Wednesday, December 02, 2009

The Hugh Grant-backed website that helps with everything from cancer to dementia Read more:



When actor Hugh Grant's mother was diagnosed with pancreatic cancer ten years ago, although she received 'excellent' care, he felt there was nowhere to go to for the unvarnished truth about the disease that was to kill her within 18 months.

Inevitably, Hugh, 49, did what most people do in this situation.

Together with his older brother, New York banker Jamie, he went on the internet.

And while his mother listened to stories from friends and family, 'hearing things anecdotally and probably not always therefore entirely accurately', the Grant brothers found the information online was potentially biased and possibly unreliable.

'The stuff we were finding there would have come from sponsored medical sites - the kind with drug advertising all over them,' he says.

Hugh now knows exactly what they needed - indeed he's now helping to fund it, in the shape of

This website features real people telling their stories - the idea that this will help others, perhaps in making their decisions about treatment, or just simply in coping with a problem.

The site was the brainchild of Oxford GP Dr Ann McPherson. She had the eureka moment while recovering from breast cancer and chatting to another doctor about to have a knee transplant.

'We were well-informed doctors, but were desperate to know how ordinary people felt, how they chose treatments, what it was like for their relatives. We didn't just want to read about people who were glamorous or who had walked up Kilimanjaro after their illness. But we realised there was no way to access such information.'

Convinced the internet could open up healthcare, Dr McPherson set up the site, which now has 50 sections, and includes 2,000 video interviews with patients and, where appropriate, their carers.

So far, it covers most major diseases, including cancer, heart disease, dementia and diabetes as well as things likely to have health consequences, such as pregnancy, screening and child immunisation, death and dying. 


Each section is put together by one of a team of academics based at the Department of Primary Care in Oxford, recruiting and interviewing up to 40 people of different ages, ethnicity, social class and, most of all, with a range of coping strategies.

Beginning with the simple request: 'Tell us what happened,' each interview is edited down to provide other patients with advice gained from hard experience.

'The wider the range of stories, the more valuable the site,' says Dr McPherson. Thus, some carers of people with dementia talk about not being able to cope and even wanting their demented relative dead.

A few cancer sufferers talk about their treatment failing and how they are facing death.

And while most parents contributing to the child immunisation section say they were reassured about the MMR vaccine, those who remained concerned are also given the chance to explain how they reached that decision.

'The amount of time my husband and I have sat down to discuss this; should we, shouldn't we,' says one mother, explaining why she refused to give her two youngest the jab after her second child was diagnosed with autism. 

Health talk: The website aims to share the experiences of real people

Health talk: The website aims to share the experiences of real people

'In the end, though, I realised I'd need a cast-iron guarantee written in stone before I'd venture down that path again - and even then I think I'd probably laugh and think: "Oh, I don't think so." '

Such stories do not appear on websites that are wholly NHS funded, where the patient's story tends to be used to make a point rather than reflect real experiences, says Dr McPherson.

'We were told there was no question of Department of Health funding if we let these parents tell their stories, so we had to look elsewhere; we can't pretend these people don't exist,' she says.

'We didn't want to be told whom we could interview.'

The latest section, on bereavement due to traumatic death, launched last week -and in this case funded by the Department of Health - aims to provide 'comfort and support', to those who've had a relative killed.

One interviewee is Richard Taylor, father of Damilola, the ten-year-old fatally stabbed near his home in Peckham, South East London in November, 2000.

The success of the site is undoubtedly down to Dr McPherson's extraordinary energy, and it now receives around 90,000 visitors every month.

The 62-year-old, who co-authored the global best-selling Teenage Health Freak books, makes maximum use of celebrity contacts to promote her site, usually at the Oxbridge end of the spectrum, including Jon Snow and Philip Pullman as well as Hugh Grant.

But funding remains difficult, with several charities and government departments, including the Department of Health, on the hit list, as well as private donations.

Dr McPherson wrote to Grant when she heard his mother had died

Technorati Tags: ,

of pancreatic cancer to seek his support in raising funds for a new section on this disease.

'I'd given up hope when I got a call six months later saying his correspondence was in chaos, but he'd be delighted to do whatever he could.'

In the end, he contributed the full £100,000 to fund a new section on pancreatic cancer which will go online next year.

'Hugh will be talking in this section - and I'll be interviewed as well,' she adds.

Four years ago, McPherson was diagnosed with pancreatic cancer and after chemotherapy had two years of good health.

'But it has come back and that's not good news,' she says. It's perhaps with this in mind that work seems to be speeding up, with similar sites due to be launched in several countries, and a second site,, aimed at 16 to 25-year-olds.

Hugh Grant says: 'I know if someone had said we could go online and listen to other people who had suffered from the same disease, or to their families, we would have leapt at it.'

Read more: