Belfast Telegraph

Brave cancer victim let down by Health Service, says family

by Bob Malcolm

The wife and family of an east Belfast man who died of a rare cancer on Christmas Day, 2010, believe he was let down by the Health Service.

They have begun work to increase awareness of the cancer and to get Northern Irish sufferers the specialist care they need — and they’re doing it all on their own.

There are approximately 80 families in Northern Ireland who suffer from Neuroendocrine tumours (NET).

The NET Patient Foundation allege that it can take between five and seven years to get a proper diagnosis and that over 90 per cent of NET patients are incorrectly diagnosed and treated for the wrong disease.

Steven Dawson, a coach builder from Dee Street, was just 30 when he died of an aggressive form of NET.

His family say he did not receive the specialist care he needed in Northern Ireland. They say he was not diagnosed with an NET until July 2010, six months after he first saw a doctor.

Originally he was given laxatives for four months and then diagnosed with lymphoma.

His wife Lesley Dawson, whom he married on August 28, just four months before his death, said: “Steven was taken in for an operation to have the growth in his abdomen removed, three weeks later was when we were told it was an NET. Apparently many of these are slow growing and are usually found in autopsies.

“Steven had a rare, fast growing and aggressive form. There was so little information the doctors didn’t know how to treat it.”

She added: “Professor Johnson, from the Royal was allegedly the only person in Northern Ireland who knew anything about NETs.

“Steven was then referred to the Cancer Centre and he was treated in the same way as someone suffering from lung cancer.

“There is a drug, Interferon, I found out about it from searching the internet and a man in the Royal Free Hospital was getting it.

“We know the tumours are incurable but apparently this drug is helping keep this man’s tumour at bay.

“We asked the doctors here about it but they said it wouldn’t work, even though they were treating him as a lung cancer patient.”

Steven’s father, John Dawson said: “We feel he was treated as a guinea pig, unfortunately. He might have been better off if he had been born in England. In the Royal Free Hospital in London there are specialists who could have helped him.

“What gets to us the most is that they didn’t do enough for him — there was no decent quality of life for what time he had left,” he added.

His wife, Liz said: “Our main aim is to try to raise awareness of this cancer. None of us would wish what we’ve been through on anyone else.

“There are no charities here for NETs. Our aim is to set up a support group or forum so that people can get the information they need.”

Lesley added: “It’s all in its early stages but we are setting up a lot of fundraising. We have our Just Giving page, we’re doing a night at the races, a golf tournament and a bike race from Belfast to Carrick, and anything we raise we want to be spent in Northern Ireland to help people here.”

To donate see: www.justgiving.com/|LESLEY-DAWSON0

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