Yummy Mummy Pamper Party!

March 9th, 2015

As Mother’s Day is fast approaching we thought we would take the opportunity to treat our Heart Mums to a little pampering!

On Sunday 22nd March we are hosting our first Pamper Party in Belfast. This will be the perfect setting to enjoy some well-deserved “me time” whilst getting to know other Mums that have children and young people with heart disease.

This event is completly free of charge although places are limited and booking is essential! Please see the poster below for booking details and further information.

Look forward to seeing you there!

Web Pamper Party

We are looking for a dynamic and committed Fundraiser

March 9th, 2015

 

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As part of our 2014 strategic plan we asked heart families to tell us what you need and what you want the charity to deliver for you and other families.  We have listened to your feedback and so are now bringing on board a Fundraiser to help us develop our fundraising activities so we can continue to deliver and introduce more support services for babies, children and young people affected by heart disease.

Fundraising Officer

Based in Belfast, covering Northern Ireland.

Permanent Full Time

Hours: 37.5 per week

Closing Date: Wed 25 March 2015 at 5pm

This post provides the opportunity for an enthusiastic, motivated and outgoing individual to make a significant difference to the organisation and the families we support.  The individual will lead in the development of fundraising and income generation activities for the charity and by raising awareness of our services.

We welcome dynamic and committed individuals to apply for this post and join the Children’s Heartbeat Trust team.

Essential Criteria includes

–       Third level qualification in relevant subject

–       At least 2 years recent experience in a fundraising, events or PR/marketing environment

–       Hold a valid driver’s licence and have access to a car.

For an application pack please email info@childrensheartbeattrust.org

Children’s Heartbeat Trust reserve the right to interview only those candidates who appear from the information provided to be the most suitable for the job.

We are an equal opportunities employer

 

Minister of Health announces acceptance of all IWG recommendations

March 3rd, 2015

On Tuesday 3 March the Health Minister Jim Wells MLA told the NI Assembly that he is accepting the recommendations of the IWG and is working with the Republic of Ireland Health Minister Leo Varadkar to establish an all Ireland service.

 

Sarah Quinlan from the charity said: “We recognise and acknowledge the speed with which the process has moved under the current and previous Health Ministers since the Working Group reported last Autumn. There is still an interim period of up to 15 months while the new all-Island structure is put in place and during that time families still face the upheaval of travelling to England for surgery. Ministers from Belfast and Dublin need to work to reduce that time period as much as possible. We will also be seeking assurances that when emergency surgery is required in Dublin during that interim period it will be available.

 

“The Minister has also confirmed that the all-island Congenital Heart Disease (CHD) Network Board will be comprised of patient representatives, clinicians, service providers and commissioners. Children’s Heartbeat Trust will be represented on that Board and we will continue to represent the views of children and their families. It is positive that there will be family representation at all levels in the new structure. We very much welcome the creation of a Family Liaison Nurses post which will come into effect on the 1st April.

 

“The Minister for Health’s announced investment of £1.2m must be used to improved the service in Belfast and ensure the development and construction of a Children’s Heart Centre so that the current high standard of care is safeguarded.

 

“Our overriding priority as we began this campaign was to ensure that the treatment provided to children with congenital heart disease was the most appropriate, clinically and in terms of family support. At the start of this process we were promised an improved service, now we need to see this being delivered without delay.”

 

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Chief Executive, Sarah Quinlan wins CO3 Leading on Political Impact Award

March 2nd, 2015

Sarah Quinlan, CEO of the Children’s Heartbeat Trust has won the prestigious Leading on Political Impact Award at CO3 Chief Officers Third Sector’s Leadership Awards gala at the Slieve Donard Hotel in Newcastle, Co. Down. The award recognised the success of the ‘Hands Up for Children’s Heart Surgery’ campaign, which successfully prevented children’s heart surgery services from being moved to England in the long-term, instead to be managed through a Belfast-Dublin network arrangement.

The CO3 Awards took place as part of CO3’s leadership Conference, gathering just under 200 Northern Ireland charity leaders as well as an impressive combination of NI, GB and US experts in Third Sector issues.

Judged by independent experts, the coveted CO3 Leadership awards reward the passion and successes of Third Sector Chief Officers in Northern Ireland through eight categories.

Nora Smith, Chief Executive, CO3, said: “CO3 are delighted to recognise the talent, passion and real changes Northern Ireland Third Sector leaders make at the heart of our communities. “For one night every year, the CO3 Leadership Awards shine a light on these leaders who work selflessly, quietly, and intensively to achieve life-changing results for those in most need. “Sarah Quinlan and her team at the Children Heartbeat Trust have made a significant difference to the care of children suffering from heart disease. Her contribution to the political process is testament that Third Sector leaders play a central role in influencing our government’s decision-making. Sarah is a worthy winner of the Leading on Political Award, sponsored by nfpSynergy.”

On receiving her award, Sarah Quinlan said: “It was very special to be a contender for this prestigious CO3 Award but winning it means the world to me.

“It is a great pleasure and honour to be acknowledged for achieving, as a team and with the support of our fantastic heart families,

Pictured from left to right: David Meade, Broadcaster, Sarah Quinlan, CEO, Children’s Heartbeat Trust and winner of the CO3 Leading on Political Impact Award, Tim Harrison, Research Director, nfpSynergy (award sponsors), and Nora Smith, CEO, CO3 Chief Officers Third Sector

Pictured from left to right: David Meade, Broadcaster, Sarah Quinlan, CEO, Children’s Heartbeat Trust and winner of the CO3 Leading on Political Impact Award, Tim Harrison, Research Director, nfpSynergy (award sponsors), and Nora Smith, CEO, CO3 Chief Officers Third Sector

wider society and the media, the retention of children’s heart surgery services on the island of Ireland. “I am very proud of this award and of my fellow nominees, all worthy of similar recognition.”

A problem shared…..

February 17th, 2015

In response to a need for families to be able to access local, professional support we have been working closely with Carecall to provide a confidential counselling service for families in Northern Ireland with children and young people that have been affected by heart disease.

This service is completely free of charge and appointments can be set up either individually, as a couple or as a family unit.

For immediate 24/7 support freephone (landline only) 0800 389 5362

For appointment bookings call; 028 90896510 or email; support@carecallwellbeing.com

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Launch of Family Heart Book and Counselling services

February 16th, 2015

Mayor of Derry Brenda Stevenson, today helped Northern Ireland’s leading children’s heart charity launch two new family support initiatives; Counselling Services and a new ‘Family Heart Book’ at the Guildhall in Derry.

The book, which is the first of its kind, is published by the Children’s Heartbeat Trust and aims to help children who are born with a heart defect make sense of their condition and treatment in a simple and artistic way as they grow up.

Having a child with heart disease or facing the prospect of your child’s heart surgery can be an overwhelming experiences, and the new counselling initiative will offer a free and confidential service to heart families to help them cope with the anxiety and stress.

Support to help deliver these initiatives came from the family of Kerry Crocker who was born with a complex congenital heart defect and grew up in Derry. Sadly Kerry passed away in May 2013 aged 19. Since then Kerry’s family have been active fundraisers for the Children’s Heartbeat Trust and wanted to take these efforts a step further by helping other children with congenital heart defects understand their experiences and for their families to have enhanced support in place.

Speaking at the event Kerry’s mum Wendy said: “As Kerry grew up we saw how difficult it was for her to understand why she had to go to hospital and work through the different challenges of growing up a serious heart defect. A ‘Family Heart Book’ like this would have been a real help in talking through and discussing these issues, both for Kerry and her siblings. The new counselling service will also offer much needed professional support for heart families who have to face so many different issues and anxieties.

“Hopefully our experience can help other heart families and we are delighted that the Children’s Heartbeat Trust has developed these two new family support initiatives,” she added.

Speaking at the launch Sarah Quinlan, Chief Executive of Children’s Heartbeat Trust said: “We are really excited to launch the ‘Family Heart Book’ and Counselling Services for heart families across Northern Ireland. When children find out that they have a heart defect it can be very difficult for them to understand about their condition. By using creative ways of charting their own journey and mapping their progress, the book will help children cope with their condition and help reduce worry about treatment and hospital visits. This is the first book in a planned series of three to adapt to different challenges that arise a child grows up. It is a fun way to deal with a serious subject and we encourage any families affected by congenital heart disease to get their hands on one.”

In partnership with Carecall we are responding to a real need for our heart families to be able to access professional support through a counselling service to help all members of the families cope with the realities of having a child, brother or sister with a congenital heart defect.

Mayor of Derry Brenda Stevenson with heart kids at the launch of our Family Heart Book and Counselling services.

Mayor of Derry Brenda Stevenson with heart kids at the launch of our Family Heart Book and Counselling services.

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Lord Mayor of Belfast Cllr Nichola Mallon is CHD Aware for CHD Awareness Week

February 10th, 2015

On Monday 9th the Lord Mayor of Belfast Cllr Nichola Mallon met with two of our young heart heroes, Seb and Eva to help raise awareness of Congenital Heart Disease.

One year old Seb McNally joined Eva Toman (4) and Riley Hearst (3) along with their parents at the City Hall who spoke about their experiences of raising children born with congenital heart disease. All three children have undergone at least one heart operation, with most expected to have further surgery during their infancy and early years.

Speaking after the event, Lord Mayor Cllr Nichola Mallon said: “Congenital Heart Disease is Northern Ireland’s most common birth defect and I was touched to hear the stories of children and their families today. The work of clinicians at Clark Clinic and those at the Children’s Heartbeat Trust is vital in providing both medical care, and in raising awareness, providing assistance and support for children and their families.”

Seb McNally (1) and Eva Toman (4) with the Lord Mayor of Belfast

Seb McNally (1) and Eva Toman (4) with the Lord Mayor of Belfast

Caravan Bookings

February 6th, 2015

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Our caravans in Ballycastle and Newcastle will be open from Easter right through the summer for our heart families. Both caravans are always very popular and we do our best to accommodate as many families as we can. If  you would like to be added to the list of families hoping to make a booking and have not stayed in the caravans in 2014 then please email Alison at admin@childrensheartbeattrust.org

Responding to the Dept of Health Consultation is easy!

January 8th, 2015

The Children’s Heartbeat Trust would encourage all our heart families and members to respond to the current consultation on the future of children’s heart services for Northern Ireland.

It is really important that you let the Department of Health know what you think and the deadline is 23 January so you have to do it before then..

It is really easy for you to respond!

1. The ideal way is to fill in the Response form that is on the Department of Health website – you can find the consultation document and this form at

http://www.dhsspsni.gov.uk/showconsultations?txtid=74661

We have created Guidelines to help you fill in this form.  You can download the guidelines hereConsultation Guidelines

Or

2. We know how busy everyone is so to help with time we have also drawn up two sample letters that you can add your own information to.  We have based these on information and feedback we have had from heart families about their concerns

Sample Letter 1 – families whose child has had or will need heart surgery

Sample Letter 2 – families whose child receives ongoing care and treatment at Clark Clinic.

There will obviously be overlap between these two so feel free to swap around information and definitely add your own thoughts too!

The email address to send this letter to is:  ccsconsultation@dhsspsni.gov.uk 

or you can send it by hard copy to: Congenital Cardiac Services Consultation, Department of Health, Social Services and Public Safety, Room 1, Annex 1, Stormont Estate, Belfast, BT4 3SQ

The charity has developed these guidelines and sample letters to help you respond to this consultation but please respond in whichever way you feel best gets across your point, what is the most important thing is that you put forward your thoughts and concerns.

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Christmas Cracker No.3!

December 23rd, 2014

 

On 8 April 2013, over 80 MLAs signed a pledge to protect childrens heart services in Northern Ireland.

Although the children’s surgical service is now moving to Dublin, we think the MLA’s should be reminded of their promises to heart families across Northern Ireland and asked what they are doing to ensure that heart children in their constituencies will be able to access their care in a service that has been invested in and protected against any further dismantling.

On our facebok page photo albums we have one album set up for each constituency with pictures of each MLA who signed that pledge. Please share and tag your MLA to remind them of their signed pledge to heart families.  You can see the albums at https://www.facebook.com/childrens.h.trust/photos_albums

This Christmas we need our MLA’s to deliver for heart children!

 

ChristmasCrackers x3F