20th January 2009
Leading heart charity applauds the launch of the reformed Coroners and Justice Bill
The Chief Executive of a charity – dedicated to supporting parents, partners and children who have lost a young (age 35 and under) loved one suddenly – is today (Tuesday January 20th) welcoming reforms to the new Coroners and Justice Bill.
The long awaited amendments to the Bill include a number of important proposals such as witness anonymity, prevention of criminals making money from their memoirs and plans to re-introduce secret inquests in the interest of national security.
However, important changes have also been made which will affect those people suffering from bereavement and facing complex and distressing inquests or inquiries.
Alison Cox MBE, Chief Executive and Founder of the charity, Cardiac Risk in the Young (CRY) says; “The new amendments to this important Bill mean that those people who find themselves in the devastating and tragic position of suddenly losing a young child or partner without warning or explanation will have access to a Coroners Service that will keep them fully informed and consider their needs at this most grievous time.”
She adds; “In the past, there have been too many reports of indifferent treatment and lack of consideration for those affected by a young sudden death. Many have had to wait months, or even years to find the cause of death. Some have been treated insensitively including well-publicised cases where pathology has been undertaken on the hearts of the deceased without permission from their families.
“A review of the Coroners Service was well overdue and we are very pleased that the needs of bereaved families affected by conditions such as sudden cardiac death will now be addressed by a regulated service, giving people rights to information and proper investigation of the cause of death. Most importantly, a simple appeals system will ensure there is ongoing scope for the bereaved to be heard and for further improvements to be made.”
The new Bill, which was officially unveiled last week (January 14th) will see an amendment to the laws relating to coroners and to the certification and registration of deaths.
CRY has long been campaigning for greater recognition of the genetic conditions that cause sudden death in apparently fit and healthy young people and, since it was founded in 1995, has played a crucial role in efforts leading to the syndrome being given an official ‘title’.
It is widely accepted (as was the case when ‘cot death’ or sudden infant death syndrome (SIDS) was officially recognized) that it has only now become possible for GPs, cardiologists and coroners to gain a full understanding of the scale of the problem and to ensure that diagnosis and access to screening is improved.
In March 2008, CRY opened a specialist laboratory – the CRY Centre for Cardiac Pathology – at the world famous Royal Brompton Hospital dedicated to funding fast track, expert referrals for coroners when young sudden cardiac death is suspected.
Supported at its launch by HM Coroner Michael Burgess and the Coroners Service, this pioneering new centre will help to unlock the tragic mystery behind these sudden deaths, whilst continuing to ensure that families receive a swift and accurate diagnosis of the cause of the tragedy.
And, late last year (December 2008) CRY backed the establishment of a new national pathology database which will provide vital information about the frequency and demographics of sudden cardiac death, as well as an assessment of families linked to these tragic conditions
Alison Cox adds; “This carefully crafted reform Bill and accompanying ‘Charter for the Bereaved’ will ensure that people who suddenly find themselves in contact with the Coroners Service are helped to understand the cause of death and any potential genetic risk; are kept properly informed and consulted about the procedure; and most importantly, that their feelings, wishes and expectations are treated sensitively at all times. This really is reform!”
New figures [ONS] recently released by CRY show that the estimated number of young people who die suddenly every week in the UK from previously undiagnosed heart conditions is now thought to be 12.
CRY works with and supports hundreds of families across the UK who have been devastated by this tragic condition. Journalists are invited to contact the CRY press office to find out if a family within your region has been affected and is willing to share their experience to help raise awareness of the charity and of the importance of screening.
The Cardiac Risk in the Young All Party Parliamentary Group (APPG) now has 112 members, including the Secretary of State of Culture, Media and Sport, The Rt. Hon Andy Burnham MP. Please contact the CRY press office to find out whether your local MP is a member of this group and if they are actively involved in supporting the charity in your area.
For further information, please contact Jo Hudson in the CRY press office on 020 8786 3860 / 0770 948 7959 firstname.lastname@example.org
Notes to editors:
The Coroners and Justice Bill will:
amend the law relating to coroners and to certification and registration of deaths; to amend the criminal law; to make provision about criminal justice and about dealing with offenders; to make provision about the Commissioner for Victims and Witnesses; to make provision relating to the security of court and other buildings; to make provision about legal aid; to make provision for payments to be made by offenders in respect of benefits derived from the exploitation of material pertaining to offences; to amend the Data Protection Act 1998; and for connected purposes.
CRY was founded in May 1995 to raise awareness of Sudden Arrhythmia Death Syndrome (SADS). As well as campaigning and lobbying and the provision of its subsidised cardiac screening programme for young people (35 and under), the charity also provides counselling support to bereaved families and individuals who may be diagnosed.
CRY works closely with a number of MPs to try and improve awareness of sudden cardiac deaths in young people. This has resulted in the creation of the CRY All Party Parliamentary Group (currently 112 members), and the proposal of the Cardiac Risk in the Young (Screening) Bill which was the catalyst for a new chapter of NSF guidelines (Chapter 8).
Sudden Cardiac Death (SCD) is an umbrella term for a number of different heart conditions that affect fit and healthy people which, if not treated, can result in a dramatic and or / spontaneous death. In about one in 20 cases of sudden cardiac death, no recognised cause can be found – even after post-mortem. This is then called Sudden Arrhythmic Death Syndrome (SADS). Many experts are now claiming that the actual number of deaths recorded could just be ‘the tip of the iceberg’ with many causes being wrongly recorded as asthma, epilepsy or even drowning.