Children’s Heart Week -Young artists on show in the heart of Belfast

Children’s Heart Week kicked off with winning exhibition of hearts from across Northern Ireland at Belfast City Hall.

Zoe Fleck (9) & Kelsie Robinson (20 months) at the Children's Arbeat Exhibition in Belfast City Hall for Children's Heart Week

Belfast Mayor Niall Ó Donnghaile joined Children’s Heartbeat Trust’s Executive Officer Sarah Quinlan and heart children, Kelsie Connolly and Zoe Fleck at Belfast City Hall today to launch the inaugural Children’s Heartbeat Trust Heart Week Art exhibition.

The exhibition is formed of over 300 hearts, drawn by children from across Northern Ireland aged between 4 and 10 and is on display in the East Wing of the famous building. The competition was launched in March with ten finalists shortlisted to four overall winners. The four winners are; Jessie-Ann Gault (6), Daniel Hynes (6), Chloe Whitford (7) and Zoe Fleck (9).

Mayor Niall Ó Donnghaile opened the exhibition and said: “This is a very impressive exhibition and everyone who participated is to be congratulated on their fantastic work.

“You are helping many others suffering heart problems because this exhibition will be seen by the thousands of people who visit city hall every week and I hope it will make them think about, and want to support, the great work done by the Children’s Heartbeat Trust.

“I am thrilled that all of you could come here today for the opening of the exhibition and to enjoy Belfast City Hall. Don’t forget to tell all your friends about the exhibition, I intend to tell all of mine about it,” he added.

Children’s Heartbeat Trust Executive Officer Sarah Quinlan said: “This year for the first time we launched a competition to celebrate Children’s Heart Week and we are delighted with the response. Children’s Heartbeat Trust supports children with heart disease and their families across Northern Ireland – this is the most common birth defect which is treated through medical and surgical support at Belfast’s Clarke Clinic.

“Today’s competition includes work by many children who have suffered from congenital heart disease as well as those undergoing treatment at the moment. I would like to thank all our participants and offer special congratulations to our winners,” she added.

The exhibition runs from Monday 14th to Friday 18th at Belfast’s City Hall.

Update re: Paediatric Cardiac Services Review – Katie Boyd

Thank you so much for all your letters/ email and facebook posts for us to submit to the review panel – the response has been really remarkable and very poignant.

If you haven’t had a chance yet to send in your thoughts and experiences please do – it will really help us present the strongest case and support for the entire scope of paediatric cardiac services offered by Clark Clinic.

We will have the opportunity to meet with the panel on Tuesday morning for one hour, when we will hand over all your submissions. Parents whose children are under the care of the consultants at Clark Clinic and represent different experiences will be there to meet the panel too and share their experiences and thoughts;

Katie Boyd (me) – Mum to Ollie (2) and chairperson of the charity’s parent’s committee/ group organiser for Antrim area. Ollie has received surgery for transposition of the great arteries in Royal Belfast Hospital for Sick Children (RBHSC).

Allen & Rachael McCullough – Parents to Jay (1). Jay has double outlet right ventricle of tetralogy of fallot and Down’s syndrome. Jay has had surgery in Belfast (RBHSC) and his next scheduled surgery will be in Birmingham.

Grainne Curran – Mum to Kate, Meabh and Luke. Meabh (3) has cardiomyopathy and receives all her treatment and care at Clark Clinic.

Jean Hill – Mum to Camryn and Rachael/ group organiser for Belfast area. Rachael (4) had surgery for transposition of the great arteries in Our Lady’s Children’s Hospital, Dublin.

Sinead Campbell – Mum to Shea and Nathan/ group organiser for South Down. Nathan (2) has hypoplastic left heart and to date has had two surgeries in Birmingham Children’s Hospital.

Eamon McLaughlin –Dad to Cathal (6) and member of Omagh family group. Cathal has Down’s syndrome and has had surgery in Belfast for tetralogy of fallot.

Recent correspondance from the Health and Social Care Board who have commissioned this panel states.

“”The independent expert panel will be chaired by Professor Sir Ian Kennedy and will include clinicians with a background in the care of children with complex heart conditions. The panel will visit the centre and meet with clinicians, families and parent group representatives during April. They will also consider all relevant information, including material provided by the Royal hospitals, before compiling a report which will be forwarded to the HSC Board by the end of May 2012.

This review is separate to the Safe and Sustainable review of children’s congenital heart services in England. However, the review will consider the current services provided in Belfast, taking account of the Safe and Sustainable national quality standards, which have been endorsed by the relevant professional associations in the United Kingdom.”"

Our key messages again are;

- We have complete 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.

- It is essential that wherever possible, families in Northern Ireland can access surgery in Belfast.

- Surgery must stay in Belfast. We believe that the best care for our children would be the continuance of the network arrangement with Dublin, and ask that more resources be put into an all Ireland surgical service, with surgery carried out over the two sites. This means the surgeon based in Belfast would be working as part of a strong all Ireland surgical team.

- The practical and emotional consequences of stopping surgery in Belfast for our children, families and indeed future parents and families affected by congenital heart disease is incomprehensible and extremely detrimental to overall family welfare considerations.

For more info on the Safe & Sustainable review in England visit http://www.specialisedservices.nhs.uk/safeandsustainable

Thanks so much for your support with this.

Katie

Cardiac Services Review – update from Katie Boyd, Chairperson of our Parents Group

Cardiac Services Review – update from Katie Boyd, Chairperson of our Parents Group

“We have learned that the onsite visit by the review panel of paediatric cardiology services will take place on Monday 23 & Tuesday 24 April. We have concerns over this incredibly short timeline but are determined that parents and families views and experiences play a central role in this review. Please read the following carefully and help us represent you.

We welcome this review, but the bottom line is that one possible outcome of this review is that paediatric cardiac surgery will no longer be provided in Belfast. As a charity representing parents and families in Northern Ireland we absolutely do not want this to happen. If this was to happen, potentially all surgery could be moved to other specialist centres in the UK, including interventional catheterisations, as surgical cover is required onsite for these to be carried out safely (Our Lady’s Hospital in Dublin would not be able to facilitate all the Belfast cases in their current facilities).

It is so important that whenever possible, families in Northern Ireland can access cardiac surgery in Belfast and have the emotional and practical support of being close to their families and friends.

So what we want is for the majority of surgery to remain in Belfast as part of a network arrangement with Dublin – in effect an all Ireland surgical service carried out over two sites. This means the surgeon based in Belfast would be working as part of a strong all Ireland surgical team.

As a charity, we have 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.

It is very important that we share the opinions and experiences of you – our parents and families with this review panel. Given the short timeline and limited indication as yet on what opportunity we will have to meet with the panel, we have decided to ask you to send us a letter/ email/ or post on facebook your story and experiences of the services Clark Clinic offer. We will then submit these to the review panel.

Only us, as parents and families affected by this, can offer this unique perspective. As a guideline such a submission could follow
- Finding out about your child’s diagnosis
- Where your child was treated/ received surgery
- What support you received – both medically and emotionally
- Your personal views on paediatric cardiac services offered by Clark Clinic in Northern Ireland.

Please either email this to info@childrensheartbeattrust.org, post up on our facebook page under Children’s Heartbeat Trust or post to FAO Katie Boyd, Children’s Heartbeat Trust, c/o Clark Clinic, RBHSC, 180 Falls Rd, BT12 6BE

Please share this post on your own facebook page. Let’s get the word out to the masses and here’s hoping for a positive outcome to this review.

Regards
Katie Boyd, mum to Ollie (2years, transposition of the great arteries.)

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

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!

Family Day Out at W5 – Sat 5 May 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

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

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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

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.