'True stories to feed the heart with hope'

In their very different ways, Philip Pullman, Jon Snow and Radiohead's Thom Yorke all know how to deliver a powerful story. Pullman's novels are simply modern classics, Jon Snow is the Oxford Brookes University Chancellor best known as Channel 4's news presenter, while Yorke's lyrics frequently convey tales of personal despair and global anger.

But the unlikely Oxford trio have come together to help give the world hundreds of new stories from youngsters, whose experiences can bring greater comfort than even the most creative of writers.

The stories are short, sadly, in some cases, like the lives of the children behind them. They deal with issues of life and death that are raw, real and aimed at a select readership that has previously been ignored.

Now they are to be made available on a new website which gives young people the chance to tell others about their experience of illness.

Youth Health Talk is set to become the UK's main online health resource for young people, offering highly personal accounts of battles with cancer and diabetes, along with concerns about sexual health.

At its launch in London, Philip Pullman and another master storyteller, Ian McEwan, listened to a teenager from Oxford speak about being first diagnosed with diabetes. They heard, too, from a proud father how the whole initiative had been inspired by the friendship between an Oxford GP and his seriously ill daughter.

The author of His Dark Materials was moved to say: "There is nothing as powerful as the real-life stories that we have been told today. True stories are not the best medicine, but they are nutritious and sustaining. They feed the mind with information and the heart with hope and strength.

"Nature and medical science together can do a great deal to help our bodies and minds heal themselves. But the real experiences of others who have been through the same troubles give us the nourishment that sustains us in the meantime."

The project, which has won backing from the Department of Health and numerous charities, is the idea of Oxford doctor Ann McPherson, nationally known as the author of numerous books on health and teenagers including The Diary of a Teenage Health Freak.

Dr McPherson learnt that she had breast cancer ten years ago. And a chance meeting at a medical conference with Andrew Herxheimer, an Oxford pharmacologist who had recently been given an artificial knee, led them to detect a huge gap in medical information.

Talking about their illnesses, they recognised the potential benefit of hearing of other people's experiences. It seemed only those who coped with illness by climbing mountains or undertaking heroic feats ever had their stories told.

Five years ago, they created the award-winning website Dipex, the Database of Individual Patient Experience, which now receives a million hits a month.

Dipex offers the opportunity to watch, listen to, or read interviews with people suffering from a wide range of illnesses, including cancers, heart disease, mental health and neurological conditions. It is also a place to find reliable information on treatment but the whole initiative is essentially geared towards adults.

The need for such a service for younger people was spelt out to Dr McPherson over tea by Alice MacLennan, the daughter of her friend and colleague Neil MacLennan, a GP at the same practice in Beaumont Street.

At the age of 18 Alice had been struck by rhabdomyosarcoma, an aggressive form of cancer that attacks muscles, which was to kill her four years later.

Dr McPherson said: "I had known Alice since she was a baby. When she became ill, we used to meet regularly. She knew that I had already set up the Dipex charity and was working to develop it. One day, she simply asked me: 'Why don't you create one for young people?"

Alice told Dr McPherson of the long nights in hospital and how much she would have loved to have been able to turn on the computer and hear other people's stories of hair loss, tiredness and coping with school work.

This desperate desire to hear from others during dark hours of sleeplessness and anxiety in the middle of the night was to be something repeatedly brought to Dr McPherson's attention as she set about raising funding to create Youth Health Talk.

Alice, who died aged 22, was not to see the launch of the charity she had inspired but her father was present.

"You never expect young people to become seriously ill and, when they do, it usually comes out of the blue. And so it was with Alice," he said.

"One day she was the picture of health with all her adult life ahead of her, the next she had rhabdomyosarcoma. A friend wrote to us at the time saying, 'Get the best advice, get the best treatment and get on with your life,' which was sound advice. That's what we did as best we could."

He described how Dr McPherson and Alice developed a routine of going to the Old Parsonage Hotel in Oxford for traditional English afternoon tea.

"Treats are especially important when life is tough. I do not know what they talked about but, among other things, their mutual interest in trying to help others led to the germ of an idea that became Youth Health Talk.

"Alice was hungry for information about her illness and treatment. Not just the brilliant factual information but also the day-to-day issues of living with cancer and treatment. It is the genius of Ann and all those who have worked on the Teenage Cancer module that information is now available to everyone."

Vishal Joshi, from Leicester, who was diagnosed with cancer at 14, spoke of his yearning for positive stories from other young people fighting the disease. In fact, simply knowing there were others facing the same problem brought immense comfort, he said.

"It's a really hard place to be. It would have helped me to have been able to read about others, if it had been positive. On television, you hear all the sad stories about people dying and this does not help your motivation."

Vishal, who is now two years into remission, is one of the first to share his story on the special website.

He said: "You do not know what is going on. I spent a lot of time in hospital and missed a lot of school. And when I was ready to go back I felt I did not really fit in. Because of the treatment you feel very sore and numb and you are puking. But I used to think that there were people who were worse off than me."

But the website will eventually cover a wide range of illnesses and concerns. Initially, the personal accounts will involve young people with cancer and diabetes and part of the site is dedicated to views on sexual health and relationships.

Each site has the video-taped stories of more than 30 different young people from a range of backgrounds and soon there will be a new epilepsy module, which is being funded by the Department of Health. Others are to follow on issues such as chronic fatigue, obesity, bereavement, bullying, self-esteem, smoking, drugs and the problems of being a young carer. Short video diaries made by the young people themselves will also be used on site.

Dr McPherson said enormous care was taken in conducting interviews, based on research carried out at Oxford University, to ensure balance and accuracy. In some cases, particularly in matters of sexual health, interviews were submitted as text.

"The people who speak to us see it like giving blood," she said. "They feel they are giving something back to people who are facing the same experience. There is this feeling, 'We are a community and we are giving our stories to help other people who belong to it'.

"In fact, the stories will also help doctors, nurses and health workers. These are teenagers first and have an illness second. There is now so much talk about how everything should be patient-centred. But there is still a tendency in medicine that, if we want to know about something, we open a textbook to read about symptoms and diagnosis rather than learn from patient experience."

Junior Health Minister Caroline Flint said at the launch: "We've learned that young people are neither small adults nor children. They sit somewhere in the middle and we are at a key stage in developing an understanding of what this means in terms of delivering appropriate services for this age group.

"Innovative approaches such as Youth Health Talk contribute to the development of new interventions designed to creates services that really do respond to young people's needs".

Not surprisingly, the Radiohead singer, now a father himself, made his point a little more succinctly.

"It's an asset for those who get lost and pulled under. There must be nothing worse than to be ill and alone with no real understanding of your situation. Other people's stories are the way that we can cope."

The website address is www.youthhealthtalk.org