10 February 2006

Special nurse offer rejected

Belfast Telegraph

Hospital turns down move by tragedy family

By Nigel Gould
10 February 2006

A charity offered to pay for a specialist nurse for a heart condition that has become the biggest medical cause of sudden death in young people but Northern Ireland's biggest hospital turned it down because it could not guarantee further funding, the Belfast Telegraph can reveal today.

Now Ulster families affected by cardiomyopathy - a disease of the heart muscle that is often inherited - are urging the Royal to reconsider its decision.

The Cardiomyopathy Association, a leading UK charity that supports families affected by the condition, said it had made available £40,000 for a two-year post at the Royal.

However, the hospital told the Belfast Telegraph that while it was very supportive of the introduction of such a service, it could not guarantee recurrent funding for such a post at this time.

But a spokeswoman stressed that the hospital would welcome further opportunities to discuss with the association "other options for our patients."

Ulster couple Sam and Amanda Graham, who lost their daughter, 14-year-old Rebecca last July to hypertrophic cardiomyopathy - the biggest medical cause of sudden death in the under 35s - said a nurse specialist was important.

Rebecca, a pupil at Sullivan Upper School, in Holywood, experienced dizziness and fainting, symptoms of the condition from the age of 12 but was not diagnosed for a year.

Sam and Amanda, from Newtownards, said: "When Rebecca was alive we did not know enough about her condition or the different treatments available. We only found out the true situation after she had died.

"A nurse specialist would have had time to sit down with us to discuss the full implications of the condition and all the options open to her and been able to give us more support through this very difficult time.

"We think such a nurse would have been of great benefit to us. We were a family with no experience of hospitals and we were finding it difficult to come to terms with a condition we knew nothing about."

In the Graham family, both Amanda (39), an executive officer at Dundonald Primary School, and Rebecca's brother Matthew, who is 12, have been screened clear.

But Sam, a 41-year-old facilities manager at Sullivan Upper School, Holywood, has also been found to have the condition. He is on medication and since Rebecca's death has had an internal defibrillator fitted. It will shock his heart back into life if it is in danger of stopping.

The Grahams said: "Rebecca was told her heart was not in danger of stopping. She just needed to avoid strenuous exercise, such as netball and rounders. But she died after feeling ill in bed one evening. We have since found out that other young people have died too when they are resting."

The Cardiomyopathy Association said that since October it has been seeking a meeting with health chiefs at the Royal to discuss other options.

Chief executive of the Cardiomyopathy Association Robert Hall said: "We already fund a nurse specialist post at the Heart Hospital in London and one shared between the Western Infirmary, Glasgow, and the Royal Alexandra in Paisley.

"Both of our nurses do invaluable work helping families with cardiomyopathy. We want to extend this service to the Royal."

Mr Hall will be in Belfast to address an information meeting tomorrow in the Park Plaza Hotel in Belfast which is being held by for families affected by cardiomyopathy in Ireland.

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