You need a referral, not a plane ticket

People with brain tumours are offered little hope or help in Britain, but treatment is available here - if you see the right person. Roger Dobson reports

Ashley Fowle will be five years old in July. Nearly a year ago he was given only six months to live. British doctors had told his parents that there was nothing more that could be done for the little boy, who had been diagnosed as having a brain tumour.

However, his mother, Vivien, refused to give up and tracked down New York-based Professor Fred Epstein, one of the world's leading neurosurgeons, and asked him to operate on her son. The necessary £35,000 was raised for the operation by public appeal.

At about the same time in North Wales, 23-year-old Amanda Morris planned a trip to the United States for a similar operation. She received successful surgery for a brain tumour that had caused a number of handicaps. She is now walking for the first time in two years. It, too, cost £35,000 and she was helped by local people.

Deborah Hubbard also went to New York and paid for a brain tumour operation after being told by British surgeons that there was nothing that could be done for her and that she had only a short time to live. This operation cost the same amount.

A year on, she has resumed her career as a merchant banker and is expecting her first baby, due in October. "I think it is tragic that surgery of this sort was available in the US, but not in Britain.

"Had I accepted the original prognosis on my tumour as inoperable, the chances are that I would not be here today," she said. "I wonder how many other people have accepted such a diagnosis and died in this country?"

In the past three years, more than 20 children and adults have made "life-saving" trips to the New York University Medical Centre for operations after being told there was no treatment for them in the UK.

But did they need to go? Apparently not, according to some of Britain's leading paediatric neurosurgeons, who are trying to sort out the confusion over the availability of treatment, especially for children.

They are urging the Department of Health to introduce a system whereby the 200 cases that arise each year are brought to their attention. They say many of these patients were not offered treatments simply because they were never sent to the right specialist.

"These operations could and should have been carried out in this country. We have met the Department of Health and we want to see a guideline on referrals as soon as possible," said Richard Hayward, senior paediatric neurosurgeon at Great Ormond Street Hospital.

Professor Epstein, director of the paediatric neurosurgery unit in New York, agrees. "The bulk of the patients could have been treated in the UK. It seems as though it is easier to come here to get a second opinion than to go 100 miles in the UK.

"What I have perceived is that in the UK there is a certain lack of inter- institutional collaboration."

He added, "We had one girl from England recently who had seen a neurosurgeon who had relatively little experience with children and who did not make a recommendation to the family that they might get another opinion elsewhere in the UK. Here in the US, people get second, third and fourth opinions."

But when Ashley Fowle, from Northfleet in Kent, flew to America last November, his parents had been told by four specialists, including one clinical professor, that there was nothing that could be done. "We have taped conversations of the doctors telling us there is no one who can do the operation," said Mrs Fowle.

She refused to accept the diagnosis. But after the American surgery, Mrs Fowle remembers being told by another surgeon that it could have been done in the UK had Ashley been referred to the right place.

She said, "I was appalled and very angry when I was told that Ashley could have been treated here.

"My worry is that there are many people out there who take what the doctor says as gospel, and don't look for other opinions."

Amanda Morris was diagnosed as having a brain stem tumour seven years ago and had a succession of operations in Britain. "They eventually said they couldn't do any more for me, they told me I was inoperable," she said.

She, too, saw Professor Epstein, and local people around her home town in Caernarfon raised a total of £70,000 to cover all her costs.

Now back home recuperating, she said: "I am very angry that people like me have to go to the US and pay for operations that should be done here. I believe a lot of people have died and that people are still dying because of what is going on. It is a tragedy."

Deborah Hubbard had started suffering fits one night and the specialist she was referred to diagnosed a brain tumour and told her it was inoperable.

"I was told that the chances of me being around much longer didn't look too good. But I was keen to get another opinion." Her search eventually also took her to the US.

"My father is an accountant whose firm handles the Mayo Clinic audit and, through various contacts, we found Dr Patrick Kelly, a professor of neurosurgery in New York. I phoned him up one afternoon and asked if I could go and see him and he said yes and I had the operation."

Michael Powell, consultant neurosurgeon and director of surgery at London's National Hospital for Neurology and Neurosurgery, said: "There is no doubt that Patrick Kelly is getting very good post-operative results with tumour removal and there have been a great many developments in the techniques used.

"But there is very little available in the US which is not available here, although there is a difference in approach. In the UK, however, most people accept it when a doctor says it is inoperative and seldom seek a second opinion."

Other children who have gone to the US for live-saving brain tumour operations include three-year-old Alicia McCluskie from Cheshire and four-year-old Chelsea Burke from Herne in Kent. Dr Fred Epstein, who treated Chelsea and Ashley, said: "There are situations where things could have been taken care of perfectly well in the UK if the referral system was such that these children were sent to a paediatric neurologist.

"There are operations that I specialise in. But I don't want people to go to the expense of coming here - it is better done in the UK without disruption.

"My perception is that your system is a much more traditional one, a pyramid system with the professor at the top and where one pyramid doesn't talk to another. I think it needs adjusting. Patients like these should be referred to specialists who can make the appropriate decisions."

Richard Hayward, at Great Ormond Street, said: "Clearly, patients like these will not be treated properly unless they are concentrated in a few specialist centres.

"I think what happens is that a child is treated in a centre where there isn't a neurosurgeon involved in the care of children and they therefore will not get into a system where the treatment of their type of problem is an everyday event."

Asked if he thought patients had died because referrals to specialists had not been made, he said, "I have no evidence, but I will say that they would probably have had sub-optimal treatment."