One in five young adults with congenital heart disease may be dying unnecessarily because they are not being given the specialist care they need, a leading cardiologist has claimed.

As a public inquiry probes the deaths of babies who underwent heart surgery at the Bristol Royal Infirmary, the BBC has uncovered evidence that throughout the country the lives of those who survived cardiac operations are being put at risk.

With advances in surgical techniques pioneered over the last 40 years, the vast majority of children born with congenital heart defects can live a fairly normal life.

But for some complications develop in their late teens and early adulthood.

It is estimated there are some 50,000 Guchs, or Grown Ups with Congenital Hearts.

Their problems are compounded by the fact that there simply are not enough specialist doctors trained to deal with their needs.

Dr Jane Somerville fears people are dying unnecessarily

Consultant cardiologist Dr Jane Somerville set up the first specialist Guch service in the country 25 years ago and is widely held to be one of the world's leading experts.

Dr Somerville estimates there are up to 7,500 Guch patients with serious complications. She believes many are dying unnecessarily.

She said: "We can collect many errors of medical mismanagement and horror stories - I call them the grim Guch tales and at the moment I am collecting them."

Dr Somerville has done a survey of the deaths of patients with Guch complications.

"In one in five there is an error of mismanagement," she said.

"There is an identifiable error of management so one presumes that one might delay their deaths, or be able to stop them becoming disabled."

Alarm bells

Mary Poskett was threatened by her GP

The problems faced by Guch patients were graphically illustrated by the case of one of Dr Somerville's patients, Mary Poskett.

A routine test three years ago revealed that Mrs Poskett had a dangerously high pulse rate.

She said: "During the course of the exercise test the bells rang.

"The doctor read the results, popped away, came back and said you need a heart transplant. I didn't know what to say."

However, the doctor told her it was safe for to go on holiday as long as she took medication.

But when she felt unwell during the trip to San Francisco, her husband rushed her to a local hospital.

Eventually she was advised to see Dr Somerville back in London at the Royal Brompton Hospital.

But problems arose when she asked her GP for a referral.

"He gave me three alternatives. One - to see my local cardiologist, two - to stay with Guy's Hospital, and three - to leave the practice.

"I was dumbfounded and didn't know what to do."

Dr Somerville was so unimpressed by the behaviour of Mary's GP that she complained to the Department of Health.

"He wrote a very rude letter. I don't think GPs should be allowed to behave like that one did, I think he should have been disciplined," she said.

Patient did his own research

Jonathan Upton researched his own condition

Sometimes patients only get the specialist attention they need because they persist in finding out for themselves about where they would get the best treatment.

Jonathan Upton has just undergone major open heart surgery to save his life.

It is an operation that would not have taken place had the 31-year-old not done his own research.

He found out he had got a major swelling to one of the main arteries in his heart but his consultant said consultant said it was nothing to worry about and that they could continue to monitor his condition.

Mr Upton said: "I wasn't happy with that. I decided to do some research. I went on the Internet over Christmas, and found a Website in Canada. E-mailed them and gave them my details.

"They said it was very serious and I should seek a second opinion from Dr Somerville.

"So that very day I telephoned her and she said you have got every reason to be concerned.

"What would have happened is I would have been out cycling or swimming and I would have dropped dead."

Another leading cardiologist tells of a young woman with a congenital heart problem who became pregnant.

He says she should have been operated on to sort out the heart problem. She wasn't. She gave birth and a day later dropped dead.

Another incident took place during an exploratory operation to test a young woman's blood flow.

An inexperienced doctor failed to notice that a tube in her heart was blocked. That patient also died.

Government inaction

Dr Peter Doyle, senior medical officer from the Department of Health responsible for cardiac centres, was urged four years ago by five leading cardiac centres to provide funding so that they could become national centres of excellence in the treatment of Guch patients.

Dr Doyle wrote to the 16 regional units to consult them about the idea and to find out whether they were up to the job.

Twelve wrote back saying they were already doing the complex Guch cases, so the department took no further action.

They did not insist on finding out whether all 12 had the necessary expertise.

Even the medical profession does not know which hospitals dealing with Guch patients are performing best.