Stride with SADS UK in Hyde Park, London to raise awareness and funds to STOP SADS on 13th September 2020. Find out more here
Latest update on the coroner reform aspects of the Coroners and Justice Bill - 27th May 2009READ MORE
3rd December 2008Coroners and Justice Billupdate
1st August 2006Constitutional Affairs Committee (CAC) publish Report of Inquiry into Reform of Coroners System and Death Certification
12th June 2006Department for Constitutional Affairs publish Draft Coroner Reform Bill
February 2006Department for Constitutional Affairs (DCA) proposals for reform provided in Ministerial Statement to House of Commons by Harriet Harman
January 2006Constitutional Affairs Committee launch an inquiry into 'Reform of Coroners System and Death Certification'
June 2005The responsibility for the Coroners Service is transferred from the Home Office to the Department of Constitutional affairs.
March 2004The Home Office (HO) set out a Position Paper on the proposed reform
July 2003Third Shipman Report, chaired by Dame Janet Smith
June 2003The Report of a Fundamental Review, chaired by Tom Luce
July 2001Fundamental Review of Death Certification and Investigation initiated
Letter to Tom Luce, Chairman , Review of Coroners , Coroners Section , Home Office , 50 Queen Anne's Gate , LONDON , SW1H 9AT
Date 8th Nov 2001
Re: Sudden Adult/Arrhythmia Death Syndrome (SADS)
The above Trust was formed after my fit and healthy son Ashley went to bed one night and didn't wake up the next morning. I have been contacted by many distraught people who have experienced the tragedy of an apparently fit and healthy young person dying suddenly and unexpectedly. The grief of some of these people has been exacerbated by receiving verdicts for the death of their 'loved one' that they find difficult to believe. The enclosed news extracts state that where the cause of death could not be found pathologists may have been recording verdicts of epilepsy, pneumonia and asthma.
The Royal Brompton Hospital have carried out a study regarding Sudden Adult Deaths. Their initial findings indicate that they believed there could be up to 4,000 deaths each year of apparently fit and healthy young people under the age of 35.
I have been informed that where death certificates contain a mention of Sudden Adult Death Syndrome, these are classified by the Office for National Statistics under the ICD code 798.1 (instantaneous death, cause unknown). In 1999 there were 35 deaths recorded under this code. I understand that this underestimates the number of SADS deaths, as these could be classified to a number of codes, and there is no agreed mechanism for the recording of SADS on death certificates or by coroners. I find it difficult to believe that no protocol has been put into place to record these important deaths.
The SADS Trust would like heart screening to become standard practise in the doctor's surgery to detect individuals with heart abnormalities. The Trust feels that the numbers of young people falling victim to SADS are alarmingly high and the risk could be radically diminished, as it is known that once heart conditions are detected many of these conditions can be effectively treated, often by simple medication.
I believe an important part of the evidence needed to support this heart screening programme is accurate statistics regarding the numbers of young people tragically dying suddenly and unexpectedly and where no cause of death can be found.
The National Screening Committee and Children's Health sub-group are meeting in Autumn to consider the evidence for heart screening our young people. I have written to Professor Aynsley-Green, the National Director of Children's Services to advise him that I do not believe accurate statistics detailing the number of young people falling victim to SADS will be available.
Despite accurate statistics not being available, from the volume of people who contact the SADS Trust I think urgent action needs to be put into place to initiate a screening/testing/research programme to safeguard our young people and give them a chance to reach maturity.
To endorse the value of testing the hearts of our young people and to validate funding research into SADS it is imperative that more accurate statistics are obtained and these deaths are acknowledged.
I look forward to hearing from you.
7th November 2008
Launch of the sudden Cardiac Death pathology database
Monday 16th November 2009 UK: Coroners and Justice Bill receives Royal Assent. Read more.
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