A campaign by ordinary patients has helped to change the British medical world. As an inquiry condemns the way an incompetent surgeon was allowed to ruin the lives of many women, Health Correspondent Barry Nelson talks to the leaders of a phenomenally successful grassroots protest group.

IT WAS when the women started filing into the chilly Northallerton church hall that Sheila Wright-Hogeland felt her resolve stiffen. After suffering years of pain and agony because of negligent treatment by surgeon Richard Neale, she was already angry. Left unable to have children after botched treatment of a gynaecological condition, Sheila had good reason to want to stop the then Friarage Hospital surgeon in his tracks. But as more and more women came into the echoing church hall - "they looked like drowned rats because it was pouring with rain outside" - Sheila went from being angry about her own situation to being incandescent with rage about the way dozens of women had been exposed to a negligent surgeon who had already been struck off in Canada after the deaths of two patients.

Despite increasing numbers of complaints and more and more evidence of Neale's unsuitability, the hospital stood by the surgeon from 1985 to 1995. It was time to take matters into their own hands.

"There must have been 50 women at that first meeting back in September 1998 and I had been contacted by more than a hundred by that stage," says Sheila, who organised the meeting with fellow Neale victim Carole Millward, from Northallerton.

"They were very angry but they were so controlled, so very well behaved. There was no screaming or banging on the tables. They all sat there quietly with a cup of tea in their laps. I thought, gosh, they really hope we will be able to do something for them. My heart really went out to them."

As the women told their stories of how botched surgery and poor after-care had left them in pain, incontinent or infertile, Sheila's determination grew. "They had been through hell and were still going through hell. We had to something for them."

That first meeting was the first of many and as the campaign gathered momentum, it began to take over Sheila's life. "Because Carole had a full time job and a small child to look after, I ended up taking most of the calls at home," says Sheila, who admits that being married to a wealthy American businessman made a huge difference.

"It all started after we featured in a front page article in The Northern Echo, appealing for victims to come forward. Overnight we got more than 35 women and within a week we had 120... they were pouring in."

Many of the calls were long and harrowing. "People rang from 7am to 1am day after day. I never refused to take a call or said I was busy or going out. I sat by the phone round the clock," recalls Sheila. "I wrote down all their details verbatim. They had to wait while I scribbled it out."

Carole put the growing list of names and addresses on a computer disc because Sheila didn't have one at that stage. "We have still got that list but now it runs to more than 300," says Sheila.

Within a few months of that Echo article in late 1998, Sheila had an enormous stroke of luck. Yarm businessman Graham Maloney had already fought his own successful battle with the Nuffield private hospital group over the poor care his dying wife received.

After helping to set up the group APROP (Association for the Proper Regulation Of Private Hospitals), Graham rang up and offered his services to the group.

Although Sheila, Carole and the other leading members of the group, including Irene Stewart from Seaton Carew, had managed to get Panorama to screen a documentary about the growing Neale scandal, Sheila admits that Graham turning up out of the blue was a huge boost.

A tenacious Scouser with the gift of the gab, Graham brought ferocious energy to the campaign. Demonstrating a terrier-like refusal to give up, he was fuelled by a sense of outrage at how members of one of the most respected professions had ruined the lives of many innocent and vulnerable women.

"Graham came around to meet me and my husband Richard. I think we started talking at 7pm and it went on until 2am," recalls Sheila.

Graham gave the campaign invaluable advice and a cutting edge. After hearing that victims of Neale were finding it difficult to have their written complaints taken seriously he suggested they write to the Friarage Hospital again, but this time printing the words 'official complaint letter' in block capitals across the top. He also told the women to send copies to the then Health Secretary Frank Dobson, to their own MPs and to the General Medical Council

"Within a few weeks, it was a completely different ball game. We really blew the whistle on Neale and what was going on," says Graham, who spent more and more time at Sheila and Richard's large country house near Kirkbymoorside and became a full-time agitator and advocate.

His persistence soon paid off.

After spending months lobbying MPs in London - often driving overnight and sleeping in his car before door-stepping politicians in pursuit of his own campaign to make private medicine more accountable, his hard-won contacts paid off.

Graham can still remember his feeling of elation when MP David Hinchliffe, chairman of the Health Select Committee in the House of Commons, told him that he planned to bring the committee up to Northallerton to hear from the victims at first hand.

"It was the first time the Health Select Committee had gone outside London. It was a tribute to what Sheila had already achieved," says Graham.

Apart from taking over their lives for six years, the campaign has also cost a small fortune. Sheila estimates that she has spent more than £100,000 of her own money while Graham has taken out five new mortgages on his home to help the cause. "My kids think I'm mad. They keep telling me to get a life," he says.

Travelling up and down the M1 to London "40 or 50 times" cost a lot of money, not to mention flying to Canada to meet victims of Neale on the other side of the Atlantic.

But even in her wildest dreams Sheila Wright-Hogeland could not have imagined the success of the Action and Support Group for Medical Victims of Richard Neale, a title cobbled together on the spot after they realised they needed a name.

From modest beginnings, the group helped build up such a strong case against Neale that the GMC found 34 out of 35 specimen allegations of serious professional misconduct proven and struck him off the UK register in the summer of 2000.

It also influenced the GMC in their decision to increase from ten months to five years the minimum time a struck-off doctor must wait before applying to rejoin the medical register and increase checks on overseas doctors coming into the UK.

In October 2000, John Burton, Tony Blair's agent, sent the campaigners a letter stating: "You have achieved an astonishing amount and have, we believe, contributed greatly to the safety of patients of all sorts in the future."

But the campaign didn't stop there.

Furious at the failures of the GMC and the medical establishment to take action against a negligent surgeon, the group turned their guns on the Government, calling for a full public inquiry into the Neale affair. Instead, the then Health Secretary Alan Milburn announced an independent inquiry into how the NHS handled complaints against the surgeon, which would be held behind closed doors. Angered at the failure to obtain a public inquiry, the group's leaders boycotted the lengthy hearings.

Last week's delayed inquiry report, which strongly criticised the NHS and, by implication, the GMC, was welcomed by the group but they still feel the battle has to go on. "We don't feel it is over at all. The powers-that-be have to implement the report's recommendations," says Sheila.

Despite assurances that the monitoring of poorly performing and negligent doctors is to be improved, Sheila still fears another Richard Neale could happen again.

"It may be a bit harder to slip through the net but we are still up against this old boy network and a culture of cover-up by doctors who are less than competent," says Sheila.

She is particularly angry at the GMC, which has admitted it failed to take action before many women were injured. "The GMC thought it was OK to unleash Neale on British patients," she says. "But I don't see why they should get away with it."