Archive for 2016
Expanding the services available for children born with congenital heart disease and their families is essential to create a world leading service – that was the message today as the Children’s Heartbeat Trust launched their 2017-2020 Strategy document at an event in Belfast.
The charity, which was founded in 1984, helps children born with congenital heart disease and their families through a range of initiatives giving direct support as well as funding for the Clarke Clinic at the Royal Belfast Hospital for Sick Children
Speaking at the launch of the strategy document, charity Chief Executive Sarah Quinlan said:
“Over 200 children are born every year in Northern Ireland with congenital heart disease which is Northern Ireland’s most common birth defect. Many face complicated surgery to treat their conditions, including open heart surgery, at a very young age. The recent £42m investment in an all-Island Children’s Heart Surgery network will play a vital part in treating these children and to compliment this important development, we want to ensure that the wider services, from family support and youth services to research and awareness campaigning, are enhanced give heart families across Northern Ireland a world leading support and care from diagnosis until adulthood.
“Children’s Heartbeat Trust has for many years supported both the Clark Clinic and children born with congenital heart disease and their families. Our 2017-2020 Strategy document is published today following an extensive period of analysis and consultation with families, doctors, nurses, government and all of those we work with,” said Sarah.
The 2017-2020 strategy document outlines the charities key priorities in the coming years which includes:
- Increasing family support services including the development of a Family Support Hub and ensuring support for families travelling outside of Northern Ireland
- Developing youth services by expanding the programme up to 18 years of age and looking at innovative ways to respond to the needs of young people with heart disease
- Funding & supporting multidisciplinary research into heart disease in children
- Represent heart families to ensure that children are at the centre of all decisions made about the clinical services they require.
At the launch event, which was attended by clinicians, families and children with congenital heart disease, the charity’s Chair Professor Nichola Rooney also said:
“The future provision of health services across all specialties will focus on collaboration and centres of excellence. Children’s heart services are the first to be delivered on such a basis across the island of Ireland and it is vital that more and more children can avail of these services. The Children’s Heartbeat Trust will continue to expand our support for the hospital, children, their families and the work of the wider network to make sure this takes place.”
What a fantastic day we had at the Seagoe Hotel on Sunday 4th December at our Christmas Party!
We began the festivities with a VIP concert from our fave Frozen Princesses Anna and Elsa and had lots on offer from Christmas Crafts and frosty fun to making magic cookies, taking super cool sELFies and building our own marshmallow snowmen (before eating them!!) As a very special treat Santa travelled the whole way from Lapland just to come and see us…. and he even brought presents! We really enjoyed catching up with some familiar faces and welcoming some new families into our huge heart family!
Huge thankyou to all of our lovely families and helpful volunteers that came along to the event and brought lots of Christmas Spirit, we hope you all had as much fun as we did!
Hope you all have a very Merry Christmas and we look forward to seeing you all in 2017!
We are supporting a campaign being coordinated by the charity, Little Hearts Matters about making a change to DLA. This is a really important and frustrating issue for our heart families so if you have been affected please contact your local MP as below and encourage them to attend the meeting in Westminster to support having children’s heart disease recognised in the Disability Living Allowance Assessor Pack.
Help us make a change to Disability Living Allowance for children with heart disease.
Why are so many heart children turned down for DLA despite their disabilities? We think it’s partly because heart disease is not given a place in the guidance used by the people who look at claims.
On Tuesday 29th November national children’s heart and adult congenital heart charities are holding a meeting in Parliament to obtain MPs’ support in getting children’s heart disease recognised in the Disability Living Allowance Assessor pack.
We need your help to get as many MPs to attend the meeting as possible.
Please could you write to your MP and ask him or her to present you at the meeting. If you need to find your politician’s name and address, follow this link http://www.parliament.uk/mps-lords-and-offices/mps/.
You can also find an example of the kind of letter that you might send or email to your MP below. All you need to add is information about your own child, their needs and any problems you have had claiming DLA.
Link to sample letter HERE
This is your chance to help us make a change. Thank you.
Our beautiful Christmas Cards are now available to purchase! Each year they are designed by two of our wonderful heart kids and this year is no different.
A pack includes 10 cards, 5 of each design and can be purchased for £5.00 per pack.
To order, please email firstname.lastname@example.org or call 028 9031228.
Our next activity day out for our teens aged 12-16yrs will be Sunday 13th November 2016 from 12.45pm to 4.30pm.
Join us for some off road Segway in the Titanic area of Belfast and a Pizza afterwards at the Odyssey (SSE).
To register and for further details e-mail Stevie at familysupport@childrenshea
rtbeattrust.org or call the office on 02890312228.
Ho Ho Ho !
Join us for our Christmas festivities, food and entertainment on Sunday 4th December 1-5 pm at the Seagoe Hotel, Craigavon.
Book by e-mail to Stevie at:
Let us know your name and address along with the names and ages of your children.
Remember to tell us if you have any dietary requirements also. We look forward to seeing you all then for lots of festivities!
The Minister for Health, Michelle O’Neill MLA, today officially opened the new MRI Scanner Unit at the Royal Belfast Hospital for Sick Children. Attending the launch was Sarah Quinlan, Chief Executive of the Children’s Heartbeat trust, one of the four local children’s charities who raised £2million to help fund the scanner.
The Children’s MRI Scanner Appeal was set up by four charities: Carrickmannon MRI Scanner Children’s Appeal, Helping Hand, the Northern Ireland Children’s Cancer Unit Fund and the Children’s Heartbeat Trust. Between 2011 and 2013 they held and co-ordinated fundraising events right across NI, and this, along with funding from the Belfast Health & Social Care Trust, has funded the purchase, installation and running costs of the scanner.
Like all other children’s hospitals across the UK, the Royal Belfast Hospital for Sick Children will now be able to carry out investigations on patients without undergoing different types of investigation which may be invasive or involve radiation.
Speaking at the launch Sarah Quinlan, Chief Executive, Children’s Heartbeat Trust, said: “We came together with the goal of raising the funds that would help the Royal Belfast Hospital for Sick Children increase the service it gives to local children by installing an MRI scanner. Our target was to raise £2million and it was thanks to the wonderful fundraising efforts of the Northern Irish public that this amazing target was reached.
“The completion of the installation of the MRI will mean better detection for children, which will ultimately help in the treatment they are given. All four charities are delighted to have been able to support this project and we are grateful to everyone who donated and supported the appeal.”
On Sunday 9th October we had eight very brave supporters conquer Belfast Castle by taking part in our charity’s abseil. The weather was perfect and lots of supporters came out in force to cheer everyone as they abseiled 100ft down Belfast Castle’s tower. Big thanks and well done to everyone who took part to raise funds and awareness for local heart children.
If you would like to take part in an abseil for the charity, please register your interest with Lynn on 028 90312228 or email: email@example.com
Below is some photos taken from the day!