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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.
ENDS
For further information, please contact Jo Hudson in the
CRY press office on 020 8786 3860 / 0770 948 7959
jo.hudson@trinitypr.co.uk
Notes to editors:
The Coroners and Justice Bill will:
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.
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