opinion:

A leading teaching hospital is reportedly going to allow television cameras access to its labour wards on new year's eve in the hope of filming the first birth of the new millennium.

Money for the deal, said to be in the region of£20,000, will be used 'to support projects,such as a patient information service, which are not financed through NHS funds', according to one newspaper.

And that is what I find most shocking about this story. Because NHS funds have been used since 1992 for what has somehow become the service's best kept secret: the Health Information Service (HIS). Running one of these, alongside our national waiting list helpline, has been a bit like operating a combined advocacy, agony aunt and detective agency. Looking back on the 320,000 calls we have taken, I am more convinced than ever that the NHS has failed to notice what an immensely powerful source of intelligence it has in the shape of HIS and other patient information services.

First you discover how much relatively straightforward information you would expect to be available, isn't - at least not in any systematic way. Information about consultants' sub-specialty interests is but one example. About half of acute trusts do not routinely make this kind of information available to GPs, never mind patients. This really matters to those patients who have a serious disease, or one that has failed to be diagnosed, or who need to have a revision operation when something has gone wrong.

Information about rare diseases in patient-friendly language is another area where patients are sometimes desperate for help. With rare syndromes, their own GP may not be any wiser than they are.

And even when hospital consultants are good at communicating bad news to a patient, the shock of being on the receiving end, combined with many syndromes' less than meaningful titles - often named after the doctors who first identified them - can leave patients feeling helpless.

Calls to a helpline can involve prolonged searches on the Internet; often there turns out to be no support group on this side of the Atlantic, although thankfully the Internet has made it easier to put people in touch with support groups for whom the 'passport' to membership is shared experience of complex problems which even their doctors cannot fully understand.

Nor is it just patients who turn to us. One recent caller was a receptionist whose GP employer had refused to give a social worker information about a suspected child sexual abuse case because 'it would create a lot of paperwork'. She wanted to know whether she could report this action without the risk of losing her job.

Another caller rang in desperate for advice about her daughter who was being treated for depression on a psychiatric ward. A patient had been assaulting her daughter, but the staff hadn't done anything about it and had now told her to hit back. She had already complained to the hospital and health authority but nothing had happened.

Another recent caller had just come out of hospital after a heart attack. She had lost her job, so had no sick pay. Her seven-day supply of medication had run out. Her application for family credit hadn't come through, and she didn't have£40 for the next lot. No-one could help her. She had tried the ward, her GP, social services and the free prescriptions helpline. Worst of all, she had been told she was risking another heart attack if she didn't take her medication.

Less urgent, but no less distressing, was a call from a man whose wife had had a stroke some time ago. He cared for her 24 hours a day, with some help from Crossroads. He was a pensioner and had been paying for his wife's continence pads. He had completed a form several months previously to be assessed for help with the pads, but had heard nothing.

Our operator rang the district nurse, who explained about a drive to cut back and encourage people to use washable pads - which she admitted wasn't popular.

But to what extent do patients and carers have any rights when it comes to setting standards for local services? How are the experiences of people like this elderly man and his wife taken into account? How much was this man saving the NHS by caring for his wife in their home? Did anyone think about whether they owned a washing machine? How was he expected to dry his wife's continence pads - on the washing line in the garden for all the neighbours to see? Did the committee which made the decision think about the price of the patient's dignity?

If clinical governance is to have a real impact, it is vital that health authorities and trusts appreciate patients' problems, preferably by employing patient advocates with a degree of independence and authority which enables them to act when things go badly wrong.

By tapping into the patient information generated by a helpline service such as ours, they would have an invaluable source of intelligence about where the system is failing.

Much emphasis is rightly being placed on NHS Direct's triage and symptom management functions, but computer-based technology is, in some places, so rigidly algorithm-based as to ignore the fact that many patients have complex problems, rather than evidence-based illnesses.

Such problems are more often to do with failures in communication within and between services than with whether you need an ambulance or should feel free to 'bother the doctor'.

The system has quite enough 'gatekeepers' already. Another vital role for NHS Direct is to maintain information services which offer a sympathetic ear and are able to open a gatewayto practical patient information and support.

Marianne Rigge is director of the College of Health and national waiting list helpline.