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
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

http://www.change.org/en-GB/petitions/minister-of-health-mr-edwin-poots-dept-of-health-public-health-agency-keep-protect-enhance-children-s-heart-surgery-at-clark-clinic-rbhsc

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

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.”

‘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

http://www.lapthelough.org/index.php/site/event/

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.

Children’s MRI Scanner Appeal – £1M down, £1M to go!

July 5th, 2012

Samuel Hill from Newtownstuart is pictured with Sarah Quinlan from the Children’s Heartbeat Trust as he gives Super Scan man a ‘high five’ to celebrate the announcement that the ‘Children’s MRI Scanner Appeal’,has raised £1m of the £2m needed to purchase an MRI Scanner for the Royal Belfast Hospital for Sick Children.

Oran Creaney with Martina Purdy and Marie-Louise Connelly from the BBC who are dancing in the Royal Does Strictly event for the MRI Scanner this November

£1M DOWN £1M TO GO!

The four charities involved in the ‘Children’s MRI Scanner Appeal’ have announced that they are half way to raising the £2m needed to purchase an MRI Scanner for the Royal Belfast Hospital for Sick Children.

The hospital is currently the only children’s hospital in the UK and Ireland that does not have its own MRI Scanner and the facility will be dedicated to the diagnosis and treatment of sick and injured children in Northern Ireland.

Sarah Quinlan from the Children’s Heartbeat Trust, which is one of the charities involved in the appeal said, “We are delighted with the response to the Children’s MRI Scanner Appeal to date. The generosity of the Northern Irish public who have organised countless fundraisers across the country and given so many donations to the Appeal is overwhelming. Thank you so much to everyone who has contributed to getting the Appeal to this half-way mark and supporting our aim of purchasing an MRI Scanner for the Royal Belfast Hospital for Sick Children.”

Some of the fundraising events which have taken place across Northern Ireland for the appeal so far include, a duck race, peace bridge sponsored walks in Derry, Quids for Kids Day in partnership with Tesco, Tayto on-packet fundraising, Gelvin farmers tractor pull, abseiling from the Obel building in Belfast and static marathons.

Another key corporate event taking place in aid of the appeal is ‘The Royal Does Strictly’, sponsored by Kingsbridge Private Hospital. This exciting event will see six local personalities team up with members of staff from the Belfast Health and Social Care Trust and is being held on 10th November 2012 at Titanic Belfast.

For further information on the appeal and events including ‘The Royal Does Strictly’ visit www.mriscannerappel.org or Text SCAN £3 to 70444 to donate £3 to the Appeal.

Charity helps Investigations Staff at Clark Clinic keep children happy!

July 2nd, 2012

Jayne and Fiona from Clark Clinic Investigations Team

Jayne & Fiona from the Clark Clinic Investigations Team with the goodies purchased by the charity to help keep children getting ECG’s distracted both in Clark Clinic and at outpatients..

Families help fund new VIVID Q Portable Echo Machine for Clark Clinic

June 15th, 2012

A big thank you to the Gallagher, Mahon and Tucker families, who helped raise the funds to buy a VIVID Q Portable Echo Machine for Clark Clinic.

Each of these families has lost a child to a heart condition, which makes their fundraising and support for the charity even more inspiring. Children’s Heartbeat Trust recently held a presentation in Clark Clinic to thank the families.

At the presentation, Dr Frank Casey (Consultant Paediatric Cardiologist) showed the families how the machine worked and how important it is in the daily work of Clark Clinic. The children that these funds were raised in memory of are honored on a plaque placed on the machine reading;

Donated in loving memory of

Cody Gallagher (13 months)
Cailean Mahon (6 weeks)
Eoin Tucker (9 weeks)

by their family and friends

The new VIVID Q portable echo machine is a top of the range piece of equipment that allows the clinicians to take high quality echoes at outpatients and at the bedsides of children in Clark Clinic. It will greatly aid the diagnosis and treatment of other children with congenital heart disease in Northern Ireland.

Dr Frank Casey shows the Gallagher, Mahon and Tucker families the VIVID Q Portable Echo Machine

The Gallagher family

The Mahon family

The Tucker Family

Fishing Competition & BBQ; 30 June 2012; Kilgad Fishery

May 23rd, 2012

Fishing Competition & BBQ; 30 June 2012; Kilgad Fishery

Willowbreeze Angling Syndicate are hosting this fishing competition and BBQ with the inaugural presentation of the Children’s Heartbeat Trust plaque to the winner. If you would like to take part please contact willowbreezeanglingsyndicate@yahoo.com