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15/05/13 - Parents wanted for study into medical research trials
What is the purpose of the study? This study (which is called CONNECT) will look at people’s experiences and views of being invited to consent for their children to take part in medical research studies (also known as trials) when these are conducted in different situations. The two situations we want to compare are: a) [...]
13/05/13 - News Release – Parents urged to ‘Think HEART’ to save their baby’s life
Embargoed until: Monday 13th May 2013 PARENTS URGED TO ‘THINK HEART’ TO SAVE THEIR BABY’S LIFE DURING CHILDREN’S HEART WEEK During Children’s Heart Week (13th- 19th May), parents are being urged to check for warning signs of heart problems experienced by their children and follow life-saving guidance issued by the UK’s leading children’s heart [...]
09/05/13 - Press Clipping – Dean’s charity is close to his heart.
n.b the image on the bottom right is Alex Smith not Anne Keatley Clarke.
07/05/13 - Leicester Mercury – MP throws support behind heart campaign
MP for North West Leicestershire, Andrew Bridgen, is backing a national “think heart” campaign. It is being run by the Children’s heart Foundation to tell parents about the warning signings of possible heart problems and to follow life-saving guidance. The campaign provides parents with five easy signs to spot a heart problems. They include looking [...]
02/05/13 - Stourbridge News – MP backs heart campaign
MARGOT James is backing a campaign by the Children’s Heart Federation which calls upon parents to watch for early warning signs of problems. Think Heart aims to increase early diagnosis of children’s heart conditions. Every year 5,000 babies are born with congenital heart disease, yet only a third are detected before birth. The Stourbridge MP [...]
29/04/13 - Gazette Live – Stockton North MP supports ‘Think HEART’ campaign
A TEESSIDE MP is calling on parents across his constituency to check for warning signs of possible heart problems in their children. Alex Cunningham, Labour MP for Stockton North, is supporting Think HEART, the Children’s Heart Federation campaign, which aims to increase early diagnosis of children’s heart conditions. Think HEART provides parents with five easy [...]
29/04/13 - Future Commissioning of Paediatric Cardiac Surgery and Interventional Cardiology for the population of Northern Ireland 19th April 2013
Download the document here Dear Stakeholder, Re: Future Commissioning of Paediatric Cardiac Surgery and Interventional Cardiology for the population of Northern Ireland At the start of the consultation process the Health and Social Care Board gave an undertaking to keep stakeholders informed of key stages in the process. The Health and Social Care [...]
25/04/13 - Think HEART Parliamentary Briefing
This week nearly 50 Members of Parliament attended an event held by CHF to raise awareness about the charity’s ‘Think HEART’ campaign. The MP’s who attended were keen to support the campaign, which aims to increase the early diagnosis of children’s heart conditions. Think HEART provides parents with five easy signs to help to spot a heart [...]
09/04/13 - Comment on LGI surgery phased re-start 09/04/2013
The Children’s Heart Federation welcomes the reassurance that immediate safety issues in respect of paediatric cardiac surgery have been resolved. We understand that surgery will be phased in gradually over the next month starting with the lower-risk cases. We feel that it would help many parents to have an explanation as to what this means, [...]
09/04/13 - NHS England: Phased resumption of children’s heart surgery at Leeds Hospital agreed
Reassurance given on immediate safety issues but hospital asked to improve monitoring of care Children’s heart surgery at Leeds General Infirmary can begin a phased restart on Wednesday, NHS England said today (Monday). It follows completion of the first-stage of a review by a multi-disciplinary independent clinical team, which has been working to establish the [...]
09/04/13 - Statement from LGI: Leeds children’s heart surgery to resume on Wednesday 10 April
Leeds Teaching Hospitals NHS Trust is delighted to announce that we will be restarting children’s congenital cardiac surgery at Leeds General Infirmary from Wednesday 10th of April. Chief Executive Maggie Boyle said: “We stated on Friday that we wished to restart surgery once our partners were as confident in our staff and services as we [...]
06/04/13 - Statement from Leeds Teaching Hospitals NHS Trust – Surgical issue from 2005
6 April 2013 Re: Surgical issue from 2005 A spokesman for Leeds Teaching Hospitals NHS Trust said today: “The Trust monitors surgical outcomes in children’s heart surgery on an ongoing basis and in 2005 identified issues with one of our surgeons about outcomes for a specific procedure, repair of tetralogy of Fallot. “We invited [...]
05/04/13 - Statement: Lifting of the suspension of pediatric heart surgery at LGI
For Immediate Release Following the news about the lifting of the suspension of pediatric heart surgery at Leeds General Infirmary the Children’s Heart Federation would like to issue the following statement: CHF fully supported the decision to suspend pediatric heart surgery at Leeds General Infirmary because of safety concerns at the unit. CHF supports the aim to reinstate surgery [...]
05/04/13 - Leeds Teaching Hospitals NHS Trust – Joint Statement on Leeds Hospital Children’s Heart Surgery
04 April 2013 EMBARGO ON PUBLICATION UNTIL 08.00 AM FRIDAY 5 APRIL 2013 Joint Statement on Leeds Hospital Children’s Heart Surgery Following a productive multi-agency meeting to review the decision to suspend children’s cardiac surgery at Leeds General Infirmary, agreement was reached to work together to restart surgery on the site early next week [...]
02/04/13 - CHF Followup Comment on Paediatric Cardiac Surgery at the Leeds Children’s Hospital
The news regarding the suspension of surgical services at Leeds is very worrying especially to the parents and children who are due to have surgery in the next few weeks. We understand that all the families affected are being contacted individually by the Trust and we hope that by now that has happened – although [...]
28/03/13 - CHF Comment on Paediatric Cardiac Surgery at the Leeds Children’s Hospital
For immediate release 28th March 2013 Children’s Heart Federation is deeply saddened by the announcement that paediatric heart surgery is being suspended at Leeds Children Hospital. Our thoughts are with the heart children and their families who have not received the quality of treatment they needed and deserved. We hope that the suspension of [...]
28/03/13 - Statement – Safe and Sustainable High Court Decision of 27/03/2013
Yesterday the Court recognised the need for the NHS to continue its plan to improve services for children with congenital heart disease in order to ensure that services are safe and sustainable in the future, however the judge did rule that one part of the process was ‘unfair’. While CHF acknowledge the Court’s decision we [...]
25/03/13 - Statement by Leeds Teaching Hospitals NHS Trust – Paediatric Cardiac Surgeon
We received this afternoon a statement from Leeds Children’s Hospital which we have reproduced in full below. CHF notes that there are concerns about the treatment of patients with congenital heart disease and that the Trust is taking action. The Trust has asked us to make clear, that this action is not about adverse mortality or morbidity figures, however we have [...]
11/03/13 - April 10th 2013 – Day out at London’s o2 Arena
Are you aged 13-17? Join us for fun at London’s famous O2 arena with the British Music Experience and a delicious lunch. Meet other teenagers with heart conditions, and hang out with our friendly team. This event is open to siblings and friends as well. We’d love you to join us, if you’re interested complete [...]
07/03/13 - Safe & Sustainable – CHF Comment re: Judicial Review Judgement 7/3/2013
We are disappointed that this decision will result in further delays to the establishment of the new children’s heart care network, adding to the considerable anxiety that some families of children with a heart problem have been living under for many months now. Uncertainty about the final configuration of surgical and cardiology centres is now [...]
27/02/13 - Worcester Standard – Mum’s plea for screening tests on newborns
A MUM of two whose daughter is facing open heart surgery has urged health chiefs to introduce a potentially life-saving screening test on all newborn babies. Joanna Dobson, from Warndon Villages, is pushing for the Pulse Oximetry test – which measures oxygen levels in the blood – to become a standard procedure in delivery suites [...]
25/02/13 - Heart News February 2013
Download the latest issue of Heart News for February 2013 here
19/02/13 - Medical News Today – MPs, clinicians and patients are uniting to drive change for patients on long-term warfarin
A simple self-monitoring test could reduce the risk of stroke by half in thousands of people who currently take warfarin to prevent blood clots. Better access to self-monitoring of international normalized ratio (INR) levels, which measures how long it takes blood to form a clot, could also lower mortality rates by nearly two fifths,[1] reduce the number of complications [...]
15/02/13 - Research Request – Parents wanted to help design medical research
Are you a parent or carer of a child with a long-term medical condition or disability who has recently been ill with flu? Would you like to help design medical research? If your child: Is aged 6 months to 12 years Has recently been ill with a flu-like illness Has a long-term health [...]
13/02/13 - The Yorkshire Times – “Give Vital Screening Test To All Babies” Says Children’s Heart Charity
Pulse Oximetry is a test carried out using a small device which measures the oxygen levels in the blood. Currently some mothers receive this test after childbirth, but their children do not necessarily receive the test as well. This is despite an overwhelming amount of evidence which points to the possible benefits of doing the [...]
12/02/13 - Virendra Sharma MP -I support the AntiCoagulation Self-Monitoring Alliance (ACSMA) campaign
I give my full support and commitment to continue with supporting the AntiCoagulation Self-Monitoring Alliance (ACSMA) campaign, to increase access to self-monitoring via prescription for patients on long-term warfarin. I believe if patients are able to choose self-monitoring, then this would contribute in improving the quality of their care. ACSMA comprises four of the UK’s leading [...]
Feb 11st 2013 - Fundraising Star – Leah Carvell
Introducing our fundraising Star: Leah Carvell. Leah, along with her friends and family have set up a memorial fund to honour her brother David. The fund helps us to provide our Small Grant Scheme to help heart families all over the country. The fund has already raised over £5,000. Kate of the Children’s Heart Federation said: [...]
11/02/13 - Mature News – Simple home test can halve the risk of stroke and cut the risk of death for thousands of patients on warfarin therapy
MPs, clinicians and patients are uniting to drive change for patients on long-term warfarin A simple self-monitoring test could reduce the risk of stroke by half in thousands of people who currently take warfarin to prevent blood clots. Better access to self-monitoring of international normalized ratio (INR) levels, which measures how long it takes blood [...]
08/02/13 - PR Newswire – Simple Home Test Can Halve the Risk of Stroke and Cut the Risk of Death for Thousands of Patients on Warfarin Therapy
LONDON, February 8, 2013 /PRNewswire/ – MPs, clinicians and patients are uniting to drive change for patients on long-term warfarin A simple self-monitoring test could reduce the risk of stroke by half in thousands of people who currently take warfarin to prevent blood clots. Better access to self-monitoring of international normalized ratio (INR) levels, which [...]
08/02/13 - Andrew Gwynne MP – GWYNNE UNITES WITH patients and clinicians on warfarin therapy
Andrew Gwynne, MP for Denton and Reddish and Shadow Minister of State for Health, this week launched a campaign by the AntiCoagulation Self-Monitoring Alliance (ACSMA) to increase access to self-monitoring via prescription for patients on long-term warfarin. There are more than 1.2 million people in the UK on warfarin with approximately 1,690 of these in [...]
07/02/13 - Bromsgrove Standard – Rednal mum’s campaign for heart test that saved her son’s life
A REDNAL mum whose son’s life was saved by a simple post-birth test is urging residents to join the campaign to roll out the process to delivery suites nationwide. Michelle Eastwood was due to have her son Sam at home in August 2008, but was taken into the Birmingham Women’s Hospital when his heart rate [...]
05/02/13 - WellChild Awards 2013
Nominations for this year’s WellChild Awards have now opened. The aim of this event is to celebrate some of the UK’s most inspirational children and young people who every day live with the consequences of serious illness. The awards also recognise the dedication of the many health professionals who go that extra mile to really make [...]
05/02/13 - The Press – Charity challenges Archbishop of York over paediatric heart services support
A CHARITY has written to the Archbishop of York claiming he has “reinforced a misconception” by criticising an NHS review which could see children’s heart surgery stopped at a Leeds hospital. Dr John Sentamu supported the campaign for paediatric heart services to remain at Leeds General Infirmary (LGI) during a recent visit there, after the NHS Safe [...]
Jan 31st 2013 - Fundraising Star – Lucy Yates
Lucy Yates had always wanted to do a skydive, and having heard about the work that the Children’s Heart Federation does through a friend, she signed up to do a skydive and fundraise for CHF. Lucy’s family and friends came along to the airfield on the day to support her and see her jump. Lucy [...]
28/01/13 - Open Letter to The Archbishop of York about children’s heart services
The Most Reverend & Right Honourable Dr. John Sentamu, Archbishop of York The Office of the Archbishop of York Bishopthorpe Palace Bishopthorpe, York YO23 2GE 24 January 2013 Dear Dr Sentamu, We were pleased to learn of your interest in the review of paediatric cardiac services and of your support of the families of [...]
25/01/13 - Independent Voices – Closing children’s heart surgery units? Time to rethink your NHS ‘strategy’ Mr Hunt
These units do a tremendously important job – let’s not forget that By: MANUEL BARCIA 23 Jan 2013 A few days ago I took a couple of friends who were visiting us to a restaurant in Leeds. As soon as we sat, and even before I had an opportunity to look at the menu, I noticed a [...]
24/01/13 - Mobile Magazine – Contract and Sim-only deals for charity MVNO
Coverage or our new partnership with The People’s Operator; the new operator which donates some of its profits to charity.
23/01/13 - NATIONAL SURVEY ABOUT CHILDREN’S CARDIAC NURSES
What were you experiences of CLN/Specialist Cardiac Nurses at your surgical unit or local outpatient clinics? Do you know what one is? Have you met one? How have they possibly helped you? What aduuport would you like to see for families like yours? These are the sorts of questions which we want to hear [...]
20/01/13 - Siblings of Children with CHD Research
From Bangor University: Want to be involved in research looking at the experiences of siblings of children who have a life-long condition such as CHD? Research at Bangor University is seeking parents of children with conditions like CHD to answer a questionnaire about their experiences. The aim of the research is to better understand the [...]
17/01/13 - Duxford Family Event 2012 – Story & Gallery
When the U.S. Army Air Forces first arrived at RAF Duxford in 1943, they decided to hold a Christmas party for 500 local children. Sixty-eight years later, Duxford is now a museum, and the Air Force is still hosting a Christmas party for children sponsored by the 492nd Fighter Squadron from RAF Lakenheath. Every year [...]
20/12/12 - Winter Wonderland 2012 – Gallery
Every year The Children’s Heart Federation embark on our Winter Wonderland Adventure. The event is attended by families and it’s great opportunity to gain a little respite, make some good memories and meet other heart families.
11/12/12 - This is Surrey – Santa Cruise skate challenge planned by North Holmwood woman
Each of the skaters will don festive costumes on their longboards –an elongated, faster version of a skateboard – to help raise awareness of those with congenital heart defects. Ms Brown, of Hartswood, North Holmwood, said she and friend Sam Bonathan, of Farnborough, had been called “crazy” for taking part in the event, which will [...]
05/12/12 - Simon Wright MP – Norwich MP helping to mend Broken Hearts
Simon Wright, Member of Parliament for Norwich South has attended a summit in Parliament with leading heart charities to discuss how care can be improved for the hundreds of thousands of people in the UK who are living with heart conditions they were born with. Congenital heart disease affects 1 in every 133 children. It [...]
03/12/12 - The Yorkshire Times – Leeds Heart Unit – Legal Challenge Goes Ahead
The long- awaited hearing into the closure of Leeds General Infirmary’s children’s heart [surgery] unit will go ahead as planned. Attempts to delay a legal challenge to the closure of the children’s heart [surgery] unit at Leeds General Infirmary have now failed after a judge dismissed a bid to delay the hearing. Campaign group Save Our [...]
22/11/12 - Ascot Windsor & Eton Express – Dad getting skates on for 26-mile trip after daughter’s heart surgery
Proud dad Dean Lake is getting his skates on to raise awareness of a heart condition that left his baby daughter fighting for her life. Dean’s daughter Olivia, three, needed open heart surgery at the age of seven months. Now father-of-three Dean, 30, who lives near Woking, will be leading a group of more than [...]
16/11/12 - National Health Executive – Campaigners accused over heart surgery changes
The Children’s Heart Foundation (CHF) has criticised a potential delay to the judicial review of heart unit changes, following rumours that the Save Our Surgery campaign group is planning to “deliberately” halt its challenge to further delay planned changes to children’s heart services. The Save Our Surgery campaign was set up to oppose the unit [...]
07/11/12 - Andrew Gwynne MP – SUPPORTING GREATER CHOICE for patients to self-monitor
Andrew Gwynne is lending his support to a new campaign aimed at giving long-term warfarin patients greater choice in the management of their condition. The AntiCoagulation Self Monitoring Alliance (ACSMA) officially launched its campaign at a parliamentary reception in Westminster. There are more than 1.2 million people in the UK on warfarin, but fewer than [...]
31/10/12 - Children’s Heart Federation responds to CQC investigation into Bristol Children’s Hospital care
After a number of concerns over cases of poor care at Bristol Children’s Hospital and an unannounced inspection of the hospital by the Care Quality Commission (CQC) a number of issues have been raised about the level of staffing and training at the unit. The Children’s Heart Federation has raised its serious concerns about these [...]
30/10/12 - Children’s Heart Federation joins campaign for access to INR machines
CHF with a number of other national charities has formed The Anti-Coagulation Self-Monitoring Alliance (ACSMA). The Alliance is campaigning to see greater access, via prescription, to INR self-monitoring technology for children on warfarin. The alliance is also seeking to raise awareness of the benefits of self-monitoring and aims to ensure that families are better equipped [...]
17/10/12 - Children’s Heart Federation and new alliance launch campaign for greater access to INR self-monitoring
The countdown starts today to the launch of a new campaign aimed at giving long-term warfarin patients greater choice in the management of their condition. The campaign will be launch in the House of Commons on the 24th October 2012 The Children’s Heart Federation has supported children with heart conditions and their families for almost [...]
16/10/12 - CHF response to the Education Select Committee’s call for evidence -SEND
Draft legislation on Reform of provision for children and young people with Special Educational Needs Children’s Heart Federation Education Select Committee Submission Download as PDF 1. Introduction 1.1 The Children’s Heart Federation (CHF) is theUK’s leading children’s heart charity. It has 23 member groups from across the county which are comprised of local/regional [...]
16/10/12 - Galaxy
CHF have been chosen as one of Galaxy Chocolate’s Charities to Win a share of a £2,000 in October, November and December! You can help CHF win as much as possible every month. All you have to do is vote for CHF on their website. The more votes CHF get, the larger percentage of the [...]
27/09/12 - Now Wash Your Hands
October 15th 2012 marks the fifth Global Handwashing Day. While this campaign is primarily designed for developing countries where sanitation is sometimes poor it’s a good reminder of the vital importance of handwashing. CHF is supporting the Global Handwashing Day campaign because the sheer weight of evidence shows that good hand hygiene is key to preventing infections of all kinds, including [...]
23/09/12 - London Triathlon 2012 – Gallery
Check- out our Triathalon Gallery for 2012. With special thanks to all our runners including: Oliver, Sophie and Liz. Here’s what Sophie had to say: “I have started to make a bucket list and decided that doing something sporty for charity should be on that list. Reading The Metro one day, nestled amongst all [...]
17/09/12 - Crawley Happy Times – MP backs charity’s campaign to boost early diagnosis of children’s heart conditions
Henry Smith MP has this week backed a new campaign which seeks to increase early diagnosis of children’s heart conditions. Henry commented: “I’m delighted to support the Think HEART campaign as it’s clearly a fantastic cause. I’m helping to spread the message in Crawley to as many parents as possible so that we can increase [...]
17/09/12 - Bexley Times – Old Bexley and Sidcup MP James Brokenshire supports children’s heart campaign
A campaign aimed at increasing early detection of children’s heart problems has gained the support of Old Bexley and Sidcup MP James Brokenshire. The Think HEART campaign was launched by charity the Children’s Heart Foundation with the intention of warning parents of signs of a potential heart condition. Mr Brokenshire said: “I’m pleased to [...]
14/09/12 - Children’s Heart Federation Resource Wins BMA Patient Information Awards 2012
The Children’s Heart Federation and BHF won a joint award for best Long-Term Conditions publication at the BMA Patient Information Awards held at BMA House on Thursday 13th September 2012. The ‘Straight from the Heart’ resource is for young people aged between 13 and 19 who have an upcoming heart procedure in hospital. The resource [...]
13/09/12 - MP Tessa supports campaign to save children with heart problems
Local MP Tessa Munt, met Alex Smith, a parent whose child’s heart condition went undiagnosed for over two years, and has backed a new campaign which seeks to increase early diagnosis of children’s heart conditions. Tessa was pleased to support the HEART campaign launched by the Children’s Heart Federation that aims to inform parents of [...]
13/09/12 - Basingstoke Observer – Insurance Firm Martinez & Partners are supporting heart federation
Basingstoke business Martinez and Partners are this year supporting the Children’s Heart Federation, the top children’s heart charity. Rachel Evans, who works for the insurance brokers and has a heart condition, is passionate about supporting CHF’s work together with her colleagues. Rachel said: “The Children’s Heart Federation do great work supporting children who are unwell [...]
12/09/12 - Docklands & East London Advertiser – MP Jim Fitzpatrick in call for more heart diagnoses to save babies’ lives
Published: September 11 2012 The Poplar & Limehouse MP is backing a national campaign launched this week to increase diagnoses of Congenital Heart Disease after meeting a mother whose baby’s condition went undiagnosed for two years. “We must increase early detection and make sure children with heart problems get the correct diagnosis sooner,” he said. [...]
11/09/12 - MP backs charity’s campaign to boost early diagnosis of children’s heart conditions
MP backs charity’s campaign to boost early diagnosis of children’s heart conditions Gordon Henderson, MP for Sittingbourne and Sheppey this week met Alex Smith a parent whose child’s heart condition went undiagnosed for over two years and has now backed a new campaign which seeks to increase early diagnosis of children’s heart conditions. Congenital Heart [...]
11/09/12 - Chronicle Live – Washington and Sunderland MP backs heart defect campaign
Published 10th September 2012 A NORTH East MP is backing a new campaign which seeks to increase early diagnosis of children’s heart conditions, after meeting with parents of affected children in Parliament. Congenital heart disease is the most common birth defect, affecting more than 5,000 children in the UK each year. Despite the seriousness of [...]
10/09/12 - MP hosts Children’s Heart Federation Parliamentary Reception
Mike Penning, MP for Hemel Hempstead, hosted a Parliamentary Reception for the Children’s Heart Federation with constituent and CHF campaigner Alex Smith. Alex is a mother whose daughter’s heart condition went undiagnosed for over two years and she is now promoting a new campaign which seeks to increase early diagnosis of children’s heart conditions. Congenital [...]
07/09/12 - Alex Cunningham MP Backs Campaign to Boost Early Diagnosis
Stockton North MP Alex Cunningham is backing a new campaign which seeks to increase early diagnosis of children’s heart conditions after meeting Alex Smith, a parent whose child’s heart condition went undiagnosed for over two years. Congenital Heart Disease is the most common birth defect, affecting over 5,000 children in the UK each year. Despite [...]
04/09/12 - Todmorden News – Brave toddler faces open heart surgery
Published on Tuesday 4 September 2012 A TODDLER faces a third open heart operation as her battle to beat a rare condition continues. Evie-Mae Thorp, who is 17-months-old, is set for crucial surgery later in the year as doctors fear her health could soon deteriorate. Mum Carly, 19, said: “They will be inserting a plate into [...]
31/08/12 - Lancashire Telegraph – Brave Todmorden tot
Brave Todmorden tot facing critical third open heart operation Friday 31st August 2012 A TODDLER faces the fight of her life after being told she must have a third open heart operation. Brave 17-month-old Evie Mae Thorp is set for surgery any day in a battle for survival, as doctors fear her health could deteriorate [...]
22/08/12 - Report of the long term conditions, disability and palliative care subgroup
The Children and young people’s health outcomes forum has now published their final report. A number of points of interest, which have been included in the report and were raised by CHF in our response were: They push for greater collection of data in line with our response about those with LT health conditions including [...]
22/08/12 - No decision about me, without me – Consultation Response
Conclusion of the CHF Consultation Response from ‘No decision about me, without me – consultation’ Download the full response below. “The benefits of shared decision making are clear. Handing greater say to patients and involving them in their treatment improves the quality of healthcare they receive objectively, as well as improving their satisfaction with care as well [...]
22/08/12 - ACHD Review – CHF Feedback
Question 1 What do you think of our proposed model of organised care into networks of specialist centres, intermediate centres and local centres with links to non-cardiac care? 1. The need for earlier diagnosis of conditions Earlier diagnosis should be a major goal of the health system, not only is it of benefit to [...]
08/08/12 - Safe and Sustainable – Advice for Parents
A series of leaflets by NHS Specialised Services offering advice for parents affected by the changes to surgery under the Safe and Sustainable Review. NHS Safe and Sustainable Review – Advice for Parents in East Midlands NHS Safe and Sustainable Review – Advice for Parents in Yorkshire NHS Safe and Sustainable Review – Advice [...]
07/08/12 - Spectacular Spectacular Science Night!
Children’s Heart Federation have once again teamed up with London’s Science Museum to offer heart children and their siblings the experience of a lifetime by giving them the opportunity to camp overnight amongst the Science Museum’s amazing exhibits!
Aug 06th 2012 - Dragon Boat Challenge 2012 – Fundraising Stars
We are Very Pleased to Announce the Winners of our Dragon Boat Challenge 2012 Highest Fundraisers Award! Best Individual Fundraiser goes to Habed Hussain from the Bengal Vikings and Best Fundraising Group is Team Oscar, led by Julie Geue Prizes will be sent out to you very soon! Congratulations everyone and thank you so much [...]
01/08/12 - Paul is Up & Running
CHF’s very own runner with a Heart Paul Willgoss has been chosen as one of Up and Running’s ‘Running Aid a Chairty Runner Campaign’ Competition Winners. Paul has won a full set of running kit, help with his training plans and Up & Running will be promoting CHF and his Challenges! You can follow them [...]
27/07/12 - CHF Response to ACHD Review
Children’s Heart Federation contribution to ‘Improving everyday life for adults with congenital heart disease
25/07/12 - One Show – Exclusive Sneak Peek
The Smith’s and the BBC working to film a piece on Pulse Ox Screening for the One Show due to be broadcast soon.
24/07/12 - Children’s Heart Federation urges parents, clinicians and politicians to get behind NHS decision over Children’s Heart Surgery
The Children’s Heart Federation represents 23 UK-based voluntary organisations working for children and young people with congenital and acquired heart disease and their families. We cover the full spectrum of CHD, whilst our individual member groups concentrate on specific conditions or provide support in specific locations. We act as the voice of the CHD carer’s [...]
24/07/12 - Letter to the Editor of BBC Look North – Leeds Surgery
Letter to the Editor of BBC Look North with reference to coverage about Safe and Sustainable Decision and Leeds surgery.
19/07/12 - Special Award for Julie Wootton (CHF Chair)
Award from the International 22q Meeting 2012 News just in from Orlando, Florida. Julie was awarded the inaugural ‘Unsung Heroes Award’ for services to the 22q community. The award was presented to Julie today at the 8th International Meeting for 22q Deletion Syndrome. Well done! We are very proud of your work.
19/07/12 - My Hemel News- Georgina’s Mum Wins Backing From Local MP
MP Backs Think HEART
19/07/12 - My Watford News – Local Mum Receives Backing From Mayor
Local mum gets backing from mayor for Think HEART!
18/07/12 - WEBSITE- GREMLIN REPORT
Report gremlins and find out about the ones we’re working on.
13/07/12 - ACHD Review Young Peoples Engagement Event
Are you aged 15-21 living with congenital heart disease? If so, join us for a fun and interactive discussion session where you can make new friends and discuss your experiences of the NHS and what you think of your service. The NHS is currently reviewing the way care is provided for adults with congenital [...]
13/07/12 - Tackling Cardiovascular Disease: Priorities for the Outcomes Strategy – Report
The Children’s Heart Federation has contributed to the new ‘Tackling Cardiovascular Disease: Priorities for the Outcomes Strategy’ report from Cardiovascular Coalition and 4 All Party Parliamentary Groups. CHF’s contribution to the report stressed the importance of considering congenital and acquired heard conditions in children in any strategy dealing with cardiovascular conditions. It also stressed the [...]
09/07/12 - British 10k London 2012 Pictures
Check out the pic’s of the splendid CHF runners at the 10k in London.
06/07/12 - Safe and Sustainable Briefing
Briefing on the decision made by the Joint Committee of Primary Care Trusts on the future configuration of children’s congenital heart services, which includes a summary on next steps. Download Safe and Sustainable briefing 06 07 2012
04/07/12 - Children’s Heart Federation welcome decisions on children’s heart units and looks forward to future of improved care
Press Release – The Children’s Heart Federation, theUK’s leading children’s heart charity, has welcomed an end to the uncertainty about which units will continue to provide children’s heart surgery.
04/07/12 - View the Safe and Sustainable public meeting of the JCPCT (inc Docs)
View the Safe and Sustainable Meeting and get the agenda documents here.
03/07/12 - Leading Children’s Heart Charity welcomes the end to long period of uncertainty for families
Leading Children’s Heart Charity welcomes the end to long period of uncertainty for families For immediate release The Children’s Heart Federation, the UK’s leading children’s heart charity, welcomes the prospect tomorrow of an end to the uncertainty about which units will continue to provide children’s heart surgery. The long-awaited final decision of [...]
02/07/12 - Give a Car – we can make money from your old banger!
Turn your old car into cash for Children’s Heart Federation
02/07/12 - Brombsgrove Standard – Bromsgrovian Clint to run 10k for childrens heart charity
By Tristan Harris 02/07 Clint will be running the British 10K on Sunday (July 8). A BROMSGROVE man will be running the British 10K on Sunday (June 8) to raise funds for the Children’s Heart Federation (CHF) – a charity which supports children with heart conditions. Clint Eastwood chose the cause as it helped his own son [...]
Jul 02nd 2012 - Fundraising Stars: the Children of Kings Langley Primary School
The children designed, stuck, coloured and painted on heart worksheets that were sent home and raised a fantastic amount for the Children’s Heart Federation! The Chair of the PTA said: “We were absolutely thrilled with the number of entries we had for our Have a Heart competition. The children had put in so much time [...]
29/06/12 - Watford Observer – MP Backs Mum’s Awareness Campaign
News Clipping (Click image to enlarge in a new window)
29/06/12 - Safe and Sustainable Review decision due on Wednesday 4th July
With the long-awaited final decision of the Safe and Sustainable Review into children’s heart services due on Wednesday, The Children’s Heart Federation welcomes the end to the long period of uncertainty for families. CHF has been campaigning for improvements to UK heart care services for many years, particularly since the Bristol Baby Tragedy of the [...]
28/06/12 - Think HEART update
So far we have had over 80 fantastic parents join-in and help out campaign by putting up a few posters in their local area. A number of our parents have written to their MPs and local PCTs to ask them to help with the campaign. This has meant that in two areas all GPs are [...]
26/06/12 - Wimbledon Guardian – Eight times heart-surgery teen from Wimbledon to to run 10k
By Lauren May 3:59pm Tuesday 26th June 2012 A teenager with a serious heart condition is running 10k for charity despite having had surgery eight times to repair her heart and keep her alive. Emma Collins, 17, of Leeward Gardens, Wimbledon, was born with Tetralogy of Fallot, a heart condition which causes low oxygen levels in [...]
20/06/12 - Safe and Sustainable – Secretary of State’s advice on the Kensington and Chelsea OSC’s referral
The Independent Reconfiguration Panel has published its advice to the Secretary of State for Health regarding the referral by London’s Kensington and Chelsea Overview and Scrutiny Committee. The Secretary of State has accepted the IRP’s advice. The referral letter, IRP’s advice and the letter from the Secretary of State are attached. The press statement is [...]
07/06/12 - Evesham Observer – Pershore MP Backs Think Heart
By Nigel Slater 07/06 Updated: 07/06 16:17 Pershore MP Harriett Baldwin has backed a new campaign to help parents learn more about discovering potential heart problems in children. PERSHORE’s MP Harriett Baldwin has pledged her full support to a new campaign helping parents to spot early signs of heart problems for children. The MP recently met with [...]
01/06/12 - ACHD Stakeholder Workshops
Get involved with the series of stakeholder workshops to discuss the proposed improvements to services for adults with congenital heart disease (ACHD) in June 2012.
30/05/12 - Jon Cruddas MP – Think HEART
From the website of Jon Cruddas MP (member for Dagenham & Rainham) The think HEART campaign is an initiative that has been launched to raise awareness of Congenital Heart Disorder. Many Sudden Infant Deaths are caused by undetected Congenital Heart Defects, which this campaign hopes to change by teaching people to recognise the signs. Jon [...]
29/05/12 - Review of children’s heart services at the Belfast Health and Social Care Trust
Northern Ireland’s Health and Social Care Board (HSCB), in conjunction with the Public Health Agency, has asked an independent expert panel to carry out a review of children’s heart services at the Belfast Health and Social Care Trust. The review is to look at the safety and sustainability of the service provided by the Trust. [...]
23/05/12 - Watford Observer – Alexandra Smith addresses MPs about Ebsteins Anomaly
12:06pm Wednesday 23rd May 2012 in News by: Ben Endley Mum’s bid to raise awareness of heart condition MPs listened with rapt attention as a mother from Kings Langley made a passionate plea for greater awareness about her daughter’s rare heart condition. Alexandra Smith, 33, of Ridgeway Close, addressed politicians including shadow health secretary Andy [...]
20/05/12 - Think HEART Gallery – by Clare Bennett
Think Heart Parliamentary Reception gallery by Clare Bennett
19/05/12 - Think Heart Gallery – by Martin Smith
Think HEART Parliamentary Reception gallery by Martin Smith
18/05/12 - Duncan Hames MP Supports Think HEART
Duncan Hames supports charity’s campaign for early diagnosis of children’s heart conditions Posted on 18 May, 2012 Duncan Hames met with Corsham resident Lena Pheby during the Children’s Heart Federation event in Parliament Duncan Hames MP has backed a new campaign by the UK’s leading children’s heart charity, The Children’s Heart Federation, which seeks to increase [...]
18/05/12 - The Bolton News – Think HEART
Leigh MP backs HEART campaign 8:40pm Friday 18th May 2012 in North West A NEW campaign by the UK’s leading children’s heart charity to step up the early diagnosis of heart conditions for children has been backed by the Shadow Health Secretary, Leigh MP Andy Burnham. The Children’s Heart Federation has launched the Think HEART campaign [...]
08/05/12 - Express – OUR GIRL IS KEPT ALIVE BY A REMOTE CONTROL
Mia has been fitted with a device that grows with her/STUART MASON Tuesday May 8,2012 By Adrian Lee BORN with holes in her heart MIA PERSOGLIO has been fitted with a device that grows with her. Long before Natalie Persoglio’s first child was born she knew her little girl faced a battle for survival. While [...]
25/04/12 - Uxbridge Gazette – Harefield Hospital Trust must shell out £1.2m after losing court battle
Apr 25 2012 by Jenny Coombes, Uxbridge Gazette THE trust that runs Harefield Hospital will have to pay out £1million in costs, after losing a court case. On Thursday last week, a panel of Appeal Court judges overturned a previous ruling that a consulation carried out by another arm of the NHS into plans to shut a [...]
24/04/12 - Children’s Heart Week
We’re currently in the process of organising all kinds of fun events for CHW 2012 so periodically check back to make sure you don’t miss out.
23/04/12 - Heart week early detection forum and Parliamentary reception
This event will be held at The Diana Princess of Wales Memorial Fund at the old County Hall (by the London Eye) from 10am .
23/04/12 - Children’s Heart Week Family Weekend
Bring along the family to help close Children’s Heart Week at the CHF 2012 Family Weekend (19th & 20th May).
19/04/12 - UK’s leading children’s heart charity welcomes Court’s decision over Judicial Review Appeal
For immediate release The Children’s Heart Federation, the UKs largest children’s heart charity, welcomes today’s decision by the three Court of Appeal judges who found the JCPCT’s process for public consultation in respect of the review of paediatric cardiac services to be fair, lawful and proper. ”In the light of today’s judgement we urge [...]
19/04/12 - BBC London – Legal bid over Royal Brompton Hospital heart unit lost
Legal bid over Royal Brompton Hospital heart unit lost The Royal Brompton Hospital says closing the unit would be “bureaucratic vandalism” Continue reading the main story Related Stories Heart unit legal bid ‘premature’ Brompton wins heart surgery case Review into heart unit’s closure A consultation that led to the proposed closure of a paediatric heart [...]
19/04/12 - ITV London – Royal Brompton Loses Appeal
The Court of Appeal has decided that NHS consultations over the future of children’s heart services were lawful. The Royal Brompton Hospital launched a legal challenge, after the review led to proposals that their kids’ heart unit should be closed. Latest ITV News reports Hospital loses appeal 7:35 PM, THU 19 APR 2012 Royal [...]
18/04/12 - Any further delays to improvements in children’s heart services ‘extremely worrying’
For immediate release With the outcome tomorrow of the Appeal against the Judicial Review regarding Safe and Sustainable and the Royal Brompton Hospital, the Children’s Heart Federation, the UK’s leading Children’s Heart Charity, has voiced its concerns about the delays in the implementation of the higher standards of paediatric cardiac care recommended in the Safe [...]
02/02/12 - The Telegraph – Heart defect baby screening method ‘could save hundreds’
A new method of screening newborn babies for the most serious heart defects could save hundreds more lives a year, say scientists. Babies with potentially lethal heart defects can appear to be perfectly healthy. Photo: GETTY By Stephen Adams, Medical Correspondent 7:00AM BST 02 May 2012 Every year between 750 and 1,300 babies are born with what doctors [...]
07/11/11 - CHF comment on the outcome of the Royal Brompton Hospital Judicial Review
In the light of today’s ruling on the Judicial Review of the Safe and Sustainable Children’s Cardiac Review, CHF, the UK’s leading children’s heart charity, urges everyone affected by the decision to keep children with heart conditions and their families in the forefront of their thinking and push forward until new service standards for paediatric [...]
24/08/11 - Statement from CHF on the publication of findings from the Safe and Sustainable consultation
CHF, the leading UK charity dedicated to supporting children with congenital and acquired heart conditions and their families, welcomes the publication today (Wednesday 24 August 2011) of the analysis of the responses to the Safe and Sustainable Children’s Heart Services in England consultation. The findings reflect the respondents’ overwhelming emphasis on quality of service, which [...]
05/08/11 - Charity urges vigilance for heart defects missed by newborn screening
Children’s Heart Federation (CHF) welcomes the findings of the Pulse Oximetry Screening Study published in The Lancet on Friday 5 August 2011 and urges the NHS to introduce this test as a routine activity before newborn babies are discharged from hospital, as an important strand in the detection strategy for congenital heart disease (CHD) alongside [...]
26/07/11 - Statement from the Children’s Heart Federation about asking the Care Quality Commission for reassurance about the paediatric cardiac surgical service in Leeds
The Children’s Heart Federation (CHF) has written to the Care Quality Commission seeking reassurance that children’s heart surgery at Leeds is managed and delivered to consistently high standards to ensure that the long term quality of life outcomes for the children under the care of the unit reach the standards appropriate for UK paediatric cardiac [...]
18/07/11 - Children’s Heart Federation response to the consultation on the Green Paper: Special Education Needs and Disability – Support and Aspiration
Children’s Heart Federation (CHF), the leading UK charity and umbrella organisation for charities working to support children and young people with congenital and acquired heart disease (CHD) and their families welcomes the government’s impulse to improve the support for children with special educational needs (SEN) and disabilities. As a member of the Health Conditions in [...]
01/07/11 - The response of the Children’s Heart Federation to the consultation: Safe and Sustainable – A new vision for children’s congenital heart services in England
About Children’s Heart Federation The Children’s Heart Federation (CHF) is the leading national charity and the umbrella body for voluntary organisations working to meet the needs of children and young people with congenital and acquired heart conditions (CHD) and their families. Our vision is that all children with heart conditions have both their medical and [...]
22/06/11 - ‘Stalling the heart review will put children at risk,’ charity warns MPs
The Children’s Heart Federation (CHF), the umbrella organisation for charities supporting children and young people with a heart condition, has contacted all MPs in advance of the Adjournment Debate on the Review of congenital cardiac services for children in the Chamber on Thursday 23 June (Member in charge: Stuart Andrew) urging them to vote against [...]
04/05/11 - Comment from the Children’s Heart Federation in support of applying the Safe and Sustainable standards
The Children’s Heart Federation has been following the campaigns supporting children’s heart care at units around the country with respect and admiration for the passion, commitment and organisational skills of the parents, combined with a deep concern that in the rising wave of support for ‘Save Our Surgery’ lobbying, important issues are being drowned out. [...]
16/02/11 - ‘Being at sixes and sevens is good for children’s heart care’ asserts Children’s Heart Federation
The Children’s Heart Federation (CHF) is today urging politicians and healthcare practitioners to accept that being at sixes and sevens is good for children’s heart care, a reference to the need to reduce the number of active surgical units from ten to six or seven, in order to achieve the best possible health outcomes for babies [...]
14/02/11 - Charity chief warns Cameron, “Sticking to your guns on Big Society will blast a hole in services for sick children”
For immediate release, Monday 14 February Charity chief warns Cameron, “Sticking to your guns on Big Society will blast a hole in services for sick children” Anne Keatley-Clarke, Chief Executive of the Children’s Heart Federation, is warning today that by pushing ahead with his plans for the Big Society, without a proper impact assessment of [...]
07/02/11 - Children’s Heart Federation launches its 2011 partnership with Build-A-Bear Workshop
For immediate release – Monday 7 February 2011 Children’s Heart Federation (CHF) is launching its 2011 partnership with Build-A-Bear Workshop to help raise funds and awareness for children with heart problems at the Bournemouth branch of Build-a-Bear Workshop on 9th February 2011, when Coronation Street and Impressions Show star Debra Stephenson and a class of six year olds from [...]
01/02/11 - Bournemouth Daily Echo
“Television star Debra Stephenson made an instant impression on primary school pupils when she helped them create cuddly Valentine’s Day gifts for children suffering from congenital heart defects. The Coronation Street and Bad Girls actress took time off to visit the Build- A-Bear Workshop in Commercial Road, Bournemouth, where she met foundation year pupils from [...]
15/10/10 - Children’s Heart Federation comment on paediatric cardiac surgery at the John Radcliffe Hospital
For immediate release – Friday 15 October 2010 Children’s Heart Federation (CHF) accepts that in order to achieve the highest possible clinical standards in children’s heart surgery, there needs to be a reorganisation of the national paediatric heart care service that results in fewer, larger surgical units, each of which would have a team of [...]
04/10/10 - Consultation response on ‘Liberating the NHS’ White Paper
Response to: Equity and excellence: Liberating the NHS Vision We welcome all the elements of the vision of an NHS laid out at 1.10, except for ‘puts clinicians in the driving seat’. We contest the polarisation ‘clinicians good, managers bad’ advanced by this strategy. We support a competency-based approach to the National Health Service, [...]
29/07/10 - Take the ‘Make a Difference Mile’ challenge to help a heart child this weekend
29th June 2010 Children’s Heart Federation (CHF) is urging local people to help veteran runner,Paul Willgoss, make a final push to the finishing line of his twelve-month long-distance campaign to raise money for children with a heart condition by taking the ‘Make a Difference Mile’ challenge at the East Midlands Designer Outlet on Saturday 3 [...]
29/07/10 - Don’t scapegoat Oxford Heart Unit, urges charity
Children’s Heart Federation welcomes the continued suspension of the paediatric cardiac surgical service at the John Radcliffe Hospital until the outcome of the current Safe and Sustainable Review is known, and urges clinicians and health service planners to apply learning from Oxford across the national heart surgery service and to implement the agreed service standards, [...]
12/07/10 - White paper puts heart children at risk in scramble to save costs, warns charity
Children’s Heart Federation, the leading national charity supporting children and young people with a heart defect, warns that patients with the rarest conditions could suffer in the move to GP commissioning announced by today’s health White Paper. In all their years of general practice, family doctors may only see cases of a rare condition, including [...]
26/04/10 - Be part of the ‘Big Surprise’ in Children’s Heart Week
For immediate release 26 April 2010 Children’s Heart Federation, a group of charities working to improve the lives of children with a heart condition, invite local people to be part of the ‘Big Surprise’ during Children’s Heart Week, 8-16 May, by holding a ‘Teddy Bear’s Picnic’ or ‘Bring a Bear to Work’ day to [...]
26/04/10 - ‘Big Surprise’ during Children’s Heart Week
Children’s Heart Federation, a group of charities working to improve the lives of children with a heart condition, invite local people to be part of the ‘Big Surprise’ during Children’s Heart Week, 8-16 May, by holding a ‘Teddy Bear’s Picnic’ or ‘Bring a Bear to Work’ day to raise funds and awareness. While Election Fever [...]
01/04/10 - The Parliament Magazine
The Children’s Heart Federation was invited to contribute to the April 2010 issue The Parliament Magazine. This widely circulated publication reaches many of Europe’s key decision-makers. CHF took this unique opportunity to make the whole of Europe aware of our mission statement and to elicit support from individuals and organisations with mutual interests. We also used [...]
01/03/10 - The Telegraph – Ministers ignored safety warnings for years over children’s heart surgery
Ministers repeatedly ignored warnings about the safety of Britain’s child heart surgery units, it can be revealed. By Laura Donnelly, Health Correspondent 9:00PM GMT 06 Mar 2010 In 2001, a public inquiry into the deaths of dozens of babies at Bristol Royal Infirmary said cardiac units should be barred from carrying out paediatric surgery unless they met safety [...]
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