My brother has died of cancer, painfully and bravely, after an impossible and agonising 13-month fight for life during which members of the medical profession, with the notable exception of his GP, were reluctant to tell him what was happening. Perhaps they did not know.
His final indignity in this traumatic period occurred barely a month before he died. With extreme difficulty he hauled himself out of his bed to attend a regular appointment at Milton Keynes hospital. On arrival he waited two hours for the results of a blood test. They never came. He was then informed by a doctor that his notes had been lost and that he should come back in two months. Shaking with rage and shattered at the callous reaction, his poor wife blazed out: "You can't possibly see him again. In two months he'll be dead."
Several months after he finally passed away came a further example of the appalling lack of organisation and concern at Milton Keynes when his widow took a call from the hospital. "We're just checking up on Mr Harper and to see whether he needs another apppointment."
My brother Nigel had cancer of the neck. At his death, his entire body was a shell, riddled with disease. His weight had almost halved: as his illness developed, eating had become progressively more difficult. He barely picked at his food and kept himself going mainly with liquids. To help him eat, the hospital suggested that a shunt could be inserted into his stomach so that he could be fed intravenously. It is a simple operation and a proposal to which, as always, he willingly agreed, even though people who have experienced the procedure will know the results are not always straightforward and far from comfortable. The patient, usually asleep, lies in bed and slowly receives nourishment directly into the stomach over a period of hours.
Once again the hospital let him down, as he braced himself to take this next hurdle. On the day the shunt was due to be inserted, he arrived for the operation only to be told that a mistake had been made and that it could not go ahead.
I was about to take him on a final visit to some of his favourite haunts, among them the Lakes and the Beaulieu motor museum in Hampshire. "Good idea, it'll do him good," said the hospital. But the opposite was the case. We had to abandon the trip halfway up the M6. He was in so much agony and stooped in pain that we were forced to come home. The operation was eventually performed, bringing him much-needed relief, but he never went out again.
My brother bore his illness with immense courage and fortitude, never once complaining about the enormous and endless pain from which he suffered. But the doctors, either through misplaced kindness or lack of communication, could not bring themselves to tell him what was wrong and what were his chances of survival.
It was obvious to his family that his was a terminal case. Nigel was a heavy smoker, one clear reason for his cancer. But the hospital authorities, maybe fearful of being honest, jocularly suggested that he would come to no harm if he continued to smoke throughout his treatment. If he had realised death was inevitable, he would not have gone through the excruciating charade of fighting for his life. But he used to say: "While there is a chance, I've got to take it."
I know his is not an uncommon story. Many cancer patients do not receive the consultation and sometimes the care they deserve, and Nigel's case must be relevant to the experience of numerous people.
Here is a problem, moreover, which has the potential to get worse. One in three people in the United Kingdom are expected to develop cancer at some stage in their life. Precluding dramatic advances in cancer prevention, it is estimated that this figure will rise to one in two by the year 2020.
My brother's experience struck immediate chords with the national charity Cancerlink, which exists to provide people affected by cancer with access to support. It is currently campaigning for improved communication between cancer patients and health professionals.
Its chair, Professor Jessica Corner, director of the centre for cancer and palliative care studies at the Institute of Cancer Research in London, is disturbed at the communication breakdown at Milton Keynes. She says that if Nigel's notes were mislaid, he should have had a consultation without them.
On the general subject of care, she admits that it is only relatively recently that the right to be told that you have cancer has become generally accepted. "Even now in some parts of the UK, you cannot assume that someone has been told their diagnosis, especially if the prognosis is poor." Her experience is that cancer is discussed in veiled terms. People are often informed in surgical clinics that they have a lump or growth that needs to be removed, and they are still all too often left to decipher quite what this means.
Walking through her own local hospital, a large and famous London institution, leaves her with a sense of being present in body, but having left herself, her spirit, all that is impor tant in life, at home. "Combine this with a cancer diagnosis, with all the emotional and physical trauma and upheaval it entails, and the feelings of isolation and exclusion from one's normal world must magnify exponentially."
Corner says it should be remembered that communicating to a patient that they will die is a formidable task for some doctors, and that they need to be provided with special communication skills if they do not naturally possess them. She believes that, in many hospitals, sensitivity around cancer diagnosis has greatly improved, not from within the medical profession but from research studies revealing the inadequacy of care for patients' emotional needs.
My brother's experience is a stark reminder that the future for cancer services and for the NHS is to find better methods of offering support, and to use the experience of patients to change and enhance the system. Corner argues for the fostering of a new relationship with patients, one that encompasses partnership and collaboration, so that illness becomes mutual inquiry. Nigel would surely have benefited from such an attitude. It would not have removed his pain, but it would undoubtedly have assisted him in bearing it more easily.
• Keith Harper is the Guardian's transport editor.
