Campaign to set standards for breast cancer care: Fewer than 50% of patients seen by a specialist, charity's survey reveals

FEWER than 50 per cent of the 30,000 women diagnosed with breast cancer each year ever see a consultant who has specialised in their condition, despite the complexities of the disease, a conference was told yesterday.

At the Cancer Relief Macmillan Fund conference in London it was also revealed that there are only 170 nurses - out of 500,000 - who have had special training in breast cancer, the biggest cancer killer of women in Britain. The Royal College of Nursing will today lobby Parliament to double this number as a first step towards remedying the situation.

A survey published by the Macmillan fund, which yesterday launched a leaflet campaign to inform women of their rights and to set minimum standards, shows how few patients receive specialist care, despite the fact that breast cancer kills 300 women a week.

Tomorrow, the Department of Health will announce its own proposals for a radical restructuring of breast cancer services in England and Wales. Douglas Scott, chief executive of the Macmillan fund, said its set of 10 minimum standards had been discussed with the department and was compatible with the Government's proposals.

The survey of more than 5,000 women, half of whom have had breast cancer, found that one in five thought she was badly informed about the condition; half thought they were reasonably well informed, and one-third said they were well informed.

Of the women who had breast cancer, early expectations of their treatment and future were worse than their subsequent experiences. Nonetheless, fewer than half received the quality of care being demanded by the Macmillan fund.

Only 40.1 per cent were given a chance to discuss treatment options; 61.2 per cent were able to talk about their operation before giving their consent; 42.7 per cent had information about side-effects of treatment; 54.2 per cent had access to a specialist nurse or counsellor and only 16.7 per cent were given the chance of reconstructive surgery after mastectomy.

Michael Baum, professor of surgery and director of research and development at the Royal Marsden Hospital, said that only 50 per cent of breast cancer patients see a breast cancer specialist. The rest are treated by consultants who might see fewer than 50 cases a year - less than one a week.

He said that an extra 10 per cent of women would live for at least 10 years after their first diagnosis without a recurrence of cancer, if they received the best available treatment.

'Breast cancer is a very special case,' he said. 'It is a very complex disease and we do not have all the answers. Quality of treatment is only part of the answer. Breast cancer generates enormous fear in women. They experience fear of lack of control, fear of impending death, fear of mutilation, fear of sexual difficulties, fear of their partner's response. They get a lump and live in absolute torment until the diagnosis.'

One of the fund's standards is for diagnosis within four weeks. Other standards include prompt GP referral to a specialist clinic, access to a specialist nurse, full information about treatment and a chance to discuss anxieties.

Cancer countdown, page 20