Published: 19/08/2004, Volume II4, No. 5919 Page 18 19

Advances in the treatment of breast cancer must not be allowed to mask the fact that many patients are still getting a raw deal in areas ranging from waiting times to implementation of NICE guidance

Real progress has been made in UK breast cancer services over the last 10 years.

Achieving a two-week waiting time to first appointment for women referred urgently with suspected breast cancer, and extending breast screening for women up to the age of 70 are both incredibly positive steps.

These successes may lead politicians to think that breast cancer has been 'done'. But with breast cancer remaining the most common cancer in the UK and around 1,000 women dying from it each month, Breakthrough believes there is a lot more to do.

If we are to make real progress over the next five years, some key issues need to be addressed:

reducing the long waits for a breast cancer diagnosis that some women experience;

the continued improvement of breast cancer services, including improving information and communications between health professionals and patients so women understand every step of their breast cancer journey;

involving patients more in treatment decisions and in designing breast cancer services;

guaranteeing that national guidelines published by the National Institute for Clinical Excellence are implemented across the board;

educating women about their risk of developing the disease and what they can do to reduce this;

continued investment for research into what causes breast cancer and into new and better treatments and drugs.

Breakthrough wants to see a redoubling of the commitment to high-quality and meaningful research to find the causes of breast cancer.We also need public education campaigns that explode the plentiful and misleading myths surrounding the disease.

For example, we know older women are most at risk of developing the disease, with around 80 per cent of cases occurring in women over the age of 50, yet many of these women think they are not in danger.

More must be done to educate the public about the benefits of early detection of breast cancer and to encourage more women aged 50-70 to take up their invitations for breast screening, as well as to ensure that those over 70 know they are entitled to breast screening on request.

One of the key themes for the forthcoming general election will be choice. To be truly meaningful, patient choice must be supported by high-quality, personalised information about the treatments available and the likely outcomes and side effects.

Breakthrough has developed a Service Pledge for Breast Cancer as a tool for patients and health professionals to work in partnership towards improved breast cancer services so that patients understand what their choices are and what is happening throughout their treatment.

This service pledge asks breast units to make written local service pledges to everyone affected by breast cancer, and includes minimal as well as aspirational standards to be met by each unit.

The aspirational standards we would like to see included in pledges would be:

a requirement for all staff to be trained in communication skills;

the introduction of pre-planned and pre-booked care at every stage of treatment;

radiotherapy waits to be no longer than four weeks; and

patients to be offered immediate breast reconstruction.

We also want patients to have the opportunity to meet someone who has had the operation or to see photographs of the result and for all to be given patient-held records - updated by health professionals as treatment progresses.

Breakthrough is working with seven breast cancer units which have agreed to involve their patients in developing the Service Pledge for Breast Cancer to suit local needs.

We hope to see this extended over the coming years so that eventually all breast units in the UK have their own local versions of the service pledge.

Health secretary John Reid's new target to ensure all patients are admitted for treatment within a maximum of 18 weeks from referral by their GP, and to treat those with urgent conditions much faster, is welcome news, particularly for women who are referred as 'routine' cases but are subsequently diagnosed with breast cancer. Some of these women currently have to wait up to 17 weeks for an appointment with a specialist.

Women have told us of the immense distress and anxiety caused by waiting - regardless of the final outcome - with fear of the prospect of having breast cancer causing many to put their daily lives 'on hold'.

Breakthrough knows the difficulty many GPs have in distinguishing between 'urgent' and 'routine' breast cancer referrals. Our Left in the Dark report investigating this issue was based on research with GPs, women and breast specialists and found the success of the two-week target for women referred 'urgently' by their GP is only addressing part of the problem.

Breakthrough estimates that 40 per cent of all breast cancers diagnosed annually - around 10,000 women in England - are referred 'routinely' rather than 'urgently' by GPs. The need for quick diagnosis is essential and we want all women to be seen by a specialist within two weeks.

A paramount concern for patient organisations, including Breakthrough, is the effective monitoring and implementation of NICE guidance.

Research into the implementation of NICE guidance on Herceptin, a drug known to extend and improve the quality of life of some women with advanced breast cancer, unveiled serious inequalities in access to the drug. Unfortunately Herceptin is not reaching people who could benefit. The next government must make this issue a top priority and develop methods to monitor implementation systematically at a national level.

The latest NICE guidance on breast cancer concerns familial breast cancer and aims to help health professionals to identify and assist women at most risk of developing the disease because of their strong family history.

Around 2,000 of the 40,000 breast cancers diagnosed each year are the result of inherited, faulty genes like BRCA1 and BRCA2, and women carrying these genes are seen as being at high risk, with up to 85 per cent chance of developing the disease.

In addition, other women with more breast cancer cases in their family than would usually be expected are seen as being at moderate risk. The guidance states that all women deemed as being at moderate or higher risk of developing the disease should have access to annual screening or surveillance from the age of 40.

Again it is imperative that this guidance is implemented fully and monitored effectively in order to avoid the situation where women at an increased risk of breast cancer are denied access to crucial services to which they are entitled.

Finally, as a member of the Partnership on Long-Term Conditions, Breakthrough will be supporting the case for a better deal for the 17 million people in the UK living with long-term conditions.

If breast cancer treatments and services continue to improve, breast cancer is likely to be seen as a long-term condition that people can live with and manage.

However, there is still some way to go before this is a reality and we achieve our vision of a future free from the fear of the disease.

Baroness Morgan is chief executive of Breakthrough Breast Cancer.