Patient-led Campaign For More Information To Improve Experience Of Cancer

Despite improvements in treating cancer over recent years, fewer than half of cancer patients are properly involved in decisions about their treatment and care, announced Macmillan Cancer Relief today at the launch of their new initiative 'a voice for life'.

This was the conclusion of a MORI survey, commissioned by Macmillan, which questioned almost 600 people in the UK with cancer about their treatment and care.

The key findings showed that:

• Most people were told they had cancer by a consultant or hospital doctor and the time given for the diagnosis ranged from under five minutes to over five hours (in the case of one respondent). However, the average length of time given to discuss cancer was just 23 minutes. Nevertheless, this is still almost double the time reported in a study conducted in 1991 (13 minutes).

  160

• The longer a health professional spent with a patient during the initial diagnosis the more satisfied they were. For example, while 17 per cent of all respondents are dissatisfied with the way the initial discussion was handled, this almost doubles (32%) when the discussion lasts up to five minutes. By comparison discussions of between 20 and 30 minutes produced a satisfaction rate of over 90 per cent.

  160

• Throughout the whole of their treatment, although 60 per cent had a discussion about their diagnosis, only 40 per cent of patients felt that they were fully involved in decisions about their treatment. Just 30 per cent felt that the treatment choices were set out for them and only 36 per cent said that they were offered emotional support or counselling.

  160

• Other sources of information were not widely available, with fewer than a third being offered any written information and just 21% being put in touch with other relevant organisations.

  160

Macmillan chief executive, Nicholas Young said: "The Government recently pledged to make cancer services more patient centred. What this survey shows is that although there have been improvements, we still have a long way to go before we make this a reality for everyone."

To help accelerate this process, Macmillan has produced The Cancer Guide - a 40 page booklet which gives patients the information they need to play a full part in their treatment and care, if they wish to.

The Cancer Guide has been developed in consultation with patients to ensure that it meets their needs. It includes details on the questions to ask at each stage of treatment, a directory of useful organisations and a dictionary of medical terms.

With the support of the Department of Health in England and the health services in Wales, Scotland and Northern Ireland, free copies of the guide will be given to all newly diagnosed patients. The Guide will also be available on the high street from Boots the Chemist throughout July and August.

Macmillan chief medical officer, Dr Jane Maher commented: "We can do more to give patients the knowledge and confidence to work with health professionals to play a more active part in their treatment and care. There is still so much we need to learn about this disease and people with cancer can teach us a great deal."

The Cancer Guide is one of a number of initiatives being launched by Macmillan as part of 'a voice for life' which aims to:

• enable people with cancer to have more of a voice in their treatment and care so that hey feel more in control of what of what is happening to them
• to challenge public attitudes to cancer; reduce the unnecessary fear
• to increase the number of experts - medical and nursing - so that everyone has access to the best treatment and care

Technical details

1. Free copies of the Guide will also be available from Boots the Chemist during July and the Macmillan Cancer Relief Information line on t: 0845-601 6161 2. Macmillan Cancer Relief funds specialist Macmillan nurses and doctors, buildings for cancer treatment and care, and grants for patients in financial difficulties - services which help make the lives of cancer patients and their families easier and reduce unnecessary levels of fear. 3. MORI research: Information and Support - A Survey of People with Cancer 1999. MORI interviewed 577 adults aged 16 plus in the UK who had been diagnosed with cancer in the last six years. All interviews were conducted face-to-face, in-home between 20 November 1998 and 21 May 1999. 4. Patient quotes : BMRB Developing Information for Cancer Patients April 1999. 5. The Cancer Guide is sponsored by Nationwide who have supported Macmillan since 1994. Over the last five years, the UK's largest building society has raised 1631.8 million for the cancer charity. In the current financial year (to March 2000), the society will continue to support Macmillan and endeavours to break through the barrier if 1632 million in monies raised.

160