A mother is urging people to join a campaign against Government cuts which could have a 'devastating effect' on bereaved families.

Doreen Harley, 62, from Connah's Quay, is supporting Cardiac Risk in the Young's (CRY) petition asking the Government to re-think changes to the Coroner's Service following her own experiences after the sudden death of her daughter in January 1998. 

The coalition Government is planning to axe the role of chief coroner but the charity is concerned that without this crucial leadership national standards would not be met and this would lead to serious failures in the system. 

Doreen's daughter Lisa Jane Browne, from Ellesmere Port, died in bed after the shock of a ringing alarm clock woke her suddenly in January 1998, 

DNA tests by Swedish scientists later proved that the 27-year-old, who worked as a paediatric nurse at the Countess of Chester Hospital, had the rare disorder Long QT Syndrome. 

The hereditary condition affects the electrical system of the heart and can cause sudden death in young people. 

Doreen suspects this was what killed her daughter and campaigned for the inquest to be reopened and the cause of death changed. 

"No on can understand the pain and total devastation of losing a child or partner at a young age suddenly and without warning," she said. 

"Although the days and months that follow are often a blur, you still want answers and you want them fast." 

At the original inquest in August 1998 the coroner recorded an open verdict after finding the cause of death unascertainable.  After an eight-year battle to reopen the case, a second inquest ruled that Lisa died from heart failure due to Long QT Syndrome.  Coroner for Cheshire, Nicholas Rheinberg, recorded a verdict of death by natural causes." 

Speaking after the inquest, Mrs Harley said she hoped her eight-year battle to discover the real cause of her daughter's death would help save the lives of theirs. 

After Lisa's death it was discovered that her father Terry, sister Rachel and nephews Jack and Adam all had the illness. 

The causes of sudden young cardiac death, many of which are genetic, are treatable and most people are able to live a relatively normal life. 

But Doreen thinks that the Government needs to do more to prevent more young people losing their lives. 

She said: "There are at least eight deaths a week to sudden young cardiac death, the majority of which could be prevented if there was a national screening programme for all teenagers at around the age of 14 years. 

"How many more young people have the lose their lives before the Government will agree to finance the necessary screening?" 

Doreen is also concerned that changes to the Coroner's Service could be devastating to families facing a similar situation. 

"Thankfully the majority of families are treated with great sensitivity," she said. 

"But sadly for some the experience has been appalling. 

"Many have had to wait months or even years to find out a cause of death and their concerns have been treated with little respect. 

"We deserve a Coroner's Service to help us understand the cause of dearth of the person who has died. 

"Families like us must be kept informed and consulted and their feelings, wishes and expectations must be listened to." 

Cry, which offers specialist bereavement services after the sudden death of young people from undiagnosed heart conditions, has launched the petition, which will be hand delivered to 10 Downing Street on March 3 and is aiming for 50,000 signatures. 

CRY chief executive Alison Cox, CBE, said: "We know how important the role of the chief coroner is going to be in empowering the appeals process. 

"Without anyone to oversee this ancient judicial system it will be impossible to enforce national standards, leaving our current, antiquated inquest system unfit for the 21st century. 

"For the sake of bereaved families, we cannot allow the Coroner's Service fall victim to the current spending cuts."   

FACT FILE - LONG QT SYNDROME

In sufferers of Long QT Syndrome, the recharging of the electrical system after each heartbeat is longer than normal. 

This may result in a very fast, abnormal heart rhythm called torsades de pointes. 

When this rhythm occurs no blood is pumped out from the heart and brain quickly becomes deprived of oxygen, causing sudden loss of consciousness and in some cases sudden death. 

Symptoms typically begin in pre-teen to teenage years, but may occur in newborns and can appear as late as middle age. 

Characteristically, the person suddenly faints or passes out during exercise of when experiencing intense emotions, such as fear, but it can also occur during sleep or arousal from sleep.

There is usually no warning or sensation of feeling faint or dizzy beforehand.  In one in three cases which result in deaths, the person appears quite fit and healthy, with no symptoms at all before cardiac arrest. 

Several different genetic problems may cause the condition.  But while the genetic abnormality has been identified in some cases, in others the faulty gene has yet to be discovered. 

The syndrome, which affects about one in 10,000, is usually diagnosed through an ECG (electrocardiogram - a test that measures the electrical activity of the heart.)    

Beta-blockers are effective in controlling the condition in most cases, but some people need treatment with a pacemaker and implantable defibrillator. 

In those families where the genetic abnormality has been identified, it may be possible to do pre-natal genetic tests for that specific mutation.