Breast Cancer Care: Staggering gap in support for advanced breast cancer patients

Monday, 3 November 2008 12:00 AM

Thousands of people with advanced breast cancer are suffering appalling gaps in essential support and care which is routinely offered to patients with primary breast cancer.

Research released today1 by leading support charity Breast Cancer Care shows that nearly half of all patients with advanced, or secondary2, breast cancer do not have access to a named health care professional who can provide vital medical and emotional care.

This is in stark contrast to those with a primary diagnosis, where 98 per cent of patients say they have access to a named breast care nurse.

Breast Cancer Care is calling for all secondary breast cancer patients to have access to a clinical nurse specialist with the skills and knowledge to help them manage their many and complex needs.

The demand is made in a report to be launched by Breast Cancer Care's Secondary Breast Cancer Taskforce3 at a national conference4 for health care professionals, which is to be opened by National Cancer Director, Mike Richards.

The detailed report, the culmination of a two-year inquiry by leading experts and patients into the needs of secondary breast cancer patients, shows that a lack of dedicated support can have a devastating impact on this patient group.

Patients reported feeling left alone without professional help to cope with a range of challenging and complex decisions around treatment options, emotional and psychosocial support and end of life issues.

Carol Core, 53, from Peterborough was diagnosed with primary breast cancer in 1995. Nine-and-a-half years later she was told that the cancer had spread to her spine and liver. While she received substantial help and support from a breast care nurse when she received her primary diagnosis, Carol said this was not the case with her secondary diagnosis.

"I think that one of the problems is that maybe the people who speak to you think that someone else is giving you the information you need, it's all very ad hoc. Some people may get information from other health care professionals, but I don't think there is as yet a uniformed approach across the board. I think that a key worker would alleviate some of the stress and anxiety that you have through living with secondary breast cancer," she said.

"I had to give up work because of my secondary diagnosis, but nobody ever had the conversation with me as to whether I was coping financially. I was also deeply concerned about practical issues, such as if I fell ill on a Friday night or over the weekend, who could I turn to?

"I had to look for information myself, but the real difficulty was knowing where to start, as you don't always know what the information is that you're looking for, or what help and benefits are available to you."

The Secondary Breast Cancer Taskforce was only able to find evidence of five dedicated clinical nurse specialists in secondary breast cancer across the UK.

This is despite a range of government and NICE guidance on the importance of the provision of such support to patients.

Care may be given by wider nursing staff, but there is little evidence to show that they have the specialist skills needed to provide the care and support needed by secondary breast cancer patients.

Joint research between Breast Cancer Care and the Royal College of Nursing5 has shown that breast care nurses lack the time and knowledge to be able to provide adequate care to those with secondary breast cancer.

The majority of nurses surveyed also indicated that they would like additional training on managing the needs of this patient group.

Dr Peter Harvey, Chair of the Secondary Breast Cancer Taskforce, commented:

"It is very disappointing that half of all patients are not given the lifeline of a dedicated nurse who can help coordinate their care and support.

"While the creation of a new post to meet this role would be the ideal scenario, it is not the only option. We know that clinical nurse specialists already posses many of the skills and knowledge needed, and cancer networks need to work with individual trusts and breast care teams to see how they can best provide this specialised support."

Samia al Qadhi, Chief Executive at Breast Cancer Care, said:

"During the course of its two year investigation, six Taskforce patient members have sadly passed away. So while we know that people can live long, full lives following a diagnosis, we are more than aware that this is not the case for many individuals.

"It is essential that people receive support as soon as they need it, for as long as they need it. Today's call for a key worker marks the start of the charity's campaigning work to ensure that the Taskforce's recommendations become a reality, and that people living with secondary breast cancer can come to expect the same high level of support and care that's available to those with a primary diagnosis."

Ends

Note to editors

For more information call Ian Manley on 0207 960 3450 or 07702 901 334 (out of office hours) or email ianm@breastcancercare.org.uk

1 - Between February and March 2008 a Breast Cancer Care questionnaire was distributed to 1,300 people diagnosed with breast cancer in the last three years in England. A total of 849 people responded, and 61 of these had secondary breast cancer.

2 - A diagnosis of advanced or secondary breast cancer means that breast cancer cells have travelled to another part of the body, such as the liver, lungs or bones. Secondary breast cancer is not curable but thanks to advances in medical treatments the disease can be controlled for months and in some cases years.

3 - The Secondary Breast Cancer Taskforce was a two-year initiative, set up in 2006 by Breast Cancer Care in recognition that people with metastatic (secondary) breast cancer were not receiving the best possible standard of care. A national coalition of healthcare professionals, charities, policy makers and people with metastatic breast cancer, the Taskforce identified gaps in the treatment, support and care of people living with metastatic breast cancer, through surveys, research and expert consensus.

4 - The conference, titled Influencing Policy, changing practice: Improving the care of people with metastatic breast cancer, is being held at the Barbican Conference Centre on Tuesday, November 4 2008.

5 - In January 2004 Breast Cancer Care approached 653 breast care nurses from across the UK to participate in a survey to investigate the current challenges they were facing. Forty two per cent (272 nurses) responded.

Breast Cancer Care is here for anyone affected by breast cancer. We bring people together, provide information and support, and campaign for improved standards of care. We use our understanding of people's experience of breast cancer and our clinical expertise in everything we do. Visit www.breastcancercare.org.uk or call our free helpline on 0808 800 6000.

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