CONSUMING PASSIONS MARIANNE RIGGE

At a recent meeting of the waiting-list action team, I was amazed to find that figures from the College of Health on very long waits for first outpatient appointments were clearly stamped 'Restricted, Policy' on every page.

Since members of the public could get all these figures by ringing our national waiting-list helpline - and since information about waiting times is supposed to be freely available under the code of practice on openness in the NHS - this didn't really smack of open government, nor chime with the much-vaunted themes of modernisation and freedom of information.

1 So it was with relief that at a meeting of the information strategy stakeholders' forum I was told we should all feel free to go away and spread the word as far and wide as we liked.

The word was: 'Modernisation of the NHS is important, not just because it's introducing the latest information technology, but also because it recognises that all of us - patients, public and citizens - have higher expectations of the NHS and want to play a bigger part in decision making about the way our care is planned, to feel more in control and to get faster and more convenient access to services without having to wait.'

This acknowledges that patients need information, advice and support throughout their experience of healthcare. But can they get it?

Good Housekeeping recently ran a feature on 'the questions everyone should ask before surgery'.

2 One of these was: 'What's the success rate?' To which the answer was: 'A tricky question. If nothing else, you can usually find out the average success rate for the operation, but ideally you need to know how many similar operations a year your surgeon performs and his complication rate.

Obviously, you may feel uncomfortable asking him, but the specialist register of the General Medical Council holds a record of doctors' specialist training. The College of Health helpline also has these details and can tell you about NHS centres of excellence.'

Well-intentioned, no doubt, but not exactly helpful. Take the following example, one of many phone calls we subsequently received.

The caller had been diagnosed with breast cancer the previous day. All she knew was that the surgeon she had seen was called Mr Brown.

She wanted to know whether he really specialised in breast cancer and how many operations a year he did. She was seeing him again for further tests in two days' time.

She was surprisingly composed when I spoke to her, considering she had just been diagnosed with a life-threatening disease, but understandably she felt she wouldn't be able to pluck up the courage to ask him these questions face to face.

I explained that the trust concerned had given us no information about the consultant's sub-specialty interests - in common with around half the trusts in the country - only that he was a general surgeon. But I promised to do my best to follow it up and report back next day.

Following Good Housekeeping 's advice, I rang the GMC specialist register. The conversation was brief.

The GMC had 816 Mr Browns, and without a full name there was nothing it could tell me or the patient.

When I subsequently checked the information trusts send us about outpatient waiting times - the same information they send GPs, who are supposed to be the system's 'gatekeepers' - I found that about half do not even give consultants' initials, never mind their full names.

And when I looked at the GMC register for myself I found that the vast majority of doctors are included under their home addresses, so most patients would find it impossible to check whether their consultant was on the specialist register.

In this case, even if the patient had done so, she would have discovered, at best, that her Mr Brown had a certificate of completion of specialist training as a general surgeon, since the GMC holds no information about sub-specialty interests or training.

With the caller's permission, I rang the trust to see if I could find out more. It was as helpful as it could be.

The general surgery directorate said that Mr Brown did specialise in breast cancer surgery, but that he had only been with the trust a few months.

But it also said he probably averaged two breast cancer operations a week, excluding biopsies. It even suggested that I ring the Macmillan nurses who worked closely with him.

The breast-care nurse I spoke to said she would be only too happy for our caller to contact her, and that she would already have been given her number. The patient confirmed that, but said she wasn't sure the nurse would be impartial.

In the end, she decided to get her husband to ask the questions she was unable to ask since she felt so vulnerable.

Almost certainly, our caller is in good hands. But if the Calman-Hine report had been fully implemented, would she have been left to rely on Good Housekeeping , the GMC, the College of Health and, ultimately, her husband to find out whether she had been referred to a real breast cancer specialist?

A modern health service could do a good deal better. Indeed, after a 10-minute search on the Internet I found a hospital website with pictures of the surgeons and instant access for cancer patients to information about specialists' advanced training, certification in special competence and membership of specialist associations.

But that was in Nashville, Tennessee. I wish I could have helped our caller with as much information.

REFERENCES

1 NHS Executive, Code of Practice on Openness in the NHS , 1995.

2 The questions everyone should ask before surgery. Good Housekeeping , October 1999.