Archive for 2010
1% of all live births involve congenital heart abnormalities, ranging in severity from the most simple to the more complex; often these patients undergo major life saving cardiac surgery during their infancy and again during their childhood years, and thanks to the advances in medical treatments and surgical techniques, the majority of them now survive into their adult years.
Dr Andrew Sands, Consultant Paediatric Consultant said, ‘Surgery is relatively new, rarely curative, and this patient group often experience further cardiac complications, and may face further high risk surgery and intervention, into their adult life. They can have complex medical, surgical and psychological needs, and require the input of a multidisciplinary team to address these issues.’
He continued, ‘This is a relatively young, but significant, patient group who up until now have been mainly managed by the paediatric cardiologists within the regional paediatric cardiology unit of The Royal Belfast Hospital for Sick Children. However, this condition is lifelong and as such requires regular input from the specialist centres throughout their lives. The transition from childhood into adolescence and beyond into that of adulthood is a difficult time for everyone, however, when we add a lifelong, and at times life limiting condition, then the real need for support for these patients & their families becomes apparent.’
Katy Rennick, Paediatric Congenital heart disease Nurse Specialist said, ‘To meet this need we have developed a Nurse-led Congenital Heart Disease Transition Clinic for 14-16 year olds (rheartz), which is held in Bradbury Health and Wellbeing Centre one day twice a month. Through this service we aim to provide a smooth transition for patients from the paediatric to adult services for around 100 – 150 teenagers per year. This service has been born out of an expressed need from the patients and their parents, and based on research within other Congenital Heart Disease Centres.’
‘Jan Gordon Adult Congenital Heart Disease Nurse Specialist added, ‘This is a nurse led service which concentrates on education, health promotion, empowerment and peer support. We hope to empower our patients to become experts within their own health’.
The Curran family from north Belfast held a hugely successful Dinner Dance at the Belfast Castle on 23 October to raise funds for the charity. With an auction that went through the roof (apparently helped by the bottles of wine strategicaly placed at the tables ) the night was at tremendous success.
Meabh Curran (2) recently received treatment at Clark Clinic, Royal Belfast Hospital for Sick Children for a serious heart condition and the family wanted to raise funds to help support other children in Northern Ireland with congenital heart problems, and their families.
Many thanks to the Curran family and all their family and friends for supporting the charity!
Local Cookstown Football Club, Killymoon Rangers also selected the charity as their ‘Charity of the Year’. Kenny is a member of Killymoon Rangers and the club wanted to show their support for Kenny and his family, and help raise essential funds for the charity.
Many thanks to the Reid family and Killymoon Rangers for their generous support and help.[
A country music concert held last week in Mullavilly Parish Church Hall, organised by the Overend family and Bertie Milligan whose grandson Samuel Agnew has received treatment at Clark Clinic, has raised funds for the Children’s MRI Scanner Appeal.
Samuel has had to travel to Dublin twice to have an MRI Scan so the family are very aware of the importance of securing an MRI Scanner for the Children’s Hospital. Thanks to the organising committee and to all those who came along and enjoyed what was by all accounts a fantastic night out!.
The Dickson family from Sixmilecross organised a disco for schoolchildren in the local area to raise funds for the charity. According to Ebony (6) , who has recently had surgery for a serious heart condition, the disco was ‘brilliant with a dancing compeition and lots of sweets!’. Many thanks to the Dickson family for organising this event and to everyone in the local community who came along and supported it.
This top industry award was won by Northern Irish company, Questmark, for their delivery of the multipurpose telemedicine project housed in at Clark Clinic.
Jointly funded Children’s Heartbeat Trust and the Belfast Trust, the Heartbeat Suite uses real-time interactive video communications and imaging services to link paediatric cardiologists directly to the homes of children with serious heart conditions throughout Northern Ireland.
In the past five years, 160 patients have benefitted from this service with 17 families currently availing of this unique support system. Evidence has shown that this videoconferencing support has reduced anxiety in parents accessing it. Additionally, hospital re-admissions, A&E attendances, and GP visits have also been lower amongst this group. While the latter benefit provides significant cost-savings for the Health Service, it is the re-assurance that videoconferencing gives parents that is the more important benefit.
Commenting on the Award, Sam McMaster, Questmark’s Chief Executive said “this is an excellent example of how industry, charity and the NHS can collaborate to develop new services that are specifically enabled by video-communications technologies. The lessons learned from this project are already being applied into other patient groups including a pilot in the East Midlands for people with cystic fibrosis. In years to come more and more healthcare and support will be delivered this way. It has been a great privilege to work with the Clinicians in Clark Clinic, the Children’s Heartbeat Trust and the families and patients we have supported”.
Congratulations to Questmark on winning this prestigious award!
Rachel Cochrane, (pictured) has just celebrated her first birthday. It took everyone a second to recognise her when she arrived back in Clark Clinic for the cheque presentation, as when she left she had no hair at all and now has a full head of dark locks that could rival Cheryl Cole!
Thanks so much to all who supported and helped out with the coffee morning!
The Anchor Boys 1st Charlemont BB raised funds for the charity by collecting coins in large Smarties tubes throughout the year. Pictured here are the Anchor Boys with Rebecca Whiteside (a patient at Clark Clinic) presenting the cheque to Sarah Quinlan. Rebecca and her mum, Lesley (pictured with her husband and two sons in back row) told Rebecca’s story of her treatment and surgery with lots of props to help explain the procedures and of course showed everyone her Bunny Rabbit, who stayed right beside her the entire time.
A big thank-you to the Anchor Boys for their fundraising and also to Rebecca for sharing her story.
The Red Gala Ball was held on 23 July 2010 at the Belfray Country Inn, Drumahoe and was a great success with a live cabaret show providing fantastic entertainment for all attendees. Many thanks to all who were involved in organising such a successful night.
The Parkgate Donkey Derby & Vintage Gathering 2010 very generously donated the proceeds of the event to the Children’s Heartbeat Trust. By all accounts it was a fantastic event and great fun was had by all! A special thanks to Warwick Manson and Harry Irvine who organised the day.