The people who time forgot

But the editor's advice to be 'as controversial and provocative as you like' feels daunting, not to say reckless, if you work for a small patients' charity which has to spend a great deal of time in competitive tendering for NHS funding.

Where do you draw the line between the acceptable face of consumerism and the thorn in the flesh?

Then I remembered an article I wrote 10 years ago with a rapidly growing sense of deja vu.1 'There is a great deal of rhetoric in the recent white paper about putting the needs of patients first,' I noted in April 1989. 'Unfortunately, there's precious little detail about how this is supposed to happen.' I went on: 'Perhaps a start can be made by introducing some new performance indicators of quality of care and outcome. We could do worse than include in all those patient satisfaction surveys, questions such as: 'Did you get better as quickly as you thought you would?', instead of lumping together discharges and deaths as though it doesn't really matter which way up you leave hospital, as long as you do actually leave.'

These, at least, are now being tackled. Two years later, I was concerned with the then government's plans for reducing hospital waiting lists. It was a heady time, since the Department of Health had just funded the College of Health to set up a waiting list clearing house for people facing very long waits for admission to hospital.

Today that funding has long since ceased, although we have managed to keep our National Waiting List Helpline going with a charitable grant from a private family trust, support from Nuffield Hospitals and very small cheques indeed from grateful patients who really shouldn't need our help.

We are still the only gatherers and holders of information about the length of wait for a first outpatient appointment for virtually every consultant surgeon in the country. Many people still do not realise that it is only after you get to see a consultant in outpatients that the 18-month Patient's Charter clock starts ticking.

Before the internal market, GPs were free to refer any patient to any NHS consultant anywhere in the country - a genuinely national health service. This enabled us to help many thousands get treated in a timely fashion if they were willing to travel. In the case of cardiac surgery patients - some of whom would have been prepared to travel to the ends of the earth - we probably helped save some lives. Thousands of others have been saved years of unnecessary pain. Then came the extra-contractual referral, a complicated, poorly explained and poorly funded system which patients of non-fundholding GPs were forced to use if they faced unacceptably long waits for hospital admission. Fundholders still had freedom of referral.

In seven weeks' time, ECRs will be replaced by 'out-of-area treatments'. Patients will have less choice than ever in the NHS's history. Despite my best efforts, I have been unable to get a clear explanation of how OATs will work.

The consultation document was vague to the point of obfuscation about how they would be funded, and ignored the fact that over half of patients are being cared for by fundholding GPs with genuine freedom of referral.2

More worryingly, it suggested that ECRs enable GPs and patients to 'play the market', as though the exercise of informed choice - for example, wanting to be referred to a centre of expertise for a rare illness - were wholly undesirable.

This attitude flies in the face of the government's attempt to modernise healthcare delivery by encouraging more informed patient decision-making, especially at a time of heightened public awareness of unacceptable variations in mortality. With waiting lists high on the government's agenda, it doesn't make sense to impose limits on referring patients from overstretched hospitals to those with spare capacity.

Maximum flexibility in the system is needed, not least since the secretary of state himself has said that it may take 10 years to achieve his goal of a 'uniformly excellent NHS'.

At the last count, our helpline figures showed 742 consultants had waiting times for a first outpatient appointment over the Patient's Charter maximum of 26 weeks, and 119 were over a year.

These are relatively small numbers. If the political will existed, something could be done about them.

Instead, most of the waiting-list money is being targeted at the places that perform best, with little going to those where patients are suffering the most because of unacceptably long waits.

The real problems, the ones we deal with every day, are being faced by people who do not have the luxury of 10 years to wait for uniform excellence. So I won't plead with ministers on their behalf. I'll give the last word to one such patient. 'The pain from my knee is getting quite unbearable.

'Even though I am elderly, apart from my knee I would be well. After dragging it around for over a year, I feel I'd like to enjoy the quality of life again, even if it's only for a few more years.'

REFERENCES

1 Rigge M. Time to be Im-patient. Nursing Times 1989; 85 (16): 24.

2 NHS Executive. The New NHS: guidance on out of area treatment. May 1998.