Most people, and certainly most journalists, assume that charities such as the College of Health and our national waiting list helpline (NWLH) love publicity. In theory, of course, we should because we can't help patients with problems unless they know we exist and we can't afford to advertise.
Our problem is that we have no core funding. We lost the charitable grant that had kept the NWLH going for four years, so, in the hope that some high-profile publicity might help attract a generous alternative sponsor, we agreed to be featured in a Channel 4 Dispatches programme shown in November.
Predictably, our call rate shot up, with the effect that the helpline staff couldn't deal with all of them and other staff had to take messages. We are still struggling to fund the helpline out of our own resources.
The more or less direct result of all this is that I spent a whole weekend recently going through the questionnaires returned to us by all the people who had called at that time telling us how they had got on with our information.
It occurred to me in the process that all or most of these pleas for help might ultimately end up with the new patient advocacy liaison services (PALS). The easiest patients to help are those who can be given information about another consultant with a much shorter waiting list.
Sometimes we can help by suggesting they go back to their GP and ask them to intervene in the hope of getting them upgraded to 'urgent' or 'soonest'.
Since we always ask patients how the quality of their life has been affected by their condition and the wait, we get a lot of feedback which PALS might be able to pass on to the consultant - and clinical governance leads? - in their advocacy role.
Overall, at least 12 per cent of our callers end up going private when, by definition, they did not have private health insurance since they would otherwise not have rung the helpline. Sadly, many others report that they would have done so in desperation, if only they had been able to afford it. One caller who was on a 16-month waiting list to see his consultant about his knee said: 'I have to climb the stairs on my hands and knees. I fell down the stairs and now have to come down backwards on my bottom. '
Another, who had to give up his job as a van driver because of a cataract, received a letter three months after his GP had referred him to the local hospital saying that it would not be possible to give him a date for an outpatient appointment at that time. Eight months later, he had heard nothing further and said: 'If I would known then what I know now, I would have paid to go private while I still had the job. I understand the operation only takes a few minutes, but now I've spent nearly a year with blurred vision and I can't afford it. '
One caller, who had been waiting eight months for a neurology appointment, during which time he lost his job as a teacher, spelled out the wider implications. 'I was told that I can't go to another health authority unless my own has no relevant specialist. I was also told that waiting time was determined by clinical need only and the fact that I have lost my job as a teacher is irrelevant. Seems crazy to me that a teacher who wants to get back to work has been paid in full for six months, then half pay for six months and is now being given incapacity benefit costing the nation a lot of money which could have been saved by getting me seen sooner. I could have been a) cured, b) retired. ' Funny old world, as they say.
One of two case studies that particularly shocked me was a female in the 25-34 age group who had been waiting for two months for admission for treatment of a diagnosed lung cancer and had been told that she would have to wait a further six to eight weeks.
The other was a caller whose husband had been told by his neurosurgeon that he needed radiotherapy within two weeks of an operation for a stage-two brain tumour. The waiting time was six to eight weeks.
In the world of statistics and quantitative analysis, the NHS has the beginnings of a success story on its hands. The vast majority (89 per cent) of consultants see their outpatients within the Patient's Charter maximum of 26 weeks.
Most consultants (67. 5 per cent) do so in less than 13 weeks. That is good news for patients. But that leaves 2 per cent of patients facing a wait of more than a year. And there are 39 consultants with outpatient waiting lists of more than two years, the longest being 260 weeks. It must be possible to do something to tackle this tiny number of disproportionately long waiting lists so as to improve the quality of life of patients who demonstrably shouldn't be treated as statistics.
In the meantime, we'll do our best to help PALS when it is up and running.