Cancer treatment: 'Why were we waiting so long?'

When an X-ray revealed a shadow on her husband's lung, Victoria Summerley assumed he'd be treated as an urgent cancer case. But he wasn't...

When the GP told us on Thursday 29 November that there was every chance that my husband, Craig Orr, had malignant lung cancer, I don't think it's an exaggeration or a cliché to say that we were devastated. Craig had had an X-ray two days earlier and, the doctor said, it showed a shadow on the lung and the presence of quite a lot of fluid, which was consistent with some sort of cancerous activity.

The GP told us we would be contacted by St George's, Tooting, our local hospital, where Craig would get the best of care. The hospital would ring us on Monday, he said, and fix up an appointment to see a consultant.

Craig's daughter Kirsten was staying with us that weekend, and for three days, the three of us sat frozen with fear. Kirsten, a psychiatric nurse, is far more knowledgeable about health matters than me. I took one look at the internet, read a statistic that said four out of five lung-cancer patients die within three months, and decided that a little knowledge was a dangerous thing. For Kirsten, far more aware of what the prognosis could involve, it was a horrible blow, and for Craig, of course, it was worst of all.

We all felt relieved when Monday dawned. We sat by the phone. After all, lung cancer was seriously bad news, wasn't it? St George's would want to see Craig right away, wouldn't they?

We waited and waited. In the end, Craig rang the GP, who said he'd investigate. By day's end, he'd come back with an appointment for a CT scan the following Monday, 10 December. Nothing about seeing a consultant.

Craig had initially gone to the doctor two weeks earlier because he had been feeling increasingly exhausted. He hadn't had any pain; just the sort of complete lack of energy that you get with a bout of flu, but without the accompanying symptoms.

He had a cough, however, which got progressively worse. The GP said this was the result of the tumour on his lung constricting the airway and the presence of the fluid, which was making it difficult for him to breathe. Lack of oxygen, coupled with anaemia, was causing the exhaustion.

When we'd seen the GP on the Thursday, Craig had found it difficult to walk 100 yards from the car to the surgery. By the Monday, 3 December, he was finding it difficult to walk across the living room. The next day, he found it difficult to get his breath at all. We asked the GP if it might not be an idea to go private as Craig had Bupa insurance, but he didn't seem keen on the idea.

I braved the internet again and discovered that my vision of Craig being rushed into hospital for treatment was slightly naive. According to current government targets, hospitals are supposed to see urgent cancer referrals within 14 days. That meant we could be waiting another 10 days for an appointment

That doesn't seem too long, does it? Let me tell you: if someone has just told you that you have lung cancer, every hour until you see a consultant seems like an eternity. The idea that you will wait days, or more than a week, to see an expert seems almost cruel. And if in the meantime, the disease, or its symptoms, has made such an impact on your system that you can hardly stand, it is bloody terrifying.

To be fair to the Government, the very reason the targets were brought in was to try to cut down on this agonising waiting time. But the result, it seems to me, is that the targets have become the main preoccupation, rather than the patients. The aim, it appears, is not so much getting patients in as soon as possible, but getting them in before the deadline.

I suppose I could have taken Craig to St George's A&E department, but one doesn't really associate cancer with accident and emergency. Instead, I rang Parkside, a local private hospital that specialises in oncology, and asked how I went about getting treatment there. I still couldn't quite believe that we had to go private in order to get someone to investigate suspected lung cancer with any appearance of haste.

The next morning, Wednesday 5 December, the lung cancer consultant from Parkside rang back at 8am. He arranged a CT scan and a further X-ray that day and saw Craig the following day. He referred him to the consultant respiratory physician, who saw him on Friday 7 December and arranged for him to be admitted the following Sunday. Craig was put on oxygen and a drip to get his blood pressure back up. He was given a blood transfusion, and the respiratory consultant arranged for a pleural drain, so he could breathe more easily, and a bronchoscopy, so she could see what was going on inside the lung. He was to remain in hospital for two weeks.

I'm not telling you this to convince you how wonderful private medicine is, but to try to explain how ill my husband was. The chest consultant told me she thought I'd been right to get him into hospital as fast as possible as, in her opinion, he was "rather poorly". I interpreted this as doctor-speak for pretty ill.

On Wednesday 12 December, I came home to find an answerphone message from St George's. Craig had missed an appointment and they were asking why. Craig also suffers from atrial fibrillation, so I assumed this was a heart clinic. I rang back, to find that the appointment had been for a cancer clinic. I explained to the woman that we hadn't attended the clinic because we'd not been told about the appointment. In fact, I said, because we'd never heard from St George's, we'd gone private. We'd had a CT scan appointment; that was all.

She told me that, yes, we'd apparently missed the CT scan as well. I told her that we'd gone to great lengths to cancel the CT scan. I'd left an answerphone message, and Craig had rung to speak to someone in person to ensure the message got through. I asked her when the cancer-clinic appointment had been made, and whose responsibility it was to tell us about it. She said the appointment had been made automatically on Thursday 29 November, but she couldn't say why we had not been told. The normal procedure, she said, was for someone from the hospital to ring us, and follow up the phone call with a letter.

At the moment, this story ends on an optimistic note. My husband's diagnosis was eventually confirmed as non-Hodgkin's lymphoma, not lung cancer. He is having chemotherapy and appears to be responding very well.

I asked St George's for their comments, and a spokesman emailed me a statement. It said: "All patients urgently referred to St George's with suspected cancer are seen within two weeks, in line with national guidelines. Because of the urgent nature of the condition, rapid referral clinic appointments are initially arranged over the phone and followed up by letter.

"Awaiting the results of a cancer referral can be a stressful time for the patient and their family. Our staff work incredibly hard to ensure the appointment process and any necessary subsequent treatment is as streamlined as possible and the Trust has been praised for its short waiting times and the support it offers patients.

"We are very sorry that in this case the patient was not contacted and are looking into how this occurred to make sure it does not happen again. We will be contacting the family with an explanation as soon as possible."

I'm sure the staff at St George's make every effort to issue appointments efficiently. It is unreasonable to think that you won't get the odd glitch, even in the best-run hospitals. And it's true that Craig's appointment (assuming we'd known about it) would have been within the national guidelines, by one day.

However, I'm sure you'll forgive me if I fail to see any great cause for congratulation.

Target practice: the NHS standards
By Jeremy Laurance

*The two-week standard: patients with suspected cancer should be seen by a specialist within 14 days.

*The latest figures, for October to December 2007, show that – from urgent GP referral to first hospital assessment – 99.6 per cent of patients saw a consultant within this standard.

*The 31-day standard: once cancer is diagnosed, treatment should begin within one month.

*The figures (Oct-Dec 2007) show that – from diagnosis to first treatment – 99.6 per cent of patients received first treatment within this standard.

*The 62-day standard: the overall period from GP referral to start of treatment should be no more than two months.

*The figures (Oct-Dec 2007) show that – from urgent GP referral for suspected cancer to first treatment – 97.1 per cent of patients received their first treatment within this standard.

*The two-week referral for breast symptoms.

*It was announced in September 2007 that all patients referred to a specialist with breast symptoms, even where cancer is not suspected, should be seen within two weeks. The Government says this standard should be fully implemented by December 2009.