Families at risk from a rare form of heart failure will be offered free genetic tests to pinpoint the threat, the Government announced yesterday.
The move marked a personal triumph for North-East MP Dari Taylor. Ms Taylor, MP for Stockton South, persuaded the Government to adopt her proposals to reduce the death toll from rare heart defects.
The backbench Labour MP threatened to push through a Private Members Bill to improve screening last year after winning the support of more than 100 MPs and the backing of charity CRY (Cardiac Risk in the Young).
But after the Government offered to set up an expert group to look at changing national guidelines on the diagnosis of sudden cardiac death, she withdrew her bill.
Yesterday, Health Secretary Dr John Reid announced the new measures at a conference of heart specialists in Birmingham. Crucially, it included a plan to help vulnerable families. It proposed genetic testing in cases where a sudden unexplained cardiac death occurred. If a risk is found, family members will be given an implant that will help prevent further tragedies.
Last night, Ms Taylor said: “The Government has gone even further than I had hoped. I feel quite thrilled.”
She immediately paid tribute to the parents of Levon Morland, the 22year-old from West Rainton, County Durham, who collapsed and died as the result of a rare heart syndrome three years ago.
“It was Levon’s death that started this all off and his parents, Geoff and Sandra, have played a vital role in all of this. ” said Ms Taylor.
Levon Morland was diagnosed at the age of 12 with a rare heart defect, but no one told his parents that he might die at any time.
Commenting on the new measures announced yesterday, Mr Morland said: “Fantastic. Exactly what we were looking for. I am absolutely thrilled.”
Another North-East family affected by suspected cardiac death syndrome are the relatives of AnneMarie and Daniel Readshaw, from Ferryhill, County Durham. The sister and brother, who died in drowning accidents two years apart, were probably victims of Long QT Syndrome, a very rare heart defect that can cause instant death. Better screening may have saved Daniel by detecting the defect.
Pat Conroy, grandfather of AnneMarie and Daniel, said: “If any boy or girl faints, they should be checked out.”
Alison Cox, chief executive of CRY said: “CRY welcomes the announcement and believes this is a good start towards gaining wider access to screening for young people.”
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New NSF Chapter on Arrhythmias and Sudden Cardiac
Death –
Press release
