To support the provision of care and support for people with secondary breast cancer, we developed Standards of care for people with secondary breast cancer.
They were developed in conjunction with people living with secondary breast cancer, healthcare professionals and other relevant stakeholders, and relate to three key areas: information and support, treatment and care, and palliative and supportive care. People living with secondary breast cancer should be able to expect the following.
Information and support
- Timely, high-quality information and support at diagnosis and onwards from a clinical nurse specialist (CNS) who is skilled and knowledgeable in the treatment and care of people with secondary breast cancer.
- A CNS who will act as a point of contact, be an advocate, help coordinate treatment and care planning, and signpost/refer people to relevant support services (including services provided by Breast Cancer Now).
- A comprehensive assessment of emotional, physical and information needs at any time necessary, but especially when first diagnosed, if the cancer progresses and if treatment changes. This should include assessment of any symptoms of the disease and side effects of treatment.
- To be made aware of and be referred to local and national supportive, health and wellbeing services to address problems and help improve quality of life. Services should include psychological support and a range of opportunities to meet or talk to others with secondary breast cancer.
- To be signposted or referred to specialist services for expert financial and employment advice. This should include information on benefits they may be entitled to and rights at work, as well as managing the impact of any loss of income.
Treatment and care
- To be given a clear and personalised plan of all aspects of their treatment and care in a way that is most useful to them. People living with secondary breast cancer should have the opportunity to discuss the aim of treatment with their specialist and, where available, the opportunity to participate in clinical trials. This discussion should include expectations of treatment, the goals of treatment, and how treatment may affect quality of life and wellbeing.
- Have their treatment and care reviewed when necessary by an experienced multidisciplinary team. This is made up of all the healthcare professionals who contribute to care including specialists in palliative and supportive care when required.
- Expect good communication between all members of the hospital and other healthcare teams, including their GP, ensuring that everyone is informed regularly about their condition and any changes in the care plan, so that the patient is provided with the support and care they need.
Palliative and supportive care
- Receive timely information on the benefits of local palliative and supportive care services for patients and the people closest to them. Be referred for specialist input as soon as needed for symptom control, and access to advice and treatment out of normal working hours.
- Support and guidance from a healthcare professional on talking to those closest to them about the impact of living with secondary breast cancer. Be offered support for family from a healthcare professional so that their current and possible future needs can be identified and addressed separately.
- Sensitive and timely advice and support for them and their family on planning end-of-life care. There should be the opportunity to discuss their wishes with whoever they feel most comfortable with in the treatment team, meaning that all those involved with their care are fully aware of patients’ wishes and the patient has control and confidence in the choices they make.