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All Party Parliamentary action on SADS

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All Party Parliamentary action on SADS

 

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CRY APPG

Current members (75)

   

CRY Parliamenary Reception 2009
On October 21st CRY hosted its annual Parliamentary Reception at Westminster as part of its Raising Awareness Week.  We were delighted to have CRY Patron Phil Packer as Guest of Honour; and over 40 MPs attended the event.

All Party Parliamentary action on SADS

The feelings of bereaved parents finally to be recognised by the "system"
CRY has
applauded the launch of the reformed Coroners and Justice Bill which includes a number of important changes that will affect those people suffering from bereavement and facing complex and distressing inquests or inquiries.

CRY Parliamentary Reception 2008

On Wednesday October 15th CRY hosted its annual Parliamentary Reception at Westminster as part of its Raising Awareness Week.  We were delighted to have new CRY Patron James Cracknell OBE as guest of honour.

Cardiac Disease (Young People) debate - Westminster Hall, 10th June 2008

Kevan Jones MP - Chairman of the Cardiac Risk in the Young APPG - secured a parliamentary debate on cardiac disease in young people, in Westminster Hall.

Click here to download the debate in full

New Secretary of State "kicks off" CRY initiative to help young footballers

The Secretary of State for Media, Culture and Sport - Andy Burnham MP - joined CRY families whose children or partners died suddenly whilst playing football, to raise awareness of sudden cardiac death in the young at a launch at 11 Downing Street. 

CRY Parliamentary Reception 2007

On Wednesday July 11th CRY hosted its annual Parliamentary Reception at Westminster as part of its Raising Awareness Week.  We were delighted to have CRY Patrons David Walliams and Kathryn Harries as guests of honour. The event was attended by around 30 MPs who came to show their support for CRY’s campaigning. 

CRY All Party Parliamentary Group gains its 100th member

We are pleased to announce that the Right Honourable Don Touhig MP has joined the CRY All Party Parliamentary Group, and in doing so has become the APPG's 100th member. 

CRY Parliamentary Reception 2006

On July 5th CRY hosted its annual Parliamentary Reception at Westminster.  The event was attended by new CRY Patron David Walliams, along with many MPs and other guests.  Speakers included Andy Burnham MP, Annette Brooke MP, Tim Loughton MP and Dari Taylor MP.  more

CRY hosts Parliamentary Reception - 2005

On Wednesday June 15th, CRY hosted a Parliamentary Reception at Westminster as part of its Raising Awareness Week, and to help mark its 10th Anniversary.  The event was attended by more than 50 MPs who came to show their support for CRY’s campaigning.  Rosie Winterton MP, Dari Taylor MP and Tim Loughton MP all praised CRY in short speeches delivered at the event.  more

New NSF chapter debated at Westminster

The new NSF chapter on Arrhythmias and Sudden Cardiac Death was debated at Westminster on 9th June 2005.  During the debate, CRY's contribution to bringing about this new chapter was acknowledged by several MPs.  Steve Webb MP also made reference to CRY's postcard campaign; and Dari Taylor MP and Kevan Jones MP spoke at length about their involvement with CRY.

Click here to download the debate in full

Dari Taylor MP's 'proudest moment in Parliament'

In a Parliamentary Report sent to every home in her Stockton South constituency, Dari Taylor MP has spoken of her delight at seeing her Cardiac Risk in the Young (Screening) Bill lead to new NSF guidelines.

Click here to download Dari's report (PDF format - requires Adobe Acrobat)

New NSF chapter on Arrhythmias and Sudden Cardiac Death launched

The Department of Health announce the launch of the new National Service Framework chapter on Arrhythmias and Sudden Cardiac Death.  Health Secretary John Reid pays tribute to CRY for helping to raise awareness of the issue of Sudden Cardiac Death in young people

Click here to download a copy of the new chapter (PDF format)

Private Member's Bill - Cardiac Risk in the Young (Screening) Bill 
“I look forward to the opportunity the government is promising us . It is absolutely crucial that we keep the pressure up to maintain the focus on cardiac risk in young people. ” Alison Cox, Founder & Chief Executive. more including Q & A how a private members bill works, and a letter from Dari Taylor MP to CRY supporters

Department of Health Press Release
"I am delighted that the substance of my Bill has been adopted by the Department of Health, and we will see new guidelines and standards to prevent these terrible and unnecessary deaths." Dari Taylor MP

Click here to download consultation paper for the NSF chapter on Arrhythmias and Sudden Cardiac Death

Labour MEPs campaign to recognised sudden death syndromeEuropean success in campaign to recognise "Sudden Death Syndrome"
'Mission accomplished' Our campaign linking with MEP's Linda McAvan and Catherine Stihler and the World Health Organisation (WHO) to get an international code for sudden death syndrome conditions has been achieved.

All Party Parliamentary Group for Cardiac Risk in the Young
This All Party Parliamentary Group provides CRY with a crucial opportunity to get involved in the only place that is going to influence change - Westminster.
"At the end of the day these deaths are indiscriminate...It is something that must be addressed and has been swept under the carpet for too long." Ian Botham

Tim Loughton, MP for East Worthing and Shoreham

"That this House congratulates Cardiac Risk in the Young (CRY) on investing £300,000 to fund the setting up of a research centre for expert cardiac pathology at the National Heart and Lung Royal Brompton Hospital, including funding to facilitate the system of coroners' young sudden cardiac death fast track referrals to this expert centre; further congratulates CRY on its work to raise awareness of the second anniversary of the new Chapter 8 in the National Service Framework on Arrhythmias and Sudden Cardiac Death published on 4th March 2005, which aims to reduce the rate of eight cardiac-related deaths of fit and healthy young people a week; welcomes the launch on 6th March of the results of a recent survey of hon. Members and primary care trusts (PCTs) which indicated that there is increasing awareness of young sudden cardiac death and the issues pertinent to Chapter 8 as a result of the work of some hon. Members and PCTs; recognises the work of CRY's cardiac specialists and the development of CRY's sports and schools screening programmes; notes the donation of over £400,000 of cardiac equipment to general practitioner surgeries and hospitals; welcomes the development of a network of bereavement supporters; and looks forward to the next CRY Raising Awareness Week on 9th to 14th July."

Early Day Motion, March 13th 2007.  Click here to see MPs who have signed this EDM

 

Tim Loughton, MP for East Worthing and Shoreham

"That this House congratulates Cardiac Risk in the Young (CRY) on its work to raise awareness of the 1st anniversary of the new Chapter 8 in the National Service Framework on Arrhythmias and Sudden Cardiac Death published on 4th March 2005, which aims to reduce the average eight cardiac-related deaths of fit young people a week; welcomes the launch on 1st March of the results of a recent survey of primary care trusts, general practitioners and the public addressing issues pertinent to the new Chapter 8; recognises the work of CRY's cardiac specialists and CRY's sports and schools screening programmes, the donation of over £400,000 of cardiac equipment to general practitioners surgeries and hospitals and the development of a network of bereavement supporters; and looks forward to the next CRY Raising Awareness Week from 3rd to 8th July."

Early Day Motion, February 28th 2006.  This EDM has been signed by 127 MPs

 

Tim Loughton, MP for East Worthing and Shoreham

"That this House congratulates Cardiac Risk in the Young on their 10th anniversary this year; notes that their first CRY Raising Awareness Week is being held on 11th to 18th June; applauds its successful lobbying campaign for the Cardiac Risk in the Young (Screening) Bill which instigated the new chapter on Arrhythmias and Sudden Cardiac Death in the National Service Framework to be published on 4th March; supports their National Postcard Campaign highlighting eight young (under 35) sudden cardiac deaths a week; and recognises their achievements in setting up screening clinics at the CRY Centre for Sports Cardiology at the Olympic Medical Institute and at Leeds, Colchester and Northwick Park, the donation of over £400,000 of cardiac equipment to general practitioner surgeries and hospitals, the development of a national network of 21 trained bereavement supporters to help bereaved families cope with their tragedies and their Surgery Supporters Club for young people that have been diagnosed with a life-threatening cardiac condition."

Early Day Motion, March 2nd 2005.  This EDM was signed by 118 MPs.

EDM tabled again June 8th (following 2005 General Election) - signed by 158 MPs

 


Kevan Jones, MP North Durham & Chairman of CRY APPG

"
That this House congratulates CRY for raising awareness of Sudden Cardiac Death Syndrome; applauds CRY for the support it offers those who have suffered loss from sudden cardiac death; praises its promotion of heart screening as a simple way of diagnosing most cardiac abnormalities; notes the tremendous contribution CRY has made to medical research into Sudden Cardiac Death Syndrome"

Early Day Motion April 29 2004.  This EDM was signed by 108 MPs.


John ReidJohn Reid, Secretary of State for Health

"The new expert group on arrhythmia and sudden cardiac death will soon begin work on developing standards in an area that previously fell outside the scope of the National Service Framework"

 

Oliver Letwin MPOliver Letwin heeds parent's CRY

"We need to make the medical profession much more generally aware of potential heart problems in the young.

"It is clearly a worthwhile cause. There is almost nothing worse that can happen to you than to have one of your children drop dead suddenly without warning."

 

 

Andrew Murrison speech in the Cardiac Risk in the Young ‘Screening’ Bill (2004)
On Wednesday, those of us who attended the CRY reception met several people with first-hand experience of such covert conditions. I was reminded of my cousin, David Horn, who collapsed and died in his school playground when he was 10. As is invariably the case, the event had profound and enduring consequences for David's family. For his parents and grandparents, nothing was ever the same again. That experience was shared by several people at the CRY reception.
...We know that a great deal has been achieved by CRY. We know that a simple electrocardiograph helps enormously to distinguish the worried well from patients with problems. Electrocardiography may not yet be routinely carried out in all GP premises but there is no particular reason why it should not be. Reporting can, of course, be done elsewhere, or even, these days, automatically. CRY has provided a large number of ECG machines for that purpose, which I hope will encourage doctors to investigate symptoms that previously might not have been investigated.
 


Department of Health sponsor CRY for £100,000 over 3 years for counselling support

Public Health Minister Yvette Cooper, April 2002 "We are keen to support the CRY programme and I am delighted to report that Section 64 funding has been granted to CRY of £100,000 over the next three years for it's bereavement counselling. This is a very important initiative for CRY.  The support which families give each other is crucial at this difficult time.  I am pleased to see so many interested people here who want to know about this work.”  

 

Ivan Henderson interviewed by CRY for Kids Editor, Julie Tanner

I thought it was one of the most hard-hitting events organised in the House of Commons that I have ever seen.  Real stories by real people.  It was very touching, and it was good to have the announcements of the grant and to see some campaigns were coming to fruition.  By taking CRY to the House of Commons more MPs are now aware of its existence and the campaign

The CRY All Party Parliamentary Group at 11/05/2010


David Amess MP

David Anderson MP

Ian Austin MP

John Baron MP
Anne Begg MP

Dr Roberta Blackman-Woods MP

Crispin Blunt MP
Richard Burden MP
Andy Burnham MP

Simon Burns MP

Dr Vincent Cable MP

(Vice Chairman)

Rt Hon David Cameron MP

Douglas Carswell MP
Martin Caton MP

Rosie Cooper MP

Wayne David MP

David Davies MP
Rt Hon John Denham MP
Jim Dobbin MP

Rt Hon Jeffrey Donaldson MP

Jim Dowd MP

Nigel Evans MP

Paul Flynn MP

Dr Hywel Francis MP
Roger Gale MP  (Chairman)

Michael Gove MP
Chris Grayling MP

Stephen Hammond MP
Mike Hancock MP

Rt Hon David Hanson MP

Mark Harper MP

Dai Havard MP

John Hayes MP

Oliver Heald MP
Stephen Hepburn MP

Rt Hon George Howarth MP

The Earl Howe  (Treasurer)
Mark Hunter MP
Huw Irranca-Davies MP

Stewart Jackson MP
Kevan Jones MP

Eric Joyce MP

Alan Keen MP
Dr Julian Lewis MP
Tim Loughton MP 

Peter Luff MP

Kerry McCarthy MP

Austin Mitchell MP

Jessica Morden MP

Baroness Morris of Bolton

Greg Mulholland MP
Meg Munn MP

Dr Andrew Murrison MP

Sandra Osborne MP

Mark Prisk MP

Dr John Pugh MP
John Randall MP

Laurence Robertson MP

Andrew Rosindell MP

Chris Ruane MP

Bob Russell MP

Andrew Selous MP

Richard Shepherd MP
Mark Simmonds MP
Gisela Stuart MP

Gerry Sutcliffe MP
Mark Tami MP
Emily Thornberry MP

Joan Walley MP

Robert Walter MP

Mark WIlliams MP

Phil Wilson MP

David Wright MP

Iain Wright MP

Rt Hon Sir George Young MP

 

MPs with a special interest

Rt Hon Oliver Letwin MP

 

Hansard - Responses to Queen's Speech - 7th November 2007

Kevan Jones (North Durham): I want to discuss two issues that were omitted from the Queen’s Speech. When the hon. Member for North-West Norfolk (Mr. Bellingham) raised the issue of a coroners Bill, I was not pleased by the Lord Chancellor’s response. The Lord Chancellor implied that only the hon. Member for North-West Norfolk wants such a Bill, but many Labour Members want to see its introduction. The Bill exists in draft form, and it is long overdue, because we need to bring up to date the archaic coroner system in this country. The draft Bill followed an excellent report by the Constitutional Affairs Committee, which we debated earlier this year in Westminster Hall. The Bill would provide an opportunity not only to bring the coroner service up to date, but to tackle some issues that affect our constituents.

I chair the all-party group on cardiac risk in the young, and the charity Cardiac Risk in the Young is anxious to see the introduction of the coroners Bill. One issue is the need to introduce a system to ensure that when young people suddenly die of cardiac failure it is properly investigated and the statistics, which can influence the debate, are kept. At the moment, the problem is that the sudden deaths of young people are investigated differently in different jurisdictions. Such cases are, for example, sometimes put down to drowning. In areas in which coroners are proactive, there is not only support for families, but the death is registered as a cardiac death. That is important because CRY estimates that eight young people a week die of sudden cardiac failure, and only a coroner system where such information can be held centrally will allow us to argue the necessary case for screening in the health service for young people who do sports. I hope that there is time during the Session to introduce a coroners Bill because I and many others would welcome it.


Hansard - House of Commons Daily Debates - 27th June 2002

Mark Tami (Alyn and Deeside): Is my right hon. Friend the Leader of House aware that, every week, four to eight apparently fit and healthy young people die of undiagnosed heart problems in the United Kingdom? The charity CRY—Cardiac Risk in the Young—is a self-supporting group that campaigns to increase awareness of this important issue. Will he allow for an early debate on the subject, and will he support the efforts of Doreen Harley of Connah's Quay, who lost her daughter Lisa to sudden death syndrome, and those of the Chronicle newspaper to raise funds to provide screening for hundreds of young people in north Wales?


Mr. Cook:
I am aware of the organisation CRY, with which I have had contact in my constituency. I congratulate those parents who have discovered that they have offspring with heart failure on their work both to publicise the risks to young children with undiagnosed heart problems and to raise funds to take that cause further... The more children in such a position who are aware of it, the better able they will be to adjust to life and to ensure that they are not exposed to unnecessary risk

 

Hansard Parliamentary debate Heart Disease (young people 21st June 2001)

Dr Julian Lewis (New Forest, East):  I wish to do justice to a fine young man who I am proud to have as one of my constituents.  His name is Adrian Woodhead.  Adrian was married to Sarah and they were together for 10 years until, in 1997, just before Christmas, Sarah, who at the age of 28 had never been ill, had been very fit and was a non-smoker, suffered a massive heart seizure and died.  

Gareth Thomas
MP highlights the dangers of Cardiac problems in the young April 2002

Mr Thomas said “I know from personal experience just how quickly this syndrome strikes and how completely unexpected it is..."

 

Parliamentary Reception April 2002 to launch the CRY Centre for Sports Cardiology at the British Olympic Medical Centre

Dr Liam Fox
, “I believe this (Centre) is the first of its kind, and needed. I'm delighted to be associated with such a worthy initiative - the area of sudden cardiac death resonates personally with me.  I'm very pleased to see so many people here, and it should be viewed as a testament to Alison and all those who work and are part of CRY that the vision of such a Centre has been fulfilled."

Rt Hon Richard Caborn

"We have many excellent facilities and staff in the sports medicine field.  This centre will enhance those resources significantly.  The work of Cardiac Risk in the Young will save many young lives and that in itself is wonderful news."

 

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