Forming an action group was key to getting an inquiry into the Bristol cases.
Andrew Cole reports Some of the most painful lessons from Bristol are still being learned. But the way events there were uncovered offers one particular message - the growing power of the 'consumer' in today's NHS.
For parents who lost children, or saw them suffer harm, there may be little consolation from the impact their fight has had on the wider NHS in strengthening the role of campaign groups.
The scale of the Bristol tragedy only became clear when a group of parents whose children had died or been brain-damaged following complex heart operations began to ask questions and discover worrying patterns. That informal support group spawned the Bristol Heart Children's Action Group in early 1998. That, in turn, led to a public inquiry into events, the revelation that thousands of organs were being retained by hospitals without permission, and, arguably, the birth of half a dozen similar patient action groups.
What these groups have in common is that, unlike the old-style self-help groups, they have been formed in opposition to, rather than with the help of, the medical fraternity.And their purpose is not simply to provide mutual support but to remedy perceived injustices.
Above all, they seek answers the hospital service failed to give. As Michaela Willis, whose son died at the hospital, told the inquiry: 'I think in hindsight if we had got answers at the time, we probably wouldn't be here today.'
The impact of the group on the unravelling of events at Bristol has been dramatic. It was formed in the wake of the General Medical Council hearings early in 1998, with the specific aim of obtaining a public inquiry into child heart operations at the hospital.Within three months, it had achieved this objective - only the 26th public inquiry in the past century.
For chair Stephen Parker, organisation has been one of the keys to their success. 'Some families said, when we first got together, we didn't need a committee. But to be successful you have to be organised, have clear accountability, set yourself targets and make arrangements to bring in funding.
'You can't just expect to go to local newspapers and shout about your problems and have them resolved. You have to have a campaign and know your stuff. And if you're really struggling, then use the threat of litigation to open up the arguments.'
Even with the report published, their work is not done, says Mr Parker. 'We need to ensure the report's recommendations are translated into a change within the medical profession and how it is regulated. If we can't ensure something like this can never happen again, those children will have died in vain.'
Several groups have sprung out of the Bristol experience, most notably NACOR, the National Committee Relating to Organ Retention, and Pity 2, the Alder Hey offshoot, which were formed after the inquiry revelations about wholesale organ retention.
Helen Rickard, a founder member of BHCAG who is now secretary of NACOR, says the organisation's helpline has been vital for parents coming to terms with conflicting emotions.
But it hasn't just been patients who seek help. Many health professionals have used the helpline - especially pathologists. In fact, Ms Rickard and Ms Willis are running seminars for health professionals on bereavement issues.
The action group movement has given a voice to many patients and relatives who felt excluded. It is also having an impact on the service, she feels. 'The professions do seem to be seeking the views of the public much more, and feel they need to affirm what they're doing with people like us first.'
Of course, not all groups have had such an impact.The other parents' group at the Bristol inquiry was the Surgeons Support Group, a body with 600 members which believes the surgeons have been victimised and resents the way the media has, in its view, uncritically swallowed the BHCAG agenda.
And the Brompton and Harefield Heart Children Action Group, formed on almost identical lines to BHCAG to fight what parents believed to be a similar scandal of botched heart operations at the two hospitals, has had to adjust to an inquiry report which found most allegations unfounded.
Chair Josephine Ocloo describes the findings as a 'farce', and will fight on for a public inquiry. But she feels her group has helped open up the hospitals to public scrutiny.
Action groups are the only way ordinary families can fight a system stacked against them, she says. 'Our parents have got a lot of support from this group. They wouldn't normally have any chance of taking on the system.'
Meanwhile, it seems patient action groups will multiply - and take deeper root. BHCAG has vowed to stay in existence to see the report's reforms implemented, while NACOR will be around for 'at least' another two to three years, supporting its 1,400 members and fighting for legislative changes to ensure such a thing can never be repeated.
The only way to halt this expansion, says Mr Parker, is for the NHS to meet demands and improve quality control to prevent the scandals happening in the first place.
'The fact is, if You have got action groups, your system is failing.'