Patient groups are getting tougher and more radical.

But will they manage to shift power in the NHS?

When John and Pauline O'Hare first heard about hospitals retaining organs without parents' consent or knowledge, they had no idea it might affect them.

Their daughter Catherine had died at Alder Hey Children's Hospital, Liverpool, several years before, and they had agreed to samples being taken of her lung, liver and kidney at post mortem. But she was 15, whereas most of the other victims seemed to be babies or small children.

It was only when they learnt that the pathologist at the centre of the inquiries, Professor Dick van Velzen, was the one they had dealt with that alarm bells started to ring and the appalling truth emerged.

They soon discovered that Catherine had been stripped of virtually every organ in her body. 'We had a second burial on the last day of 1999, and I reckon we buried more the second time than the first, ' says Mr O'Hare.

As a result of their experiences, the O'Hares became involved in PITY II - Parents Interring Their Young Twice - a group of which Mr O'Hare is now chair. It was set up to provide support and information to the growing number of parents facing this devastating and unprecedented experience and to co-ordinate their response.

The group is pressing for stricter regulation of the medical profession, greater information being made available about their individual records, and changes in the rules relating to both hospital and coroners' post mortems.

But their overriding aim, emphasises Mr O'Hare, is to make sure 'this sort of thing doesn't happen again'.

He says: 'We'd like to see health professionals being more honest and open in giving information, and not treating people as though they are incapable of understanding anything.

'A lot of people are frightened of asking questions and accept everything that the doctor tells them.

But all this has made us aware that we should ask more and more questions.'

The radicalising of the Alder Hey parents is mirrored in the experience of a number of other patient groups that have emerged in the past three years. The first, and the most successful so far, has been the Bristol Heart Children's Action Group, which was set up in 1998 and within three months succeeded in winning only the 26th public inquiry of the century.

But the BHCAG model has been largely copied in the formation of the Brompton and Harefield Heart Children's Action Group, the National Committee Relating to Organ Retention, the Harold Shipman victims' support group and the Ledward Victims Group, to name but a few.

They represent a very different type of patient involvement to the old-style support group, which worked with doctors and other professions to provide information and support to people with a particular disease or condition. In contrast, the action groups have responded to a particular medical scandal or blunder and therefore tend to see doctors as enemies rather than allies.

They have learnt through painful experience exactly how the health service operates, and they use this knowledge to their advantage. They are not afraid to use the power of the media to highlight their plight, nor are they averse to bringing in the threat of litigation to achieve their ends.

Above all, they believe in exposing to public scrutiny the closed and secretive world of the medical profession - and by extension the health service in general. As one member of the BHCAG puts it: 'The health service belongs to us and we should be involved in the decisions made on our behalf.'

The most striking example of the impact of the patient action group is, of course, the inquiry into the baby deaths at Bristol Royal Infirmary, which finally reported last month.

In his report, Professor Ian Kennedy says one of the main lessons from the tragedies at Bristol is that patients' needs must be at the centre of the NHS. At an individual level, this will involve a more open and transparent relationship between professional and patient, with patients having access to information about the relative performance of a hospital, service or consultant unit.

At an organisational level, the public must be involved in decision-making about healthcare at every level. In future, the public's interests should be embedded in all organisations concerned with quality of performance - 'in other words, the public should be 'on the inside', rather than represented by some organisation 'on the outside'.'

The government championed the importance of a patient-centred health service in its NHS plan proposals last year, and was expected to put forward a new package of proposals to increase public involvement as we went to press.

These are likely to include the establishment of a specialist - but not independent - patient advocacy and liaison service in every hospital in England, as well as patient forums in every trust and patient representation at board level.

The big question, though, is whether the reality can match the rhetoric. The omens, even at the top of the service, are not that encouraging. The proposals in the NHS plan were accompanied by the abolition of community health councils - the service's only independent watchdogs. Despite a last-minute defeat of these plans in the House of Lords, the government has made it plain that CHCs will soon be a thing of the past.

There are suspicions that ministers see the public as a useful ally against professional vested interests - such as doctors at Bristol - but are not so keen on them when they make uncomfortable criticisms on wider issues such as funding or structural changes.

One of the fundamental problems, though, is that the health service is simply not geared up to be responsive to its consumers, says Will Anderson, a project officer at the King's Fund who has been examining patient and public involvement in primary care groups for the past two years.

'The health service is a gigantic institution that tends to be defensive and top-down. For patient involvement, the institution should ideally be flexible and open and listening and accessible.

'There is a real struggle between these different cultures. It takes local leaders and champions who are willing to take a few risks to make patient involvement work.'

The big danger, he warns, is that organisations will simply use community involvement to rubberstamp what they were planning to do anyway - and ignore it at other times.

But the lesson from the recent spate of medical scandals is that the health service has to be more open and learn to work in different ways if it is to retain its legitimacy. 'It is so much easier to get good PR staff in and keep the walls up when something goes wrong. It is much harder to say 'let's work together and recognise the problems'.

'But if you do that, people start to feel that their voice matters and what they say will be listened to.'

Perhaps the biggest conundrum, which goes to the heart of the issue of public involvement in healthcare, is: how do you harness the energy of the patient action groups and channel that experience into the more formal structures the government is now proposing?

'One of the biggest problems we have as a society is that people generally show no interest, or take no responsibility for something, until it affects them, ' says Helen Rickard, whose own daughter died at Bristol in the 1990s.

'I didn't give two hoots about cardiology and performance measurements or anything like that - I just thought you went into hospital and came out again. It was only when my daughter didn't come out that it bothered me.

'But how do you get people involved and taking responsibility before There is a bandwagon to jump on?'

Clearly one of the first steps in this process has to be a rebuilding of the trust between doctors and patient organisations, which has been so damaged by recent scandals.Maria Shortis, a former NHS catering manager who was a founding member of the BHCAG, is attempting to do that in a partnership between patients and professionals called 'constructive dialogue for clinical accountability'.

The organisation aims to bring together doctors, nurses and members of the general public to produce models of best practice in the areas of accountability and communication.

The first fruits of their labour are likely to be seen next year in new model guidance on paediatric cardiology surgery. It is hoped that this joint approach can be employed in other specialties in the future.

Ironically, the inspiration for the group came from some of the highly supportive doctors Ms Shortis met while pursuing the facts surrounding the death of her daughter at Bristol in the 1990s. She recalls meeting one highranking heart consultant in 1996.He urged her to continue her campaign.

'He told me: 'Without you, we can do nothing. But with you we can change the face of medical history.' I realised that people really do want change and they were telling us they couldn't do it without us.'

The process of reforming the medical profession still has a long way to go.

'There is something about this public school system of people who are very bright and have only succeeded and never dealt with failure - or when they have It is been swept under the carpet.

They have a culture that still doesn't know how to receive constructive criticism, ' says Ms Shortis.

The group will continue for as long as it is needed.Ms Shortis is optimistic that that will not be forever. 'It will continue to the point where the culture change has been made and there are systems for patient safety and clinical accountability. That should be within five years.'

Liz Kendall, senior research fellow in health policy at the Institute for Public Policy Research, acknowledges the obstacles to successful patient involvement in the health service, ranging from apathy to the costs in time and money of setting up truly responsive systems. Given the competing demands on managers' time, coupled with the bumpy ride they are likely to receive from patient representatives, the temptation to do no more than pay lip-service is understandable.

However, a big investment now could save both time and money later on. She says: 'This is about changing the way you do things.

'But if you genuinely involve the public and take genuine notice of their responses, then you may avoid some of the confrontations further down the line.'