – lobbying TD’s

June 19th, 2013

HANDS UP Campaign

 

Guidelines for communication with TDs. For the next stage of the campaign, we would like you to lobby TD’s from the bordering counties in the Republic of Ireland.  TD’s are the equivalent of our MLA’s for RoI. The most important thing to remember is that a template for shared border services already exists through cancer treatment at Altnagelvin Hospital. Children’s Heartbeat Trust and the Minister of Health Edwin Poots are both keen that an all-island surgical network emerges. By communicating and if possible, requesting a meeting with border TD’s we can make sure they are fully aware of all the issues (outlined below) which focus on standards of surgery, safety and sustainability. When emailing and writing to TDs, it is important to remember:

  1. They are not elected for any area within Northern Ireland, and do not represent any families or children currently impacted by the Northern Ireland review.
  1. While there are more TDs than MLAs, they represent many more people – busy offices mean they may not be as quick to respond as MLAs
  1. While many are familiar with cross-border issues, especially in Donegal with respect to the shared cancer facility, not all people you write to may be briefed on the issue, so include a little bit of background about the review in Northern Ireland and the Hands Up campaign.
  1. If it is feasible for you to attend a meeting with a TD, suggest a meeting either in the local office or if possible in Dublin – TDs are in Dublin every week and travelling to Dublin from certain areas in NI could be quicker and easier for you than travelling to their constituency offices.
  1. In your correspondence highlight why protecting children’s heart surgery in Northern Ireland is important for your child and your family.  Note your personal experiences and why you believe a network solution in partnership with Our Lady’s Hospital, Crumlin in Dublin is the best way forward.
  1. The charity will also be writing to seek meetings, please acknowledge this in your letter or email.  If you are requesting a meeting, please make it clear it is an additional meeting. More meetings ensure they know the issue has widespread support.
  1. You can also contact any local MLAs you’ve engaged with successfully, make them aware you’re now contacting TDs also, and see if they can offer support. Many border TDs know and work with NI MLAs, and in the case of Sinn Fein, are the same party.
  1. Be confident!   The campaign so far has made sure that surgery will not be shifted to England, and the Minister has publicly agreed with the charity on the importance of a Dublin/Belfast network in preference to a shift to Dublin. Make it clear that the issue you’re writing about HAS political support in Northern Ireland and from Southern Health Minister James Reilly who said he would be happy to explore options for Dublin AND Belfast.

Please also keep Sarah up-to-date on communication, letters and any meetings.   TD’s   There are nineteen border TDs, based in 5 border constituencies. All of these, with the exception of Louth, are closer to Belfast than Dublin, or include areas that are closer to Belfast than Dublin. The table below gives contact details for these TD’s      

 Border TDs Contact Details (1)

RBHSC now the only hospital where children’s heart surgery under threat

June 12th, 2013

 

Speaking following the announcement that the entire Safe & Sustainable process has been suspended by UK Secretary of State for Health, Children’s Heartbeat Trust Executive Officer Sarah Quinlan said:

“The HSC in Northern Ireland now has serious and important questions to answer about the decision to invite the Safe & Sustainable team to Northern Ireland to carry out a review of paediatric cardiac services here. Today’s news that the entire process in GB is now suspended, that planned closures of three surgical units in England will not take place and that a review should be co-ordinated with adult services vindicates the long-held view of local clinicians, medical staff and families that the Safe & Sustainable guidelines did not guarantee safety or sustainability,” she said.

“Today’s report from the Independent Reconfiguration Panel includes 15 recommendations. The HSC now needs to answer these questions:

1. Why were the Safe & Sustainable team invited to Northern Ireland when a Royal College of Surgeons report only last year found that surgery was safe?
2. Lord Ribeiro’s report states that surgical teams should have at least four full-time surgical consultants. Will the HSC revisit its current recommendation which would see surgery shifted to Dublin which has three surgeons, and support the views of the families and the Minister which would see an all-island team comprising a team of four surgeons?
3. What steps will the HSC take to ensure co-ordination with adult congenital heart services? Lord Ribeiro’s report criticised the lack of co-ordination between children & adult services in England & Wales? These figures have not been included in the review process here Northern Ireland.
4. How will the HSC ensure safety through the entire care pathway as identified by Lord Ribeiro? As it stands there is no safe care pathway for children with problems not diagnosed before birth who live more than three hours journey from Dublin.

“It was the HSC’s decision to invite the now discredited Safe & Sustainable team to Northern Ireland in the first place. The team’s findings in England & Wales have now been rejected by a High Court judge, an independent panel of experts, and the Secretary of State for Health himself.

“Because of this decision, the RBHSC is now the only hospital in the UK or Ireland where the closure of children’s heart surgery is still on the table. The HSC should outline what steps they will take to ensure children and adults in Northern Ireland will benefit from standards recommended by Lord Ribeiro today,” she added.