It is important that pathologists appreciate that specialist referral of tissue may provide a diagnosis, and a new inquest will help bring these matters into the public domain and to the public’s attention.

Lisa Browne died suddenly and unexpectedly on the morning of 10th January 1998. Lisa's parents, Doreen and Terry Harley, received a telephone call from their son-in-law saying Lisa, a nurse, aged 27 years, was being taken to hospital.  He had simply been unable to wake her that morning; he checked her pulse and breathing and found nothing.  An ambulance was called, but the paramedics were not able to resuscitate Lisa. By the time Doreen and Terry arrived at the hospital, Lisa had been pronounced dead.

Despite the doctor’s initial suspicions that Lisa had suffered from a heart attack, brain hemorrhage or had a deep vein thrombosis, the post mortem examination held on 12 January 1998 could find no obvious cause of death. In the pathologist's opinion Lisa should still have been alive.

At the Inquest hearing, 26 August 1998, the Coroner heard evidence from the Pathologist, and the court was told that an extensive post mortem had been carried out at the Coroner's request as no cause of death could be established. The Pathologist said "there was a slight possibility that Lisa could have had an electrical rhythm fault with her heart, which could not be detected after someone had died".  He went on to say “Lisa's death was not a unique case, in so far as there are approximately 4 cases of sudden adult death in the Cheshire area each year".  The inquest recorded an "open verdict" with the cause of death as "unascertainable".

In September of that year, Lisa's parents were sent an article about another family who had suffered a similar loss. The article mentioned the charity Cardiac Risk in the Young (CRY), and the work of cardiologists at St George’s Hospital on Sudden Cardiac Death syndromes, many of which are hereditary, can have few clear symptoms, and can be difficult to detect after death.

After contacting Alison Cox, founder and chief executive of CRY, Doreen and Terry started to suspect that Lisa was a victim of Sudden Cardiac Death, and were told that they should each be screened for inherited or congenital Sudden Death Syndromes. In December 1999, Dr Elijah Behr diagnosed Terry Harley with LQT2 syndrome. Dr Behr informed Terry and Doreen that it was therefore likely that it had been LQT2 which has caused their daughter’s death nearly two years earlier. To ascertain whether she had inherited the condition, they were told that genetic tests would have to be carried out on blood samples from Terry, and the coroner’s tissue samples from Lisa, which could take some years to release.

In December 2001 Terry’s blood test results confirmed that he had the abnormal HERG gene, which causes LQT2. Terry and Doreen were informed that their remaining daughter and her two young sons were ‘high risk’ candidates in terms of inherited LQT2, and in April 2002 were also diagnosed as having the condition. In July 2002 Chester Hospital released Lisa’s post mortem tissue to Dr Behr for genetic testing, to be carried out in Sweden, a lengthy process.

It was not until March 2005 that Dr Behr was able to confirm the presence of the abnormal HERG gene in Lisa’s sample. LQT2 had now been confirmed in five family members in three generations. It was at this time that Lisa’s parents requested a Judicial Review of the original inquest and that the verdict be set aside and the case reopened; a costly and complicated process, but one supported by Mr Nicholas Rheinberg, the Coroner for Cheshire, and brought by him on the family’s behalf.

A document prepared for the consideration of the Attorney General read:

“As will be apparent, the new evidence has become available by reason of the further enquiries initiated by Mr and Mrs Harley. They support this application for a new Inquest. There is now evidence available, which subject to scrutiny at a new Inquest, may very well establish the cause of their daughter’s death.

“It now appears that an Open verdict may well have been erroneous. Further and in any event the Coroner invites the Court to conclude that there is a broader public interest to be served in directing that another Inquest be held. The discovery of new evidence in relation to the deceased’s cause of death requires scrutiny at a public hearing for the following reasons.  If left undiagnosed and untreated, Long QT Syndrome can result in sudden and unexpected death, as so tragically occurred in the case of this young woman. If diagnosed the condition can be treated.

“In the case of the deceased her lethargy and feeling of ill health were wrongly attributed at one stage to depression and she was prescribed dothiepin. There is, however, a very distinct contra-indication for the prescription of dothiepin to someone suffering from a heart condition. An Inquest will assist in bringing these matters into the public domain. Further, there is a widespread view held by Coroners and pathologists that Long QT Syndrome is incapable of diagnosis post-mortem. The research carried out by Dr Behr demonstrates that this view is incorrect.  The syndrome is a genetic disorder. Post-mortem discovery has the potential to save the lives of others and it is important that pathologists appreciate that specialist referral of tissue may provide a diagnosis.”

In October 2005 the Harleys received confirmation that their application for Judicial Review had been granted, alongside a letter from the Coroner stating:

“Yesterday, I was informed that within the Attorney General’s Office, officials had recommended a refusal of our application for a FIAT.  It was apparently only upon the personal intervention of the Attorney General that the FIAT was granted, on the grounds that a public interest would be served by re-opening the inquest.”

Even then, the ordeal was not over. On 15 February 2006 the CRY office contacted the Harleys, saying that the press had called and were trying to contact the family. The case had been heard the previous day by the High Court without their knowledge - the Coroner’s office had also not been informed when the case was to be heard. Despite this insensitive irregularity, the news was good and the High Court had granted their request to reopen the inquest.

Mr Rheinberg, the Coroner for Cheshire commented, “Lisa’s inquest will be the first inquest I have had to re-open during my 14 years as a Coroner. Out of all the thousands of inquests held in the UK each year only about 25 ever need to be re-opened. This case is so important; the public have to be made very aware of Sudden Cardiac Death in the Young (under 35).”

Lisa’s mother Doreen said: “We, the family are obviously pleased and relieved that the inquest has been reopened. Hopefully now many other families can benefit from the knowledge LQT2 can be diagnosed after death and will be given the screenings where appropriate. That way family members can get the screenings that are so hugely important.”

-Ends-

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