PricewaterhouseCoopers & Children’s Heartbeat Trust win Institute of Fundraising partnership award!

April 12th, 2012

Pamela Vallentine hosted the awards and is pictured here with Benny Miskelly (chair of Social Committee, PWC), his colleagues and Sarah from the charity

Our partnership with PricewaterhouseCooper (PwC) has won the Northern Ireland Institute of Fundraising’s ‘Partnership of the Year 2012′ award!

PwC raised over £25,000 for the charity which will fund a complete refit of our Heartbeat Parent accommodation in the hospital. As well as this fantastic fundraising effort PwC also offered financial and strategic support which was invaluable to a small charity like ourselves.

One of the judges of the award said;
“Your nomination stood out because of the very large impact that
the partnership has had on the Children’s Heartbeat Trust, not only in terms of the significant funds raised but the professional support
and guidance that PwC was able to provide the charity. The judges were really impressed and I think for all of us it was the undisputed
winner!”

A massive thankyou to all at PwC NI!

Paranormal Charity Investigation Event; 20 April 2012, Shane’s Castle

April 10th, 2012

Paranormal Charity Investigation Event; 20 April 2012, Shane’s Castle

This investigation by a group called ECPI, ( East coast Paranormal Investiations) and promises to be an exceptional and spooky night out!

Family Day Out at W5 – Sat 5 May 2012

April 10th, 2012

We are holding one of our Family Day’s Out on Saturday 5 May at the wonderful W5. With over 250 amazing interactive exhibits in four incredible exhibition areas, W5 will be fantastic fun for all our families, no matter what your age!

To book your families place please contact sarah@childrensheartbeattrust.org/ 07584 164 815 with numbers of adults/ children/ toddlers (under 3) coming along. Lunch will be provided at 12.30pm so we would recommend getting to w5 about 10.30am so you can build up an appetite!

Tickets to be picked up at our Children’s Heartbeat stand just outside the entrance to W5 on the morning of the 5 May.

Response to Minister of Health’s call for review of child cardiac services in RBHSC

March 30th, 2012

You will probably have heard that the Minister of Health has called for a review of the child cardiac services in Belfast. We want to make sure that any review of services places the views of our families and parents of a child or young person affected by heart disease at the centre.

We have responded as below…

“On behalf of parents, we will seek immediate clarification from the DHSSPS on the terms of reference and timescale of the Department’s external review of paediatric congenital cardiac services in Belfast. Most importantly, we will also seek assurances that the views of families of children with congenital heart disease play a central role in the consultation. The continued provision of paediatric cardiac surgery at the Royal Belfast Hospital for Sick Children (RBHSC) is a vital concern and requires effective resourcing.

“The paediatric cardiology team at RBHSC works closely with colleagues across the UK and at Our Lady’s Children’s Hospital in Dublin to deliver a high standard of service for the approximately 250 children born in Northern Ireland each year with congenital heart disease.

“First and foremost this is a very difficult time for the families of the children who died following surgery and our sympathies are with them.

“We welcome the decision by the Belfast Trust to invite the Royal College of Surgeons to conduct a review and await its findings. 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.

“Anyone with concerns regarding care for their children should contact the Department’s helpline on 0800 917 8226

“Any families who wish to avail of the services of the Children’s Heartbeat Trust should contact us on 07584 164 815.”

Information Day for GUCH’s and young adults

February 29th, 2012

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In partnership with GUCH PA we are holding an information day for our GUCH’s (Grown Up Congenital Hearts) and young adults over 16 to provide information on living with a heart condition as an adult and giving you the opportunity to ask questions too. The event is open to GUCH’s and young people, and also any parents, family members or interested parties who would like to come along. This is a free event, please contact 01473 252007 or admin@guch.org.uk to reserve your place.

Children’s MRI Scanner Appeal highlighted in BBC Documentary

February 28th, 2012

The BBC ‘In Your Corner’ programme show on Monday 27 Feb highlighted the urgent need for an MRI Scanner at the Children’s Hospital. View the programme at ://www.bbc.co.uk/iplayer/episode/b01cqmn1/In_Your_Corner_Series_2_Episode_1/

There is currently limited access to MRI for sick children in Northern Ireland and demand greatly exceeds availability. Children who do receive scans are referred to another department in the adult hospitals or may even be transferred to another hospital outside of Northern Ireland. To help us raise the £2,000,000 needed for this piece of equipment please visit www.mriscannerappeal.org or make a £3 donation by texting ‘Scan’ to 70003.

You can also listen again to the Cullen family being interviewed on Talkback about the need for an MRI Scanner in the Children’s Hospital in Belfast at http://www.bbc.co.uk/iplayer/console/b01cl4fp – interview starts at 1.05:35.

South Down Family Support Group Meeting; 7 March at 8pm; Banbridge Leisure Centre

February 28th, 2012

We are holding a Public Meeting on Wednesday 7 March at 8:00pm at Banbridge Leisure Centre, Downshire Road, Banbridge.

The aim of this meeting is to set up a local family support group offering parent-led support and advice for parents and families of children with heart disease in the South Down area. Anyone affected by the issue of heart disease in children and young people is invited and encouraged to attend.

Liam’s Little Hearts Walk; Sat 10 March; Craigavon Area Hospital – RBHSC.

February 28th, 2012

Liam’s Little Hearts Walk; Sat 10 March; Craigavon Area Hospital – RBHSC.

McKee family from Rathfriland present local fundraising

February 14th, 2012

Caption for pic: Gillian Knox, Play Specialist at Clark Clinic accepts the funds on behalf of Children's Heartbeat Trust. (L-R) Judith McKee, Grace McKee, Aaron McKee, Gillian Knox, Ian Clyde, Leeanne Clyde. Caption for pic: Gillian Knox, Play Specialist at Clark Clinic accepts the funds on behalf of Children's Heartbeat Trust. (L-R) Judith McKee, Grace McKee, Aaron McKee, Gillian Knox, Ian Clyde, Leeanne Clyde.

The McKee family from Rathfriland presented funds raised by the Bronte Steakhouse at a charity night and donations from the Presbyterian Churches, Rathfriland to Gillian Knox for the Children’s Heartbeat Trust.

This fundraising was motivated by little Grace McKee, who was born with a serious heart condition and is currently receiving treatment at Clark Clinic in the Royal Belfast Hospital for Sick Children. The McKee family would like to thank Leanne and Ian Clyde from the Bronte Steakhouse for their fundraising efforts and all those who donated to the charity.

Paediatric Cardiac Surgical Surgery – Update

February 7th, 2012

We have been hearing a number of concerns in the last few days about the paediatric cardiac surgery service at the Royal Belfast Hospital for Sick Children so we asked the consultants at Clark Clinic to clarify the situation. Having received the response below we feel able to reassure parents and families that the surgical service is continuing in Belfast. Response in full below..

The surgical service for Congenital Heart Disease in Belfast is currently provided by two surgeons employed by the Belfast Trust with support where needed from two further surgeons based at Our Lady`s Hospital for Sick Children in Dublin. This network arrangement has been established to ensure that there is more comprehensive surgical cover.

The surgeons based in Belfast are Professor Fred Wood who has more than 30 years experience working as a Congenital Heart Surgeon and Mr. Chris Austin who is at present working in a Locum Consultant Capacity. Mr. Austin has spent the last year gaining further expertise in Congenital Heart Surgery in Dublin and at The Evalina Children`s Hospital in London. Interviews will be held on 5th April 2012 for a permanent appointment.

The two Dublin surgeons who operate in Belfast are Professor Mark Redmond and Mr. Lars Nolke both also very experienced Congenital Heart Surgeons.

With this arrangement the number of operations performed in Belfast for congenital heart conditions has not reduced and patients have received their surgery in a timely manner. As has been the case for many years Children with very complex diagnoses such as Hypoplastic Left Heart are transferred mainly to Birmingham Children’s Hospital. A small number of patients have also been transferred to Dublin and the Evalina Children`s Hospital in London.

The priority of the Paediatric Cardiology and Cardiac Surgical teams to ensure that children from Northern Ireland receive safe and timely treatment and we have the most robust audit and governance procedures of any centre in the U.K to continuously monitor outcomes